Public Information About Osteoporosis:

What's Available, What's Needed?

September 1994

OTA-BP-H-131

NTIS order #PB94-209913

GPO stock #052-003-01381-9
Recommended Citation: U.S. Congress, Office of Technology Assessment, Public

Information About Osteoporosis: What’s A~’ailable, What’s Neede(i;)4ac’k,qroli/l(i

Paper, OTA-BP-H- 131 (Washington, DC: U.S. Government Printing Office, July 1994).
Foreword

M

any people have or are at risk of osteoporosis. Older white women

are most likely to have osteoporosis, but younger women, men, and

ethnic minority persons are also at risk. Although public awareness

of osteoporosis has grown in recent years, most people are not

knowledgeable about the disease.

Knowledge about osteoporosis is important because some proposed methods of prevention and treatment involve lifestyle behaviors, such as calcium

intake and exercise, that require awareness and understanding for compliance.

Other proposed methods of prevention and treatment involve the use of medications that may be recommended by a physician or other health care professional, but individuals must decide initially whether to contact a health care

professional about osteoporosis and then whether to comply with the recommendations they receive. Public information is needed to help people make informed decisions about alternate methods of prevention and treatment.

This background paper describes the existing public information about osteoporosis and discusses problems that limit its usefulness, including problems

in the dissemination and targeting of information to different types of people

who have or are at risk of the disease. It also discusses problems that arise because of the way research findings are presented in the mass media and the

widespread dissemination of information about medications that are available

on the rnarket but have not been approved by the FDA for osteoporosis. In

1993, Congress mandated the establishment of a national resource center on

osteoporosis and related bone diseases. The analysis of problems with existing

public information in this document suggests ways in which the new resource

center and other organizations interested in the prevention and treatment of osteoporosis can increase public knowledge about the disease.

This background paper is one of four documents resulting from OTA’s study

of policy issues in the prevention and treatment of osteoporosis. Another background paper, Hip Fracture Outcomes in People Age 50 and 0ver, is also being

issued in July 1994. Two other documents, one on the

screening for osteoporosis and the other on research

teoporosis, will be issued later this year.

costs and effectiveness of

and training issues in osROGER C. HERDMAN

Director
Advisory Panel

Robert P. Heaney, Chairperson

John A. Creighton Professor

Creighton University

Omaha, NE

Steven R. Cummings

Research Director

Division of General Internal

Medicine

College of Medicine

University of California

San Francisco, CA

Barbara L. Drinkwater

Research Physiologist

Department of Medicine

Pacific Medical Center

Seattle, WA

Deborah T. Gold

Assistant Professor of Medical

Sociology

Center for the Study of Aging and

Human Development

Duke University Medical Center

Durham, NC

Susan L. Greenspan

Director

Osteoporosis and Metabolic Bone

Disease Clinic

Beth Israel Hospital

Boston, MA

Caren Marie Gundberg

Assistant Professor

Department of Orthopedics

Yale University School

of Medicine

New Haven, CT

Sylvia Hougland

Associate Director

Laboratory for Clinical

Computing

VA Medical Center

Dallas, TX

C. Conrad Johnston, Jr.

Director

Division of Endocrinology and

Metabolism

Indiana University School of

Medicine

Indianapolis, IN

Shiriki K. Kumanyika

Associate Director for

Epidemiology

College of Medicine

Pennsylvania State University

Hershey, PA

Edward O. Lanphier

Executive Vice President for

Commercial Development

Somatix Therapy Corporation

Alameda, CA

Donald R. Lee

Vice President

Procter and Gamble

Pharmaceuticals

Norwich. NY

Robert Lindsay

Chief, Internal Medicine

Helen Hayes Hospital

West Haverstraw, NY

Betsy Love

Program Manager

Center for Metabolic Bone

Disorders

Providence Medical Center

Portland, OR

Robert Marcus

Director

Aging Study Unit

VA Medical Center

Palo Alto, CA

Lee Joseph Melton, Ill

Head, Section of Clinical

Epidemiology

Department of Health Sciences

Research

Mayo Clinic

Rochester, MN

iv
Gregory D. Miller

Vice President

National Research/Technical

Services

National Dairy Council

Rosemont, IL

Morris Notelovitz

President and Medical Director

Women’s Medical and Diagnostic

Center and the Climacteric

Clinic, Inc.

Gainesville, FL

William Arno Peck

Dean

Washington University School of

Medicine

St. Louis. MO

Diana Petitti

Director

Research and Evaluation

Southern California Kaiser

Permanence Medical Care

Program

Pasadena, CA

Neil M. Resnick

Chief, Geriatrics

Brigham and Women’s Hospital

Boston, MA

Gideon A. Rodan

Executive Director

Department of Bone Biology

Merck, Sharp and Dohme

Research

West Point, PA

Mehrsheed Sinaki

Professor, Physical Medicine and

Rehabilitation

Mayo Medical School

Rochester, MN

Milton C. Weinstein

Henry J. Kaiser Professor

Health Policy and Management

Harvard School of Public Health

Boston, MA

Note: OTA appreciates the valuable assistance provided by the advisory panel members. The panel does not, however, necessarily

approve, disapprove, or endorse this background paper. OTA assumes full responsibility for the background paper and the accuracy of

its contents.
Project Staff

Clyde Behney

Assistant Director

Health, Education and

Environment Division

Nancy Carson

Program Director

Education and Human Resources

Sean Tunis

Program Director

Health

PRINCIPAL STAFF

Katie Maslow

Project Director

Kerry Kemp

Managing Editor

ADMINISTRATIVE STAFF

Cecile Parker

Office Administrator

Education and Human Resew-ces

Beckie Erickson

Office Administrator

Health

Linda Rayford

PC Specialist

Tamara Kowalski

Secretary
contents

Introduction and Overview 1

Public Knowledge About Osteoporosis 10

Information About Osteoporosis Currently Available

to the Public 11

Public Information About Osteoporosis Available from

the Mass Media and Commercial Publishers 11

= Information Available from the Mass Media 11

= Information Available from Commercial

Publishers 16

Public Information About Osteoporosis Available from

Private Organizations 16

■ Information Available from the National Osteoporosis

Foundation 17

■ Information Available from Other Voluntary

Associations 19

■ Information Available from Individual Health Care

Organizations 22

= Information Available from Dairy Industry

Organizations 24

■ Information Available from Pharmaceutical

Companies 27

Public Information About Osteoporosis Available from

Federal and State Government Agencies 31

● Information Available from the National Institutes of

Health 31

■ Information Available from the Food and Drug

Administration 34

■ Information Available from the Office of Disease

Prevention and Health Promotion 36

■ Information Available from the Office on Women

Health 37

■ Information Available from the Centers for Disease

Control and Prevention 37

■ Information Available from the Administration on

Aging 37

■ Information Available from the Department of

Agriculture 38

vii
● Information Available from the State Osteoporosis

Programs 39

Conclusion 39

APPENDIX A: Coverage of Osteoporosis in

Consumer Magazines 43

References 49

Index 57

. . . Vlll
—-

Public Information

About Osteoporosis:

What's Available,

What's Needed?

INTRODUCTION AND OVERVIEW

o

steoporosis is a disease characterized by a decreased

amount of bone and increased fragility of the remaining

bone. Figure 1 illustrates the harmful effects of osteoporosis on bone. Because of their decreased amount of

bone--usually referred to as low bone mass or low bone density ‘—and increased bone fragility, people who have osteoporosis are more likely than other people to experience fractures. The

fractures most often attributed to osteoporosis are fractures of the

wrist, spinal vertebrae, and hip, but other fractures may also be

attributable to osteoporosis.2

Many people have or are at risk of osteoporosis. Estimates of

the number of people affected vary, depending on several factors,

including the level of bone density defined as osteoporosis. In

1993, two international panels of osteoporosis experts defined osteoporosis as bone density more than 2.5 standard deviations below average bone density in healthy young adults. Data collected

between 1988 and 1991 as part of the third National Health and

Nutrition Examination Survey (NHANES III), a large-scale survey of a nationally representative sample of noninstitutionalized

people of all ages, indicate that 17 to 20 percent of American

‘ The term bone mm.s means the amount of hme miner-ii] (primarily calcium) in a particular b(mc. The [cm) bone densl~ rnetans the armmnt of b(mc mineral in a unit of bone

Mind in terms of either area or volume.

2 The Study of Osteiymotic Fractures, a multicentcr study ]nw)lving rm~re than 9,00I3

white w(m]en age 65 and over, found that fractures of the upper am], collar hme, hand,

nb, pelvis, leg, foot, and t(w were statistically more likely to occur in w(mlcn with low

b{me density than other women and theref{we are attributable, at least In part, to osteopm)-”

sis ( I 04).
2 I Public Information About Osteoporosis: What’s Available, What’s Needed?
Public Information About Osteoporosis: What’s Available, What’s Needed? 13

women age 50 and over—approximately six to

seven million women––have osteoporosis, as defined by the expert panels (55). Another 12 to 17

million women age 50 and over have low bone

density, defined by the expert panels as bone density between 1 and 2.5 standard deviations below

average bone density in healthy young adults (55).

The comparable figures for men of all ages and

women under age 50 are not yet available.

As interest and concern about osteoporosis

have increased in recent years, educational materials and programs have been developed to inform

the public about who is at risk of the disease and

what can be done to prevent and treat it. Despite

these efforts, most people are not knowledgeable

about osteoporosis. Some people are simply not

aware of the disease. Others are aware but not

well-informed about it. Some people who are

aware of osteoporosis are not worried about it.

Others, who are worried about osteoporosis, are

frustrated by what they perceive as a lack of information about the disease.

Each week and especially following any media

report about osteoporosis, the National Osteoporosis Foundation, a private, voluntary organization, receives hundreds and sometimes thousands

of calls and letters from people seeking information about the disease (95). Box 1 presents excerpts from letters that illustrate some typical

questions and concerns of people who contact the

National Osteoporosis Foundation for information.

In 1989. several congressional committees and

individual senators and representatives requested

that the Office of Technology Assessment (OTA)

conduct a study of policy issues in the prevention

and treatment of osteoporosis.3 The request letters

asked about the appropriate role of public information in the prevention and treatment of osteoporosis, to whom the information should be

targeted, and what the message should be. To address these questions, OTA identified and analyzed the available public information about

osteoporosis. OTA also contracted for a survey of

consumer magazines to learn what is being said

about osteoporosis in these magazines and to

whom the information is targeted ( 15).

OTA discovered a large quantity of public information about osteoporosis. As attention to

women’s health issues has grown in the past few

years, the amount of public information about osteoporosis has also grown.

The existing print information about osteoporosis consists primarily of newspaper and magazine articles and 2- to 8-page handouts, such as

fact sheets, brochures, and booklets. Broadcast information consists of news reports, public service

announcements, and health information features

on radio and television. The bulk of this public information is produced by the following sources:

●

■

✘

the mass media (i.e., television, radio, newspapers, and magazines) and commercial publishers;

private organizations (i.e., the National Osteoporosis Foundation, other voluntary associations, health care organizations, dairy industry

organizat ions. and pharmaceutical companies); and

federal and state government agencies.

This OTA background paper describes the public

information about osteoporosis that is available

from these sources. Clearly, there is a discrepancy

between the large quantity of public information

about osteoporosis, on the one hand, and the perceived lack of information and most people’s lack

of knowledge about osteoporosis, on the other

hand. OTA believes that several interrelated problems account for this discrepancy. First, the existing public information about osteoporosis is not

sufficiently disseminated. As a result, the informa-
4 I Public Information About Osteoporosis: What’s Available, What’s Needed?

From Iowa

“I would Iike to have the latest literature you have on osteoporosis—what you can do, take, and eat that

will help it from doing any more damage than it’s done already for me, ”

From Nevada

“My wife’s Illness has been diagnosed as osteoporosis and chrome pain. She has suffered several compression fractures in her spine The medical center said her bones are paper-thin, and nothing could be

done about her condition If you have any Information or suggestions about treatment for osteoporosis

that could possibly in any way be of help to my wife or of doctors that really are the best and specialize in

this area, I would truly appreciate the information."

From Missouri

“Your address was given over TV, “Good Morning America, ” to write to for information on osteoporosis.

My bone scan shows osseous atrophy and fx deformations of T8 and T9. Severe pain started about Jan.

29th. Diagnosis-–osteoporosis. I am under doctor’s care, I thought if you had any Information that I might

read to help or learn more about osteoporosis I would appreciate this material. I am 77 years old. ”

From Florida

‘So much IS written in your bulletin about prevention and almost nothing about what the patient can do

herself after she gets it. I have had, for example, 4 compression fractures, Some articles about helpful

exercises, activity, as well as recommended calcium and estrogen (how much) would be appreciated. We

need help too “

From North Dakota

“Please tell me about osteoporosis prevention What do you think of boron? Have you heard of Ethical

Nutrient Bone Builder? What do you think?”

From New York

Please send Information for my husband who IS suffering from bone deterioration, HIS mother has severe arthritis and osteoporosis and IS now confined to a wheelchair due to her condition. My husband (55)

refuses to take calcium since his dentist claims that it can cause kidney stones Please send research

substantiating the need for 1500 mg. calcium (daily) if you think it might prevent further deterioration

Could you recommend an excellent doctor in New York City who could help him?"

SOURCE Letters provided to the Off Ice of Technology Assessment by the National Osteoporosis Foundation, Washington, DC

—

(ion may not be available when people need it, and people who already have osteoporosis and need to

they are unlikely to know where to find it.

Second, much of the existing public information about osteoporosis is not tailored to the different needs of particular population groups.

Although there are exceptions, most of the existing public information about osteoporosis focuses

on prevention of bone loss and targets middleaged and older white women. The focus on prevention of bone loss is appropriate for some

people, but it does not meet the needs of other

know not only how to avoid further bone loss but

also how to prevent falls and fractures and how to

cope with the disability and pain that often accompany the disease.

Targeting public information about osteoporosis to middle-aged and older white women is appropriate in a sense since these women are most at

risk of osteoporosis. Data from NHANES III

show that in each age group, women generally

have lower bone density than men, and whites
Public Information About Osteoporosis: What’s Available, What’s Needed? 15

generally have lower bone density than African

Americans and Mexican Americans (54).4 The interrelationships of age, gender, race, and ethnic it y

are complex, however, and bone density varies

greatly among individuals of the same age, gender, race, and ethnic group. Thus, some young

people have very low bone density; some men

have lower bone density than some women; and

some African Americans and Mexican Americans

have lower bone density than some whites. Targeting public information about osteoporosis to

middle-aged and older white women does not

meet the needs of young people, men, and ethnic

minority persons who are also at risk. In fact, this

targeting probably fosters the widespread misconception that osteoporosis is a disease of middleaged and older white women that need not concern

these other groups.

Third, and most important, much of the existing

public information about osteoporosis is confusing, contradictory, and incomplete. To some degree, this problem is inevitable, given the frequent

publication of new research findings and the lack

of definitive evidence for the efficacy of some proposed methods of prevention and treatment. As is

true in many fields of medical research, new findings about osteoporosis raise questions about previously held ideas and make it difficult to

determine exactly what constitutes accurate information about the disease at any given time.

The way the mass media present information

about osteoporosis adds to the confusion and contradictions that are inevitable in a changing medical field. Research advances in osteoporosis

prevention and treatment are frequently presented

in brief news reports that do not place the findings

in the context of other methods of prevention and

treatment or make clear which individuals are

most likely to benefit. The contraindications and

side effects of new methods of prevention or treatment often are not reported. People who hear these

news reports may. in fact, have the latest information but still not know whether the information applies to them or how it fits with other information

they may have about the disease.

Americans are increasingly urged to become

informed about and take responsibility for their

own health. Reports in the mass media are one

way many people obtain health information.

Some, and perhaps many, people use media reports as a basis for decisions about their own

health care and health-related behavior. A 1990 article in Ladies Home Journal describes the new

"Take-Charge Patient” who “does not simply follow doctors’ orders” but instead wants to know

everything she can about her health. understand

the various options for prevention and treatment,

and participate fully in decisions about her care

(4). Such individuals—women and men—may go

to their physician with information they have obtained from media reports and ask for particular

medications or other treatments. It has been estimated that one-third of prescriptions for new medications are now written at the request of the

patient ( 16).

The combination of these three factors-1) a

changing medical field, 2) brief media reports on

new research findings that may not place the findings in context or make clear which individuals

are most likely to benefit from particular methods

of prevention or treatment, and 3) people who depend on media reports as a primary source of

health information--creates public information

problems. The problems are not unique to osteoporosis, but they must be addressed by anyone

who is interested in increasing public knowledge

about the disease.

The growing use of the mass media to promote

prescription medications adds to these public information problems. Traditionally, pharmaceutical companies have promoted prescription

medications to physicians through direct mailings, personal visits by sales representatives, and

advertising in medical journals. In the past dec-
6 I Public Information About Osteoporosis: What’s Available, What’s Needed?

ade, the companies have begun promoting various

kinds of prescription medications directly to consumers, usually through the mass media ( 16,45).

Sometimes, the companies use print or broadcast

advertisements, which have been allowed by the

Food and Drug Administration (FDA) since 1985.

Often, however, the companies arrange and pay

for press conferences or other media events at

which research findings or testimonials favorable

to their products (or unfavorable to competing

products) are presented.

Concerns have been expressed about the latter

uses of the mass media to promote prescription

medications because the sponsorship of the informat ion often is not clear, and consumers are unlikely to realize that what they see, hear, or read

based on these media events is at least in part an

advertisement ( 16,45). In the case of osteoporosis,

these concerns apply equally to the use of the mass

media to promote nonprescription medications--

e.g., calcium supplements—and dairy calcium.

For these products, as well as prescription medications, the information may be either true or false,

but its sponsorship often is not clear, and consumers may not realize that the information comes

from an organization whose ultimate objective is

to sell a product.

Box 2 describes some of the important research

findings that emerged between 1990 and 1993

about etidronate, a medication proposed for the

prevention and treatment of osteoporosis. The

purpose of the box is not to evaluate the efficacy of

etidronate. Rather its purposes are to illustrate the

important role of the media in informing the public about medications proposed for osteoporosis

and to point out the kinds of problems that may

arise because of the way research findings are

presented, variation in media cover-age of different

findings, and widespread dissemination of information about medications that are available on

the market but not approved by the FDA for osteoporosis.

Sodium fluoride is another medication for

which similar problems have arisen. Sodium fluoride is known to increase bone density and has

been prescribed by some physicians for many

years for their patients with osteoporosis. Like etidronate, it is available on the market but is not approved by the FDA for the prevention or treatment

of osteoporosis. In 1990, the findings of a widely

publicized study showed a significant increase in

bone density but no reduction in the rate of new

spinal fractures and an increase in nonspinal fractures in women who took sodium fluoride

compared with women who did not ( 100). These

findings led some osteoporosis experts to conclude that sodium fluoride should not be used for

osteoporosis except for research purposes (48,53).

During a 1990 osteoporosis conference at

which these negative research findings were discussed, one physician asked the speaker what he

should say now to the patients for whom he had

been prescribing sodium fluoride. The speaker responded that the physician should not have been

prescribing an unapproved medication.

In 1994, interim findings were published from

a study that is using a lower dose and different

form of sodium fluoride. The interim findings

show a lower rate of new spinal fractures in 48

women who are receiving sodium fluoride,

compared with 51 women who are not (92). These

findings were widely covered by the mass media,5

leading some osteoporosis experts to worry that

there will be a surge in the use of sodium fluoride

before the interim findings are confirmed in the remaining years of the study or validated by other

researchers.

Calcium is a third substance for which public

information problems have arisen. Dietary calcium and calcium supplements are widely recommended for the prevention and treatment of

osteoporosis, but recently published studies have

had contradictory findings about the relationship

.—

i SW, for u~amplc. Lcarj. VcIt }’d 7imc.\, .Apr. I 5, I 994 (5 I ) dnd }$:/// .Slrccl .J()//r)l(//, Apr. I 5, I 994 ( 1 29),
-. .-

Public Information About Osteoporosis: What’s Available, What’s Needed? 17

I

Etidronate IS a medication that has been considered for the prevention and treatment of osteoporosis for

many years It IS known to reduce bone loss and was approved by the Food and Drug Administration

(FDA) for treatment of Paget’s disease in 1977 and for two other conditions in 1979 and 1987. Etidronate

has not been approved by the FDA for the prevention or treatment of osteoporosis

On May 3, 1990, the New England Journal of Medicine published the results of a three-year, randomized, double-blind, placebo-controlled study conducted in Denmark which found that spinal bone density

was significantly Increased in 20 postmenopausal women who took etidronate compared with 20 postmenopausal women who did not take etidronate (1 10). In the last two years of the study, the rate of new

spinal fractures was significantly lower for the women who took etidronate, but there was no significant

difference in the rate of new spinal fractures in the two groups over the full three-year period of the study.

The average age of the women in the study was 68 All the women had low bone density and at least one

but not more than four spinal fractures at the start of the study.

On July 12, 1990, the New England Journal of Medicine published the results of a second two-year,

randomized, double-blind, placebo-controlled study conducted at seven sites in the United States which

found that spinal bone density was significantly Increased in 195 postmenopausal women who took etidronate compared with 183 postmenopausal women who did not take etidronate (131) In this study, however,

the women who took etidronate had half as many new spinal fractures as the women who did not take

etidronate (eight versus 17 new spinal fractures in the two groups, respectively) The average age of the

women in the study was 65. All the women had low bone density and at least one but not more than four

spinal fractures at the start of the study

On the day the results of the second study were published, at least 400 newspapers nationwide carried

stories about the study (25) In the following days and weeks, many magazines, newsletters, and other media

carried stories about the efficacy of etidronate in increasing bone density and reducing spinal fractures

Some women who read or heard these stories went to their doctor, some with a newspaper clipping in

hand, to get a prescription for etidronate (62,90) Since etidronate IS approved by the FDA for the treatment

of other conditions, it IS on the market, and prescriptions can be filled even though it IS not approved for

osteoporosis.

Etidronate causes Impaired bone mineralization when taken in high doses or for prolonged periods

(24,37) The recommended dose of etidronate for the treatment of Paget’s disease and the other conditions

for which it IS approved by the FDA IS higher than the dose used to treat osteoporosis in the two studies

described above Thus, some osteoporosis experts were concerned that etidronate would be prescribed in

too high a dose and for too long a period and result in impaired bone mineralization and reduced bone

strength (7,90)

On March 8, 1991, in a public meeting of the FDA’s Endocrinologic and Metabolic Drugs Advisory Committee, data from the U S study were presented, including data which showed that in the third year of the

study the women who were taking etidronate had twice as many new spinal fractures as the women who

were not taking etidronate (21 versus 10 new spinal fractures in the two groups, respectively) (125) Representatives of the company that produces etidronate and some osteoporosis experts argued that the third -

year data should not be regarded as Important because the subjects who continued in the third year of the

study were self-selected, there were very few fractures overall, and the Identification of spinal fractures IS

problematic They argued that the increased Incidence of fractures in the third year of the study in women

who were taking etidronate should be regarded as an instance of spontaneous variation in fracture rates,

unrelated to the use of etidronate Nevertheless, a majority of the advisory committee voted that the data

presented to them did not provide substantial evidence for the efficacy of etidronate, and the FDA did not

approve the use of etidronate for the prevention or treatment of osteoporosis

(continued)

—
8 I Public Information About Osteoporosis: What’s Available, What’s Needed?

To OTA’S knowledge, information about the greater number of new spinal fractures in the third year of

the study in women who were taking etidronate was not made known to the public in any way, although a

transcript of the advisory committee meeting is available from the FDA. Public information about osteoporosis continues to describe etidronate as an investigational drug, Implying that FDA approval has not yet

been but probably will be obtained, and fails to note the FDA’s 1991 decision not to approve it or the reasons for that decision.

OTA does not know how many women are taking etidronate for osteoporosis. Sales of etidronate increased dramatically after July 1990 (1 1), and some osteoporosis experts believe that a very large number

of women are taking etidronate (33,94). Some osteoporosis experts have told OTA Informally that they are

concerned about widespread use of etidronate, particularly for middle-aged women who do not have low

bone mass or spinal fractures and are taking the drug for preventive purposes Osteoporosis experts continue to be concerned about whether women who are taking etidronate are taking an appropriate dose, and

some osteoporosis experts report seeing women m their clinical practice who have been taking too high a

dose of etidronate for prolonged periods (12,94). Since etidronate IS not approved by the FDA for osteoporosis, the company that produces etidronate IS prohibited by FDA regulations from disseminating prescribing Information for the medication.

In December 1993, the American Journal of Medicine published the results of four years of the U S

study, including the final year when the study was no longer blinded (34) The study data show that the

Increase in bone density that occurred in the first two years of the study for the women who were taking

etidronate was maintained in the third and fourth years. The number of new spinal fractures in the third year

of the study IS not reported m the journal article but IS said by one of the researchers to be 14 new spinal

fractures in the women who were taking etidronate and 10 new spinal fractures in the women who were not

taking etidronate (130) (OTA does not know why these numbers differ from the numbers presented by the

company to the FDA advisory committee in 1991, ) The article concludes that there was no significant difference in the rate of new spinal fractures over the three-year blinded portion of the study between the

women who took etidronate and the women who did not take etidronate (34) A subgroup of women was

identified retrospectively for whom etidronate resulted in a significantly lower rate of new spinal fractures

these were women who had bone density below the mean for all the subjects and at least three spinal

fractures at the start of the study

In comparison with the media coverage of the July 1990 report, there was relatively Iittle coverage of the

1993 report As a result, the public IS probably not aware of the important conclusions of the study 1) the

lack of a significant difference in the rate of new spinal fractures in the study sample as a whole between

the women who took etidronate for three years and the women who did not, and 2) the existence of a subgroup of women for whom etidronate did result in a significantly lower rate of new spinal fractures

SOURCE CXflce of Technology Assessment 1994 from sources clfed [n the text and Is-ted In the references section

—

between calcium intake and osteoporosis.6 Mass ports do not distinguish between different

media reports of these findings have resulted in amounts of calcium intake or the effects of calconfusion about the likely effects on bone density cium intake on bone density in people of different

of increased calcium intake. often, the media re- ages and gender.

6 See, lt~r c~amplc, AltJIa et al., 1994 (3); Daw s(m-Hughes ct al., 1990 ( 19); Kanls and Passmtm, 1989 (43), and Reid CI al., 1993 (98).
Public Information About Osteoporosis: What’s Available, What’s Needed? 19

In June 1994, the National Institutes of Health

sponsored a consensus development conference

to develop recommendations on optimal calcium

intake for people of different ages and gender. The

results of the conference will allow better targeting of public information on this issue. Since

scientific research on the relationship between

calcium intake and osteoporosis will continue,

however, it is likely that public information problems in this area will arise again in the future.

Some of the public information problems that

have arisen with respect to these three proposed

methods of prevention and treatment--etidronate, sodium fluoride, and calcium—have also

arisen for other methods of prevention and treatment, including estrogen and calcitonin, the only

two prescription medications that are currently

approved by the FDA for osteoporosis.’ The same

kinds of problems can be expected to arise in the

future for new methods of prevention and treatment.

The ongoing development and testing of methods of prevention and treatment for osteoporosis

is clearly a necessary and positive process, despite

the uncertainty it engenders from time to time

about the efficacy of particular methods. Likewise, media coverage of new research findings

and people’s desire to inform themselves about

health issues are positive phenomena, despite

problems they may cause. Efforts to increase public knowledge about osteoporosis must take place

in the context of these phenomena, acknowledging uncertainty and devising ways to respond

constructively to media coverage of new research

findings and public demand for health information.

When confronted with a lack of public knowledge about a disease or condition and complaints

about lack of information about the disease or

condition, public policy analysts often recommend the development of more public information materials and programs. The description in

this background paper of the existing public information about osteoporosis is intended to show

that a large quantity of public information already

exists and to direct the attention of policy makers

and others to problems in the dissemination and

targeting of the existing information, as well as

problems that may arise because of the way research findings are often reported in the mass media, variation in media coverage of different

findings, and the widespread dissemination of information about medications that have not been

approved by the FDA for osteoporosis.

In 1993, legislation was enacted requiring the

director of the National Institutes of Health to provide for the establishment of a resource center on

osteoporosis and related bone disorders. The resource center is intended to enhance knowledge

about osteoporosis among health care professionals, patients, and the public through the effective

dissemination of information (P.L. 103-43). In

September 1993, the National Institute of Arthritis and Musculoskeletal and Skin Diseases issued

a request for applications from organizations interested in operating the resource center. The Institute received several proposals and expects to

award a grant for the resource center by September

1994 (69).

A resource center is likely to improve the dissemination of information about osteoporosis. The

organization selected to operate the resource center will have to develop ways of targeting information to different population groups. If the resource

center is to be fully effective, the organization that

operates it will also have to develop ways of responding constructively to media reports that provide incomplete or contradictory information
10 I Public Information About Osteoporosis: What’s Available, What’s Needed?

about proposed methods of prevention and treatment. OTA believes, in addition, that as a publicly

funded entity, the resource center should be required to state explicitly the FDA approval status

of any medications mentioned in the public information it produces and to cite the reasons for

FDA decisions, if any, not to approve particular

medications.

Although not the immediate topic of this background paper, it is clear that federal funding for research on methods of prevention and treatment for

osteoporosis is an essential component of any

long-range effort to increase public knowledge

about the disease. This research is needed so that

definitive information about the efficacy of various methods of prevention and treatment can

eventually be made available to the public.

Lastly, it should be noted that the kinds of public information materials and programs discussed

in this background paper are not the only way

people learn about osteoporosis. The other important source of information about osteoporosis is

physicians and other health care professionals.

Many health care professionals are not knowledgeable about osteoporosis. Thus, federal support for professional education and training about

osteoporosis is another essential component of

any long-range effort to increase public knowledge about the disease and ways to prevent and

treat it.

PUBLIC KNOWLEDGE ABOUT

OSTEOPOROSIS

Anecdotal evidence indicates that most people

have heard of osteoporosis but are not knowledgeable about the disease. The findings of a 1991

Gallup telephone survey commissioned by the

National Osteoporosis Foundation supports this

conclusion. A nationally representative sample of

women age 45 to 75 was interviewed. Threefourths of the 750 women interviewed considered

themselves familiar with osteoporosis: 40 percent

rated themselves as very familiar, and 35 percent

rated themselves as somewhat familiar (83).

Nevertheless, only one-fourth of the survey

respondents could identify any consequence of

osteoporosis: only 17 percent knew that osteoporosis can result in curvature of the spine; only 15

percent knew that it can result in broken bones;

and only 7 percent knew that it can result in height

loss. Among the 40 percent who considered themselves very familiar with osteoporosis, one-fourth

believed that there is no way to prevent or treat the

disease.

The Gallup telephone survey identified 29 percent of the 750 survey respondents as being at high

risk for osteoporosis, based on their answers to

questions about family history, menopause before

age 45, surgical removal of the ovaries and uterus,

slender build, lack of exercise, and smoking (83).

Seventy percent of women at high risk for osteoporosis reported they had never talked to their doctor about osteoporosis because they did not see

the need or were not concerned about the disease.

A 1993 telephone survey conducted by Louis

Harris and Associates for the Commonwealth

Fund’s Commission on Women’s Health found

that 73 percent of a nationally representative sample of 2,525 women age 18 and over considered

themselves familiar with osteoporosis: 30 percent

rated themselves as very familiar, and 43 pm-cent

rated themselves as somewhat familiar ( 14). Selfreported familiarity with osteoporosis varied with

age: only 22 percent of the women age 18 to 45

rated themselves as very familiar with osteoporosis, compared with 39 percent of the women age

45 and over ( 14). Self-reported familiarity with

osteoporosis also varied with educational level:

only 18 percent of those with less than a high

school education rated themselves as very familiar with osteoporosis, compared with 25 percent

of those with a high school education and 42 percent of those with a college education ( 14).

OTA is not aware of any data on knowledge

about osteoporosis among men. The subjects for

the telephone survey conducted for the Commonwealth Fund’s Commission on Women’s Health

included 1,000 men, but they were not asked any

of the survey questions about osteoporosis ( 14).

Considering the relatively small amount of public

information about osteoporosis in men, it is likely
Public Information About Osteoporosis: What’s Available, What’s Needed? I 11

that men are less knowledgeable than women

about osteoporosis.

INFORMATION ABOUT OSTEOPOROSIS

CURRENTLY AVAILABLE TO THE PUBLIC

As noted earlier, the public receives information

about osteoporosis from sources that include the

mass media and commercial publishers; private

organizations (i.e., the National Osteoporosis

Foundation, other voluntary associations, health

care organizations, dairy industry organizations,

and pharmaceutical companies); and federal and

state government agencies. The following sections describe the information typically available

to the public from each of these sources.

I Public Information About Osteoporosis

Available from the Mass Media and

Commercial Publishers

The mass media are an important source of public

information about health. According to a study

conducted in the late 1970s, the public ranks the

mass media second only to physicians and dentists as a principal source of health information

(138). The importance of the mass media as a

source of health information has undoubtedly increased since then.

Commercial publishers are another source of

information about health. Commercial publishers

produce some of the health information disseminated by the mass media, as well as information

used by hospitals. physicians, health educators,

and others to inform patients and the public about

health issues.

Information Available from the Mass Media

Television, radio, newspapers, and magazines

provide health information, Every day, adults and

children alike receive countless health messages

from these sources.

The mass media often communicate health information in news reports. Some television and

radio stations broadcast regular health information programs, and some carry talk shows and

public service announcements that convey health

information. Many newspapers have health columns or weekly health sections. Some magazines

focus only or primarily on health-related topics,

and many other magazines include articles on

health topics.

The mass media reach far more people than other sources of health information. A single television program or newspaper or magazine article

can reach millions of people. Individuals who see,

hear, or read a report about a particular method of

prevention or treatment may decide to pursue the

method on their own, or, if a prescription is needed. they may go to their physician to ask for the

prescription. As noted earlier, one source cited in

ConsumerReports estimated that one-third of prescriptions for new medications are now written at

the request of the patient (16).

The information about osteoporosis available

to the public through the mass media often comes

from other sources. The media generally adapt information they receive, however, to emphasize aspects of the information they believe will interest

their respective audiences.

Scientists and health care professionals are

sometimes critical of the way the mass media

adapt and communicate health information. Some

scientists and others complain about inaccurate or

misleading coverage of research findings. On the

other hand, a survey of first-listed authors of articles published in 1989 in the Journal of the

American Medical Association and the New England Journal of Medicine found that 86 percent of

those whose research had been reported by the media believed the coverage was accurate (133).

Some scientists, health care professionals, and

others also complain about headlines that overstate or oversimplify research findings and about

curiosity-peaking captions and between-program

commercials intended to entice people to watch,

listen, or read (71). In contrast, many journalists

believe that these techniques are effective in attracting and retaining people's attention and that

although some people are distracted or offended

by them, the techniques are useful in conveying

health information to the public (15).

As noted earlier, the mass media often present

information about research advances in osteopo-
12 I Public Information About Osteoporosis: What’s Available, What’s Needed?

rosis in brief news reports. Because of time or

space constraints, these reports often do not place

the findings in context or make clear which individuals are likely to benefit from a particular

method of prevention or treatment. As a result,

people are unlikely to understand whether or how

the information applies to them.

With respect to health information generally,

some commentators have noted a bias against reporting “negative” studies, that is, studies that

find no significant effect of the tested intervention. One study that compared the newspaper coverage of two articles from the same medical

journal found that one article that described a positive effect was reported in many more newspapers

and at greater length than another article that described the lack of an effect (50). In response to

this finding, one journalist commented, “Selling a

study that shows ‘no results’ to an editor who

doesn’t understand science can sometimes be a

tough task” (86). Another journalist commented:

To those of us in the news business, [the]

finding that newspapers are biased against negative medical studies seems obvious and the reason for it quite simple. At any newspaper or

magazine published for the profit of its owners,

the first and foremost criterion for deciding

whether to publish a story is whether it contains

information that readers would like to know . . .

Studies that find an effect usually are of more interest—and of more importance-to newspaper

readers than studies that find no effect.

Most American newspapers strive to publish

factual, accurate, and unbiased news stories, but

. . . the newspaper editor who decides he has a

responsibility to give his readers certain information, whether they want it or not, will see

his readers turning elsewhere for news and he

will soon discover he has no newspaper to be

editor of(5).

Also with respect to health information generally, many commentators have noted a bias among

researchers against submitting negative studies

for publication (9,2 1,99). This bias and the media

bias against reporting negative studies mean that

the public is general] y more likely to hear that various methods of prevention and treatment are effective than that the methods are not effective.

Both biases work to the advantage of pharmaceutical companies that do not want publicity for

negative findings about the efficacy of their products. Although not specific to osteoporosis, these

biases are likely to influence the kinds of information the public receives about osteoporosis as well

as the information it receives about other diseases

and conditions.

Television

National network television reaches 98 percent of

households, and cable television reaches 52 percent of households in the United States. Almost

everyone watches television daily, and many

people watch for many hours a day. On average,

children and elderly people watch more television

than other age groups; women watch more television than men; and some surveys show that minority group persons and those in lower

socioeconomic groups watch more television than

other persons (20, 123).

National network and local television news

programs sometimes report the results of osteoporosis research. These news reports are generally

brief, simple statements that last less than a minute. The scripts for television news reports are

usually prepared by an in-house writer, but they

may be based on information from a press conference, a press release, or a commercial news service. Pharmaceutical companies also submit

information directly to television news offices

which may or may not use the information in a

news report.

Some local television stations have aired public

service announcements about osteoporosis. Each

year, the National Osteoporosis Foundation prepares an educational resource kit for National Osteoporosis Prevention Week, a week in May that is

designated by Congress and the President as a

time to focus on osteoporosis. The educational resource kit includes sample public service announcements and suggest ions on how to cent’ince
Public Information About Osteoporosis: What’s Available, What’s Needed? I 13

local stations to air them during Prevention Week

and throughout the year. According to a National

Osteoporosis Foundation official, many local

television stations broadcast the public service announcements (44).

In 1991, the U.S. Administration on Aging and

the National Osteoporosis Foundation cosponsored the development of public service announcements narrated by Dr. Louis Sullivan,

then-secretary of the U.S. Department of Health

and Human Services. The public service announcements were sent to 250 television stations

across the country: 71 of the stations aired at least

one of the public service announcements during

the summer of 1991; nine of these stations were in

the "top 20” markets. An additional 60 stations reported that they were holding the public service

announcements for future use (93).

Several national network news magazine programs and talk shows have broadcast information”

about osteoporosis. During the 1990 National Osteoporosis Prevention Week, for example, ABC’s

“Good Morning America” interviewed Dr. William Peck, then-president of the National Osteoporosis Foundation. During the interview, Dr.

Peck suggested that people contact the National

Osteoporosis Foundation for information about

osteoporosis. As a result, the foundation received

25,000 letters from people asking for information

about the disease (25).

The national television networks offer a few

regular programs dedicated to health information.

One such program is “Health Matters,” a 30-minute health information series that was being

broadcast weekly on stations in 20 cities in 1991.

The series. which was produced and distributed by

a commercial publisher of health news programs,

included some information about osteoporosis

(103).

In comparison with the national networks,

cable television has a large selection of channels,

many of which specialize in specific types of programming targeted to selected audiences. TWO

cable television channels—The Discovery Channel and the Lifetime Channel—specialize in

health information programs. Some of the programs are intended for general audiences, and other programs are intended primarily for physicians,

although lay persons also watch them.

“Your Health” is a series of half-hour health information programs for general audiences that

was broadcast twice a day on the Discovery Channel in 1991. The series included several segments

on osteoporosis, as well as segments on menopause and estrogen therapy (103). “Your Health”

was produced by a commercial publisher of health

news programs.

Radio

American households have an average of eight radios, including kitchen, automobile, bedside, and

portable radios (58). Nine out of 10 people say

they listen regularly to the radio, for an average of

two hours a day. It is unclear, however, how many

people actually pay attention to radio messages

since radios are frequently used as half-heard

background during other activities (97).

Radio most often conveys osteoporosis information as news reports or discussions on health

information programs. The news reports are general] y brief. The scripts for radio news reports may

be prepared by an in-house writer or a commercial

news service and may be based on information

from a press conference, press release, interview,

or other source.

OTA is aware of several health information

programs that have discussed osteoporosis. One

example is a program hosted by Dr. Dean Eden

and syndicated to radio stations nationwide. A

second example is a program hosted by Dr. Gabe

Mirkin on WWRC-AM in Washington, DC.

Newspapers

About 62 million people read one or more of the

1,600 newspapers published daily in the United

States (1 17). Men and women over age 50 are

most likely to read a newspaper regular] y. Married

women under age 30 with children and women

over age 30 who are single parents are least likely

to read a newspaper (42).

Newspapers inform their readers about osteoporosis in news reports, health columns, and

weekly health sections. Newspaper reports about

osteoporosis are likely to be more detailed than
14 I Public Information About Osteoporosis: What’s Available, What’s Needed?

those presented on television or radio, and they

provide “tangible” information that can be read repeatedly.

Newspapers throughout the country published

close to 1,000 news reports about osteoporosis in

1990 (115). Newspaper journalists get information about osteoporosis from press conferences,

press releases, interviews, and other sources.

Big newspapers often have specialized science

writers and a budget for research and investigative

reporting about health issues. Small newspapers,

which constitute the majority of newspapers in the

United States, have few specialists and often rely

on the wire services (113).

As noted earlier, on July 12, 1990, almost 400

newspapers nationwide reported that a study in

the New England Journal of Medicine found etidronate effective for osteoporosis (see box 2). The

newspapers used versions of the news story distributed by ten wire services. Most newspapers

used one of two versions of the story written by an

Associated Press science writer.

In February 1993, Ann Landers’ column,

which is syndicated nationally and in Canada and

Europe, discussed osteoporosis and gave the address of the National Osteoporosis Foundation.

The column generated 100,000 letters to the

foundation from people asking for information

about the disease (96).

Magazines

Some 10,000 different magazines are published in

the United States (58), and three out of 10 Americans say they read magazines daily (97). Magazines are published less frequently than

newspapers, so readers do not get news as quickly.

Magazines that publish health information usually take about three months to publish a news story

after it has been distributed to the media ( 15). The

longer lead time allows journalists to gather and

present more detailed information, if they so

choose.

To find out what is being said about osteoporosis in popular consumer magazines, OTA contracted for a survey of such magazines. From

April 1990 through March 1991, OTA’s contractor

reviewed the contents of 62 magazines to identify

osteoporosis-related articles (15). All issues of51

magazines, as well as some issues of 11 additional

magazines, were reviewed.

Over the one-year period of the survey, 26 of

the 62 magazines had no osteoporosis-related articles (15). Table A-1 in appendix A lists these

magazines.

The remaining 36 magazines had one or more

osteoporosis-related articles. Table A-2 in appendix A lists these magazines with the month and

title of each relevant article and the category and

subcategory of the article’s content. A total of 97

articles are listed. OTA’s contractor used broad

criteria for identifying osteoporosis-related articles, and a few articles about vitamin D, exercise, and calcium are included even though they

did not specifically mention osteoporosis (15).

OTA’s contractor regularly surveys consumer

magazines for articles in the broad categories of

nutrition, food, food marketing, and health policy.

The 97 osteoporosis-related articles identified

over the one-year period of the survey conducted

for OTA constituted 3 percent of all articles identified by the contractor in this time period in these

broad categories (15).

Of the 36 magazines that had one or more osteoporosis-related articles, the magazine Longevity had the largest number-17, followed by

Prevention with nine osteoporosis-related articles, New Woman with six articles, In Health and

Woman ’s Day with five articles each, and Self with

four articles. The other magazines listed in table

A-2 had three or fewer osteoporosis-related articles in the one-year period of the survey (15).8

Magazines are generally categorized in terms

of their content and/or target audience. The 11

8 News magazines were not included in the survey. These magazines have regular health columns, and OTA is aware of some i)steopmJsisrelated afiicles (see, for example, ,Newsueek, May 14, 1990 [87]).
Public Information About Osteoporosis: What’s Available, What’s Needed? 115

magazines in the health category had the most extensive coverage of osteoporosis, with a total of 47

articles or an average of 4.3 osteoporosis-related

articles per magazine. Magazines that target the

20- to 45-year-old audience had an average of 1.7

osteoporosis-related articles per magazine. Magazines that target women over age 40 had an average of l.3 osteoporosis-related articles per

magazine. Relatively little attention was given to

osteoporosis in magazines targeted primarily to

men. African Americans, older people, parents, or

teenagers. Modern Maturity, a magazine targeted

to people over age 50, had no osteoporosis-related

articles, even though many people in this age

group have or are at risk of the disease (15).

About half of the 97 articles identified by

OTA’s contractor were longer than one page.

These articles are marked with an asterisk in table

A-2. Longer articles usually convey more information and detail. On the other hand, journalists generally agree that shorter articles are read by

more people. Thus, consumers may have read and

may remember more about osteoporosis from the

shorter articles (1 5).

Since magazine editors often weave several

topics into a single article, content analysis is difficult. Clearly, however, calcium was the most

popular osteoporosis-related topic in the one-year

period of the survey. Twenty of the 97 osteoporosis-related articles discussed sources of calcium.

In contrast to a few years earlier, the relative efficacy of dietary calcium versus calcium supplements was not a major topic. Instead, several of

the articles discussed the issue of balancing one’s

need for calcium against increased health risks

due to the fat, cholesterol, and caloric content of

dairy products (15).

Eight articles discussed factors that affect calcium absorption, including the phosphate in sodas, the oxalate in certain green leafy vegetables.

and the excessive use of antacids One article

noted that absorption of calcium supplements is

improved by taking a smaller dose several times a

day (15).

The importance of calcium intake to achieve

peak bone mass was discussed in one article targeted to college students and in a research report

.-

in Prevention. Peak bone mass was also mentioned in two of the other articles identified in the

survey ( 1 5).

Exercise was the second most popular osteoporosis-related topic in the period of the study. Eleven of the 97 articles were about exercise. Four of

the 11 articles focused on the negative effects of

excessive exercise, i.e., amenorrhea and bone

loss. Many articles about exercise that appeared in

the 62 magazines during the period of the survey

did not address osteoporosis ( 15).

Estrogen therapy was the topic of five of the 97

articles. The articles discuss the role of estrogen

therapy in decreasing one’s risk of osteoporosis

and heart disease, as well as its possible role in increasing the risk of certain cancers. The other

medications discussed in one or more of the 97 articles were etidronate, calcitonin, sodium fluoride, progesterone, and human growth hormone

( 15).

Four articles discussed the use of electricity to

stimulate bone healing. Two of these articles suggested that electricity may eventually be used to

treat osteoporosis (15).

Osteoporosis in men was discussed in three articles. Runner's World reported research done in

Portland, Oregon, showing bone loss in 30- to

87-year-old men: it recommended regular exercise and calcium-rich foods. Two other articles

discussed a study of osteoporosis in men age 21 to

79 and recommended calcium (15).

During the time of the survey, many consumer

magazines published articles about the lack of research on women health. Osteoporosis was mentioned in two of these articles. Self published a

chart showing how the National Institutes of

Health budget is allocated for 10 research areas;

osteoporosis was ninth on the list (15).

Very few articles gave any source for additional

information about osteoporosis. Self published

toll-free telephone numbers for health information, but osteoporosis was not among the diseases

for which a number was given ( 15).

Some of the articles identified by OTA’s contractor stressed self-help, whereas other articles

recommended that people see a physician before

instituting a preventive or treatment strategy. Ar-
16 I Public Information About Osteoporosis: What’s Available, What’s Needed?

ticles about calcium seldom recommended seeking advice from any health professional. Articles

about exercise that included exercise instructions

advised people to consult their physician before

beginning the regimen. Articles about medications recommended medical supervision. Most of

the articles about estrogen therapy advised

women to make the decision about treatment in

consultation with their physician (15).

Information Available from

Commercial Publishers

Commercial publishers produce educational materials to inform health care professionals and the

public about a variety of health topics, including

osteoporosis. Some commercial publishers produce health and medical news programming for

the mass media that has included messages about

osteoporosis. Commercial publishers also produce videotapes, audiotapes, and written materials used by physicians and other health educators

to inform patients and the public about osteoporosis (32,102,1 03).

One videotape produced by a commercial publisher features an 11 -minute segment about osteoporosis that appeared on ABC Television’s

“20/20” news magazine program (Churchill

Films). Another videotape describes osteoporosis

as a “biological time bomb set in youth to go off

much later in life” and profiles a woman athlete

protecting herself against risk factors for osteoporosis (Films for the Humanities & Sciences). A

third videotape comes with a pamphlet that can be

used to reinforce the video message or used separately (Milner-Fenwick).

Some commercial publishers produce fact

sheets and brochures about osteoporosis that are

distributed by health educators. Typically, these

publications discuss osteoporosis risk factors,

ways to reduce bone loss, and bone density testing. One brochure describes the warning signs of

osteoporosis, such as loss of height, curvature of

the spine, dental problems, and back pain—topics

that are not addressed in many osteoporosis publications (Charming L. Bete Co., Inc.).

To ensure that the information they produce is

complete and accurate, some commercial publishers have their publications reviewed before they

are published. One commercial publisher, for example, contracted with two osteoporosis experts

to advise its staff writers and artists who were developing a booklet about osteoporosis. The booklet was then sent to 10 osteoporosis experts for

review, and their comments were incorporated

into the final product. Booklets are updated periodically, and suggestions from readers are used to

revise them (102).

I Public Information About Osteoporosis

Available from Private Organizations

Public information about osteoporosis is available from the National Osteoporosis Foundation,

other voluntary associations, health care organizations, dairy industry organizations, and pharmaceutical companies. Each of these types of

organizations produces and distributes printed information about osteoporosis-e. g., fact sheets,

brochures, newsletters, articles, and reports.

Many of these publications contain general information about osteoporosis, risk factors for the

disease, and prevention strategies that focus on

overall good health, a calcium-rich diet, and

weight-bearing exercise. Some publications discuss the benefits and risks of various medications

for osteoporosis.

Most of the organizations distribute their osteoporosis publications directly to the public, Typically, the publications are distributed free or for a

nominal shipping and handling fee, but some organizations charge for some of their publications.

Many of the organizations permit and encourage

other organizations to use and distribute their publications.

Near] y all of the organizations not only produce

publications but also conduct other types of activities to educate the public about osteoporosis.

Some of the organizations have staff members

who regularly answer inquiries about osteoporosis and send out osteoporosis publications. Many

of the organizations conduct osteoporosis educa-
Public Information About Osteoporosis: What’s Available, What’s Needed? I 17

(ion programs for community groups, and some

produce audiotape and videotaped public information materials as well as printed materials.

Information Available from the National

Osteoporosis Foundation

The National Osteoporosis Foundation is a private, voluntary organization that came into existence in 1986 to advocate for osteoporosis

research and services, inform the public about the

disease, and conduct other activities to address the

problem of osteoporosis. As of 1994, it has a mailing list of 40,000 members and donors, including

scientists. health care professionals, business and

community groups, patients, and their families

(96). In addition to its main office in Washington,

DC, the National Osteoporosis Foundation has regional offices in Atlanta and Chicago, both established in 1993. and is in the process of establishing

other regional offices.

The National Osteoporosis Foundation produces and distributes public information materials

about osteoporosis and functions as a national resource center for anyone seeking information

about the disease. OTA’s research indicates that

the National Osteoporosis Foundation is currently

the primary source of public information about osteoporosis.

National Osteoporosis Prevention Week

A major focus of the National Osteoporosis

Foundation’s public information activities is National Osteoporosis Prevention Week, usually the

week in May that begins on Mother’s Day. As

noted earlier, Congress and the President have

designated that week as a time to focus attention

on problems and solutions associated with osteoporosis. The foundation views National Osteoporosis Prevention Week as a kickoff for its

year-round activities (95).

National Osteoporosis Prevention Week:

Educational Resource Kit: The National Osteoporosis Foundation produces an educational resource kit for National Osteoporosis Prevention

Week. The materials in the kit are updated annually to incorporate current scientific information

about the disease and ideas from previous Prevention Week experiences. The 1990 educational resource kit contained the following materials:

■

■

■

■

■

■

●

National Osteoporosis Prevention Week poster;

suggested activities to promote awareness of

osteoporosis;

background information about osteoporosis,

including a consumer information booklet,

“Boning Upon Osteoporosis,” an osteoporosis

risk factor questionnaire, a description of currently accepted and investigational osteoporosis therapies, and an annotated bibliography of

articles about osteoporosis in men;

● ’Prevention Pointers” that are targeted to specific audiences (preteens, teens, young adult

women, mid-life women, older women, and

men of all ages);

sample press releases and public service announcements for use by local newspapers and

broadcast media;

guidelines on how to advocate for state and federal legislation supporting osteoporosis prevention and treatment; and

information on managing the physical and

emotional effects of osteoporosis and setting

up an osteoporosis support group.

National Osteoporosis Prevention Week:

“Partners in Prevention:” Each year, the National

Osteoporosis Foundation enlists the help of government agencies, businesses, and other organizations as “Partners in Prevention” to publicize

National Osteoporosis Prevention Week. In 1990,

the list of "Partners in Prevention” included 120

organizations, classified as “Associate Partner,”

“Contributing Partner,” “Supporting Partner” or

“Sustaining Partner”. The comparable list for

1994 included 300 organizations in the same four

categories (96).

Associate Partners are nonprofit, national

membership associations and federal agencies.

These organizations are expected to provide their

affiliates at the state and local level with information about National Osteoporosis Prevention

Week and to encourage their members to present

osteoporosis education programs in their communities. OTA telephoned 47 Associate Partners
18 I Public Information About Osteoporosis: What’s Available, What’s Needed?

listed in the 1990 directory and found that the extent of their involvement in National Osteoporosis

Prevention Week varied. Most of them included

information about Prevention Week in their newsletters and other mailings. Some distributed National Osteoporosis Foundation educational

resource kits to interested members. One displayed osteoporosis posters and pamphlets in the

lobby of its office building. One participated in

media interviews about osteoporosis, and one

sponsored television public service announcements.

Most of the Associate Partners told OTA they

generally are not sources of public information

about osteoporosis and usually refer people with

questions about osteoporosis to the National Osteoporosis Foundation. A few of the Associate

Partners reported that they produce professional

and patient education packets, and a few reported

that they operate osteoporosis information clearinghouses.

Contributing, Supporting, and Sustaining Partners provide funding for the foundation educational resource kit and other materials for National

Osteoporosis Prevention Week. OTA telephoned

47 Contributing Partners listed in the National Osteoporosis Foundation’s 1990 directory, including

35 health care organizations, five membership organizations, two university research centers, and

five pharmaceutical or medical equipment

manufacturing companies. As described later in

this background paper, OTA found that the 35

health cm-e organizations were the type of Contributing Partners most likely to conduct osteoporosis public information activities.

As part of the 1990 National Osteoporosis Prevention Week, educational programs were conducted at schools, hospitals, clinics, health fairs,

shopping malls, work sites. and women’s clubs.

Some of the programs were conducted only during Prevention Week, and others were also presented at other times.

The educational materials and programs devel -

oped during the 1990 National Osteoporosis Prevention Week included the following:

●

●

m

a booklet with activities to encourage children

to eat calcium-rich dairy foods and to educate

women who care for children about osteoporosis and its risk factors, developed by the Child

Care Association in Wichita, Kansas;

a tee shirt with a logo reflecting the theme of the

1990 Prevention Week campaign, “Generations of Prevention,” designed by the Osteoporosis Awareness Resource Center in Spokane,

Washington; and

a luncheon with foods high in calcium to complement a presentation on osteoporosis and

nutrition held at a local country club, organized

by the Mid Michigan Regional Medical Center

in Midland, Michigan.

National Resource Center

Throughout the year, the National Osteoporosis

Foundation functions as a national resource center, responding to requests for information about

osteoporosis from the general public, health care

professionals, and community organizations. In

1990, a National Osteoporosis Foundation official estimated that the organization was receiving

200 to 300 telephone and mail inquiries a week

(44). A sample of 26 letters provided to OTA by

the foundation included requests for information

from individuals who have osteoporosis and their

families (see box 1 at the beginning of this background paper). Six requests were for general information about osteoporosis; 13 were for

information about various treatments; two were

for information about prevention; two sought financial assistance to pay for bone density testing

or medications: one wanted to verify a diagnosis

of osteoporosis; one sought psychological counseling for a family member with osteoporosis; and

one sought information about starting a support

group for people with osteoporosis and their families.

Since 1990, the number of requests for information received by the National Osteoporosis

Foundation has increased greatly. In 1992, the organization initiated a toll-free information num-
Public Information About Osteoporosis: What’s Available, What’s Needed? 119

ber. In the first two months after the toll-free

number was initiated, 10,000 calls were received

(95). In 1993, the foundation received 100,000

telephone and mail requests for information, in

addition to the 100,000 letters received in response to the Ann Landers column mentioned earlier (96).

Nature of the National Osteoporosis

Foundation’s Osteoporosis information

The National Osteoporosis Foundation’s publications and the information given to people who

telephone the organization are general in nature

and essentially unbiased. The publications typically provide an overview of osteoporosis and its

risk factors and recommend regular exercise and a

balanced, calcium-rich diet to prevent osteoporosis.

The National Osteoporosis Foundation does

not recommend specific treatments or give medical advice. Since 1991, it has included the following statement in some of its publications:

The National Osteoporosis Foundation does

not advocate the general use of therapies not approved by the Food and Drug Administration for

the prevention and treatment of osteoporosis.

Some of the National Osteoporosis Foundation’s publications are targeted to special populations. One example is the "Prevention Pointers”

mentioned earlier. Another example is the ● *Bonewise” osteoporosis information kit for older

people produced by the foundation in 1991, with

funding from the U.S. Administration on Aging.

The “-Bonewise” kit includes the following brochures and fact sheets:

●

●

m

●

"The Older Person’s Guide to Osteoporosis,”

an overview of the causes, prevention, and

treatment of osteoporosis;

“Are You at Risk?” a risk assessment questionnaire;

“Facts About Osteoporosis, Arthritis, and Osteoarthritis,” a description of each of these diseases;

"Living with Osteoporosis,” a guide for people

with osteoporosis with tips for everyday living

and advice on how to avoid fall-related fractures;

“Testing Your Bone Health,” a description of

the available tests to measure bone density; and

a directory of state units on aging and other state

sources of information about programs and services for older people.

The consumer information booklet, “Boning

Up on Osteoporosis,” mentioned earlier, was developed in 1989 by the Osteoporosis Center at the

University of Connecticut’s Health Center in

cooperation with the National Osteoporosis

Foundation (81 ) and revised in 1991 by the same

group (82). The 60-page booklet discusses risk

factors for osteoporosis, methods of detecting osteoporosis, and the role of calcium, vitamin D, exercise, estrogen, calcitonin, and several

investigational medications in preventing and

treating osteoporosis. It also includes exercises

for people who have osteoporosis.

In addition to the public information materials

already noted, the National Osteoporosis Foundation publishes a quarterly newsletter, The Osteoporosis Report, and produces fact sheets, charts,

graphs, and videotapes and audiotapes that can be

used for media presentations about osteoporosis.

It has developed a booklet on medications that can

cause bone loss, a pamphlet on talking with your

physician about osteoporosis, and a slide show for

community presentations. In May 1994, the

foundation’s regional office in Chicago organized

community forums on osteoporosis ats ix community hospitals (96).

The National Osteoporosis Foundation has cosponsored numerous scientific conferences on osteoporosis, as well as educational workshops for

physicians and other health care professionals. It

also publishes a physician’s resource manual on

osteoporosis.

Information Available from Other

Voluntary Associations

Many voluntary associations other than the National Osteoporosis Foundation also inform the

public about osteoporosis, although sometimes
20 I Public Information About Osteoporosis: What’s Available, What’s Needed?

not on a sustained basis. Most of these associations have a particular interest in women health.

This section describes the public information activities of some of the associations.

The Inland Empire Council of the Girl Scouts

of the U.S.A. serves girls scouts aged 5 to 17 years

in Idaho and Washington State. In cooperation

with the National Osteoporosis Foundation, the

Washington Dairy Association, and a local support group for people with osteoporosis, the Inland Empire Council developed a “Healthy

Bones” badge to teach young girls about the importance of healthy lifestyles, a calcium-rich diet,

and exercise to reduce the risk of osteoporosis in

later years. The educational materials compiled

for the badge program include a calcium guide, an

aerobic exercise fact sheet, an osteoporosis brochure and risk factor checklist, a poster on the four

food groups, and the Washington State Dairy

Council’s audiovisual catalogue. During the 1990

National Osteoporosis Prevention Week, a local

television channel featured two girl scout troops

working on the “’Healthy Bones” badge.

Future Homemakers of America, Inc. is a national organization of about 300,000 young men

and women who are studying or exploring career

opportunities in home economics. The organization has an educational program, “Student Body,”

that is intended for use by teenagers in schools and

other community groups to teach their peers to eat

right, be fit, and feel good about themselves. The

nutrition education portion of the program, called

● ’Dairy Does a Body Good,” focuses on the body’s

need for calcium to develop and maintain strong

bones. It emphasizes dairy products as the preferred source of calcium. The program includes a

videotape, a discussion guide that mentions osteoporosis, ideas for program activities, and a poster

handout with calcium-rich recipe suggestions.

Funding for both the videotape and supplementary materials was provided by the National Dairy

Promotion and Research Board. Other corporate

sponsors of the program are Frito-Lay, Inc., Kraft,

Inc., and PepsiCo Foundation, Inc.

The Women’s Association of the National Rural Health Network is an affiliate of the National

Rural Electric Cooperatives Association. A few

years ago, in connection with National Osteoporosis Prevention Week, the Women’s Association

conducted an education campaign that involved

distributing National Osteoporosis Foundation

materials and a videotape on osteoporosis produced by the Public Broadcasting Service to the

cooperatives. The education campaign was not

continued because of the cost of mailing the

educational materials to the cooperatives and because, according to an association spokesperson,

there have been no major changes in the information disseminated a few years ago (66).

Melpomene Institute for Women’s Health Research in St. Paul, Minnesota, is an organization

of individuals professionally trained in health

care, physical education, and sports for girls and

women. The institute researches and distributes

information on issues such as body image. athletic

amenorrhea, exercise and pregnancy, and osteoporosis. The institute publishes the Melpomene

Journal, which has featured two articles about osteoporosis: one article summarized current

knowledge about osteoporosis, and the other described a Melpomene osteoporosis study that examined bone density, diet, activity levels. and

other lifestyle characteristics of women aged 50 to

80. The institute offers an information packet containing articles about osteoporosis and a videotape

on osteoporosis. The institute’s library has several

hundred articles about osteoporosis and will

search their database for information about a specific topic and provide callers with relevant articles for the price of copying (40).

The National Women’s Health Network in

Washington, DC, publishes The Network News, a

quarterly newsletter that has featured several articles about osteoporosis, including:

“Is Osteoporosis Inevitable?” which discussed

risk factors for osteoporosis and recommended

self-help measures to reduce one risk (March/

April 1984);

“Major Drug Manufacturer Funds Osteoporosis Public Education Campaign,” which criticized an osteoporosis public information
Public Information About Osteoporosis: What’s Available, What’s Needed? \ 21

campaign funded by Ayerst Laboratories-the

manufacturers of an estrogen medication (May/

June 1985); and

■ ‘osteoporosis Screening: Pro and Con,” which

featured opposing viewpoints about the use of

bone density testing to screen people at risk of

osteoporosis (January/February 1988).

The National Women’s Health Network also

publishes a 40-page information packet on osteoporosis. The net work maintains a bibliography on

osteoporosis that is used to recommend specific

articles to callers. Callers are also referred to other

organizations, such as the Women’s Midlife Resource Center in San Francisco and the Older

Women’s League in Washington, DC (36).

The National Women’s Health Resource Center, a nonprofit subsidiary of the Columbia Hospital for Women in Washington, DC, was founded in

1988 to increase awareness of women’s health issues through advocacy and educational programs.

The center newsletter, National Women's Health

Report, provides information about a variety of

women health issues. In 1990, the National

Women’s Health Resource Center sponsored a

two-day workshop, “Forging a Women’s Health

Research Agenda,” which resulted in considerable media coverage of the participants’ concerns

about lack of sufficient research on women

health issues, including osteoporosis (85).

The Older Women’s League, a voluntary

association in Washington, DC, with chapters nationwide, includes information about osteoporosis in its newsletter and the materials it mails to

callers on request. The Older Women League is

currently planning public information programs

on osteoporosis to be held in three locations in

1994.

The American Association of Retired Persons

(AARP) produces and disseminates public information about osteoporosis through several of

its divisions, including its National Resource

Center on Health Promotion and Aging, its

Women’s Initiative, and its Women’s Activities

Communications Division. AARP’s pamphlet series, Timeless Pioneers, which is produced by the

Women Activities Communications Division.

has, for example, included information about osteoporosis in several recent issues.

The American Running and Fitness Association is a nonprofit, educational association that

educates the public about the benefits of exercise.

The association publishes a newsletter that has

discussed the role of exercise in reducing the risk

of osteoporosis.

In 1991, the American Medical Association

and the American Dental Association initiated a

“Women’s Health Campaign” to inform women

about 10 women’s health issues, including osteoporosis. Good Housekeeping Magazine, one of

the sponsors of the campaign, featured a supplement in its January 1991 issue that included articles and editorials about each of the 10 health

issues. The article on osteoporosis, entitled “Calcium: A Key to Preventing Osteoporosis,” discussed calcium, weight-bearing exercise, healthy

lifestyles, and estrogen therapy as preventive therapies for osteoporosis. It recommended methods

of preventing falls and fractures, discussed therapies such as etidronate and vitamin D, and referred

readers to the National Osteoporosis Foundation

for additional information.

Other associations of health care professionals

also produce public information about osteoporosis, in addition to professional education materials

and programs for their members. These professional associations include the American Academy of Orthopedic Surgeons, the American

Dietetic Association, the American College of

Obstetricians and Gynecologists, and the Nurses

Association of the American College of Obstetricians and Gynecologists.

Lastly, the Food Marketing Institute, an

association of food retailers and wholesalers, copublished with the National Institute of Arthritis

and Musculoskeletal and Skin Diseases a booklet

entitled "Boning Up on Osteoporosis.” A total of

20,000 copies were distributed through 1,500 grocery stores nationwide. The publication explains

osteoporosis and its risk factors. discusses estrogen therapy, calcium, vitamin D, and weight-bear-
22 I Public Information About Osteoporosis: What’s Available, What’s Needed?

ing exercise as ways to reduce the risk, and

suggests ways to prevent falls and fractures. The

publication refers readers to the National Osteoporosis Foundation for additional information.

Information Available from Individual

Health Care Organizations

Some hospitals, medical centers, and independent

medical practices that provide osteoporosis diagnostic, preventive, and treatment services also

conduct public information activities to increase

awareness of osteoporosis and market their services. OTA contacted the 35 health care organizations that were Contributing Partners to the 1990

National Osteoporosis Prevention Week to learn

what they do to educate the public about osteoporosis. OTA does not know whether these health

care organizations represent many other health

care organizations in the United States or whether

they are relatively unique with respect to their osteoporosis public information activities.

Two of the 35 health care organizations that

were Contributing Partners to the 1990 National

Osteoporosis Prevention Week were independent

medical practices: a private metabolism and bone

health practice run by an endocrinologist and a

women clinic run by four gynecologists. The endocrinologist told OTA that he does not inform the

public about osteoporosis but does produce several osteoporosis fact sheets for his patients (10). A

spokesperson for the women’s clinic told OTA

that the clinic offers public osteoporosis seminars

at least four times a year. At the seminars, the clinic presents a film, “’Osteoporosis,” produced by a

commercial publisher, and distributes the National Osteoporosis Foundation brochure “osteoporosis: A Woman’s Guide” and other educational

materials produced by the National Institute on

Aging, a pharmaceutical company, and the clinic.

These publications are also displayed in the clinic

lobby ( 106).

The remaining 33 health care organizations

were hospitals or medical centers. Of these 33 facilities:

= two facilities—a women hospital and an osteopathic medical center—that had offered specialized osteoporosis services in 1990 reported

that they no longer did so;

● 11 facilities diagnosed osteoporosis as one of

their general services but provided no specialized osteoporosis services; and

~ 20 facilities provided specialized osteoporosis

services, including osteoporosis risk evaluations, information about the disease, and recommendations on how to prevent bone loss.

Some of these facilities also provided bone

density testing.

Spokespersons for the two facilities that no

longer offered specialized osteoporosis services

cited the lack of third-party reimbursement for

bone density testing and the lack of demand for

their services as reasons for discontinuing the services. One facility noted a preference by most

people to consult their personal physician about

osteoporosis, and the other facility cited a lack of

public awareness of osteoporosis. Neither of the

facilities had conducted public information activities (41 ,70).

Of the 11 hospitals and medical centers that

diagnosed osteoporosis as one of their general services, four conducted osteoporosis public information programs during the 1990 National

Osteoporosis Prevention Week, and one of the

four conducted osteoporosis public information

programs at other times during the year. All four

facilities had staff members who responded to inquiries about osteoporosis and sent osteoporosis

publications to people who requested them: two

used on] y National Osteoporosis Foundation publications (32, 137); one used a combination of National Osteoporosis Foundation and National

Dairy Council publications ( 18); and one used an

osteoporosis fact sheet produced by a commercial

publisher. One of the facilities had a display of osteoporosis handouts from the National Osteoporosis Foundation and the National Dairy Council

in its lobby (18), and one had a newsletter (circulation 5,000) that has included articles about osteoporosis (32).

Of the 20 facilities with specialized osteoporosis services, only one—an osteoporosis diagnostic and treatment center--did not conduct
Public Information About Osteoporosis: What’s Available, What’s Needed? 123

osteoporosis public information programs, although it had done so initially to market its bone

density testing services (91 ). Another facility—an

orthopedic clinic associated with a sports medicine hospital--conducted its first osteoporosis

public information program during the 1990 National Osteoporosis Prevention Week (68). The

clinic used the National Osteoporosis Foundation educational resource kit to prepare articles

about osteoporosis for a local newspaper, distributed National Osteoporosis Foundation brochures

and fact sheets at a local shopping mall, and presented an osteoporosis prevention program to a

group of teenage girls. In addition, a foundation

with which the sports medicine hospital is

associated published an article about calcium and

an article about osteoporosis in its quarterly magazine (circulation, 20,000) (68).

The remaining 18 centers with specialized osteoporosis services reported that they educate the

public about osteoporosis throughout the year by

activities, such as:

● developing and distributing osteoporosis brochures and fact sheets;

■ publishing osteoporosis newsletters or health

promotion newsletters that include articles

about osteoporosis;

■ publishing information about osteoporosis in

newspapers, popular magazines, professional

journals, and books;

■ serving as community resource centers for information, audiovisual materials, and publications about osteoporosis; and

■ presenting osteoporosis information programs

to community groups. such as women’s clubs,

church groups, senior citizen groups, and

workplace and professional groups.

Box 3 describes the public information activities

that were being conducted in 1991 by one of these

centers, the Osteoporosis Center at the Hospital

for Special Surgery in New York City.

Seven of the 18 centers with specialized osteoporosis services reported that they operate community information and resource centers that

collect journal articles and books about various

health issues, including osteoporosis (8,46.49,

57,60,89, 134). One of the seven centers operates a

lending library that includes osteoporosis publications and videotapes (57). All of the resource centers respond to public inquiries about osteoporosis

and mail osteoporosis publications to anyone who

requests them. One center maintains a list of

people who have inquired about osteoporosis and

regularly mails them updated osteoporosis information (89).

One of the 18 centers reported that it offers diet

and exercise classes to women that include information about the importance of good diet and

regular exercise in preventing osteoporosis (59).

Three centers reported that they offer exercise

classes to people with osteoporosis that stress

muscle strengthening and behaviors to prevent

falls and fractures (56,59,1 11). Two centers offered support groups for people with osteoporosis

and their families (56, 105). One center used a mobile van to visit area neighborhoods at least twice a

month to distribute osteoporosis information and

provide free risk assessments ( 134).

In addition to the 35 health care organizations

that were Contributing Partners to the 1990 National Osteoporosis Prevention Week, OTA is

aware of several other health care organizations

that have general health newsletters which have

included information about osteoporosis. The

Mayo Clinic Health Letter has printed articles on

various methods of prevention and treatment for

osteoporosis, including calcium, sodium fluoride.

estrogen, and etidronate, and in 1984 printed a

special supplement on osteoporosis (67). The

Harvard Health Letter has also printed articles on

methods of prevention and treatment for osteoporosis and in 1991 printed a special supplement on

osteoporosis (35).

The Osteoporosis Center at the University of

Connecticut’s Health Center has a newsletter, Osteoporosis Center News, that focuses entirely on

osteoporosis. The newsletter includes articles

about methods of prevention and treatment for osteoporosis, public information programs at the
24 I Public Information About Osteoporosis: What’s Available, What’s Needed?

In 1985, the Hospital for Special Surgery, a 192-bed hospital specializing in orthopedics and rheumatology, established an Osteoporosis Center in conjunction with its Metabolic Bone Disease Service. The Osteoporosis Center provides comprehensive assessments, counseling, and referrals for people who are at

risk of or have been diagnosed as having osteoporosis. In 1991, the center served about 1,000 people,

most of whom were women in their 40s and 50s who wanted to know about their risk for osteoporosis and

methods of preventing and treating the disease (28).

In addition to patient assessments, counseling, and referrals, the Osteoporosis Center provides public

Information and professional education and training about osteoporosis and serves as a source of subjects

for osteoporosis research projects being conducted in the hospital (27). When it was established in 1985,

the center was one of the first, if not the first of its kind in the United States.

The public Information activities of the Osteoporosis Center include the development and distribution of

printed materials about osteoporosis, participation in community health fairs, sponsorship of public information programs about osteoporosis at the hospital, presentations about osteoporosis in community and

workplace settings, and media interviews about osteoporosis. In 1991, the center was distributing a variety

of printed materials about osteoporosis, including three 9- to 13-page pamphlets developed by the center,

“What IS Osteoporosis, “ “Nutrition and Osteoporosis, ” and “Exercise and Osteoporosis “ The center was

also distributing printed materials produced by the National Osteoporosis Foundation and other sources

The center staff noted the difficulty of keeping printed osteoporosis information up to date (28),

In cooperation with the hospital’s Community Education Department, the Osteoporosis Center has sponsored several public information programs on osteoporosis. One program on osteoporosis and menopause

drew an audience of 250 and had to be repeated a second time for people who could not be accommodated in the first session Another program on osteoporosis and hip fracture drew an audience of 300

(101)

From January 1990 through July 1991, staff of the Osteoporosis Center and physicians from the hospital’s Metabolic Bone Disease Service who work with the center made a total of 27 public presentations

about osteoporosis (28) Many of these presentations were to community groups, such as attendees at the

Senior Citizen Center at St Patrick’s Cathedral and the JASA Westside Senior Center, both m New York

center, and osteoporosis research at the center and

elsewhere.

Information Available from

Dairy Industry Organizations

Dairy industry organizations inform the public

about osteoporosis primarily to promote the use of

dairy calcium. The principal dairy industry organizations involved in this effort are the National

Dairy Promotion and Research Board and the

United Dairy Industry Association, which is composed of the American Dairy Association and the

National Dairy Council.

Much of the public information produced and

distributed by dairy industry organizations discusses the importance of dairy products for good

health generally and does not mention osteoporosis. Some of the information mentions osteoporosis briefly, and some focuses entirely on

osteoporosis.

In addition to their other public information activities, each of the dairy industry organizations

has staff members who answer telephone or written questions from the public, health care professionals, and others, including questions about

osteoporosis.
Public Information About Osteoporosis: What’s Available, What’s Needed? 125

I

I

City, attendees at the Austin Self-Help Senior Center in Forest HiIIs, New York, and members of the Stamford, Connecticut Chapter of the American Association of University Women

Staff of the Osteoporosis Center and physicians from the Metabolic Bone Disease Service also made

presentations about osteoporosis at worksites in New York City and elsewhere Presentations were made

for example, to employees at NBC, United Way, and the Hotel Worker’s Union in New York City Some African American women came to these presentations to learn about their risk of osteoporosis The presence

of these women made the center staff painfully aware of the exclusive focus on white people in most osteoporosis information materials and the need for materials that Include African American and other persons

who are also at risk (28)

In 1990, Dr. Joseph Lane, medical director of the Metabolic and Bone Disease Service, was interviewed

about osteoporosis on Channel 5 News in New York City The Osteoporosis Center received 500 calls for

Information in the first two days following the Interview (28)

The hospitals Community Education Department has found that osteoporosis IS a popular topic for public Information and community presentations When the department surveyed 75 local institutions to find

out what topics they wanted information about, osteoporosis was the second most frequently identified topic, following back problems (101)

Until 1989, the hospitals public Information materials and programs were directed primarily to older

people Since then, however efforts have been made to reach younger people, including young women

who are at risk of osteoporosis because of amenorrhea caused by eating disorders and excessive exercise

(101)

The Osteoporosis Center refers people to the National Osteoporosis Foundation and other organizations

for further information and in turn receives referrals from these organizations The center coordinator IS

aware of several other hospitals and medical centers nationwide that have osteoporosis centers and

wishes she had time to visit these other centers to learn more about their public, patient, and professional

education and training programs and patient assessment, counseling, and referral procedures (28)

SOURCE Off Ice of Technology Assessment 1994, from sources ctted n the text and Ihsted In the references section

I

L-- — ——.

.

National Dairy Promotion and

Research Board

The National Dairy Promotion and Research

Board is an advisory board of the U.S. Department

of Agriculture. The board was established by Congress in 1983 to promote consumption of dairy

products and thereby reduce milk surpluses. The

board consists of 36 dairy producers appointed by

the Secretary of Agriculture to represent all dairy

producers in the United States. The board develops and implements research, marketing, and

education projects to increase the use of dairy

products. To finance its activities, the board collects fees from dairy farmers based on the amount

of milk they market. In fiscal year 1990, the

board’s assessment revenue and interest income

totaled $77 million (79).

In fiscal year 1990, the National Dairy Promotion and Research Board spent $9.5 million--

about 12 percent of its budget—for product

research to develop new dairy products and improve existing products and nutrition research to

examine the role of dairy nutrients–-especially

calcium—in human health (79). Most of the remainder of the board annual budget was spent on

advertising to promote nonbrand dairy products.

The public information produced and distributed by the National Dairy Promotion and Research Board focuses on nutrition and the

importance of dairy products for a balanced diet
26 I

and

Public information About Osteoporosis: What’s Available, What’s Needed?

good health. One television advertising campaign was produced by the board in response to a

study that revealed a substantial decline in milk

consumption after age 11 and a greater decline after age 17. The advertising campaign used the slogan, “Milk. It Does a Body Good,” to persuade

young people that milk will help them grow up to

be healthy and physically fit. Another print advertising campaign was produced by the board to

convince women aged 25 to 54 that eating a variety of dairy products is the preferred way to get

their recommended daily calcium allowance (80).

Some of the public information produced and

distributed by the National Dairy Promotion and

Research Board focuses on osteoporosis. In 1988,

for example, the board and the Cooperative Extension Service of the U.S. Department of Agriculture jointly sponsored the “Calcium for the Prime

of Your Life” program to inform people over age

50 about the importance of dairy calcium to maintain bone strength and reduce the risk of osteoporosis (78). A public relations firm produced and

distributed the program materials to Cooperative

Extension Service agencies throughout the country. The program was used by many other organizations, including AARP, the American Red

Cross, senior centers, retirement centers, alumni

groups, women’s clubs, garden clubs, civic clubs,

adult education groups, churches, libraries, hospitals, health clubs, and corporate health programs

(39).

Also in 1988, in conjunction with National Osteoporosis Prevention Week, the board sponsored

a television public service announcement that

identified osteoporosis as ● ’a crippling bone disease that causes pain, disability, and in some cases

may lead to death.” The announcement counseled

that “. . . osteoporosis may be prevented with

proper diet and exercise” and offered viewers a

free brochure entitled, "Os-te-o-po-ro-sis.” Some

versions of the announcement featured the name

and address of a local congressman from whom

viewers could request the osteoporosis brochure.

The board also supports professional education

activities. It sponsors scientific and consensus development meetings and pays for the publication

of reports from some of these meetings. For several years, the board sponsored advertisements in

professional journals targeted to pediatricians,

general and family practitioners, obstetricians/gynecologists, and dietitians to inform them about

the nutritional benefits of dairy products. The advertisements included an order form for free patient education brochures, some of which discuss

osteoporosis. The advertisements were discontinued in 1992, in part because they were perceived

as having limited impact (73).

United Dairy Industry Association

The United Dairy Industry Association, established in 1971, coordinates activities and manages

funds for two organizations: the American Dairy

Association and the National Dairy Council. The

American Dairy Association is a federation of 19

regional and state dairy farmers’ associations

created in 1940 to conduct advertising campaigns

for nonbrand dairy products. The association

sponsors television and radio commercials to promote dairy products. These commercials often focus on the benefits of dairy calcium to build and

maintain strong bones but generally do not mention osteoporosis specifically (11 4).

The National Dairy Council, established in

1915, produces nutrition education materials and

conducts nutrition education programs for health

professionals, educators, and the public. The

council has a national office, 22 affiliated Dairy

Council units, and 68 area offices (73).

The nutrition education materials and programs produced by the National Dairy Council

target a wide range of audiences, from young children to elderly people. The council’s 1992 “Nutrition Education Catalogue” lists a variety of

nutrition education materials for preschool and

school-aged children, including programs to be

offered by schools as part of classroom curricula

or by community youth groups, such as the 4-H

Club, the Boys Scouts, the Girl Scouts, and the

Future Homemakers of America (77). These programs emphasize calcium’s role in bone development, growth, and maintenance throughout life.

The nutrition education materials for preschool

and school-aged children that are currently offered
Public Information About Osteoporosis: What’s Available, What’s Needed? 127

by the National Dairy Council include the following:

●

■

■

❑

■

■

“Food . . . Early Choices,” for preschool and

kindergarten students, includes a poster, booklet, puzzles, and food identification cards to

teach students where and how we get our foods.

‘“Food . . . Your Choice,” for elementary school

students, begins with simple concepts such as

“food helps me grow . . . gives me energy . . .

keeps me healthy,” and progresses to detailed

instruction about food groups, nutrients, calories, and the U.S. recommended daily allowance (RDA) guidelines.

“Super You: A Guide to Getting Fit and Staying

Fit,” for 9- to 11-year-olds, offers a 24-page

“Super You" booklet with games, activity

ideas, nutrition information, nutrition puzzles,

snack recipes, and a “Superkids” poster.

"Smart Moves,” for junior and senior high

school students, includes a videotape, a poster,

and a 16-page booklet that helps students record and analyze their eating and exercise habits.

“Food Power: A Coach’s Guide to Improving

Performance ," for coaches, particularly of athletes in grades 11 and 12, discusses training

diets, pre-competition meals, carbohydrate

loading, and effects of dehydration on performance.

“You: A Guide to Food, Exercise, and Nutrition” for young men and women, particularly

those in grades 11 and 12 (separate editions for

men and women ), contains information about

achieving and maintaining nutritional and

physical fitness (77).

The National Dairy Council also develops

nutrition education programs for adults. One of

these programs is a 15-minute videotape, "Osteoporosis and You,” that discusses the incidence and

symptoms of osteoporosis; describes the effects of

smoking, alcohol, and stress on bone health; and

recommends calcium-rich foods and regular exercise to build and maintain strong bones (77).

The National Dairy Council produces an

8-page brochure, “Osteoporosis: Are You at

Risk,” which is targeted to women and helps them

assess whether they are at risk for osteoporosis. A

Spanish version of the brochure is also available—the only Spanish-language public information about osteoporosis that OTA has seen. Other

brochures produced by the National Dairy Council that discuss osteoporosis include "For Mature

Eaters Only: Guidelines for Good Nutrition,”

“Every Woman Guide to Health and Nutrition,”

and “’The All-American Guide to Calcium-Rich

Foods” (77).

The National Dairy Council’s public information materials and programs are updated periodically, and some are discontinued, although older

materials and programs may remain in circulation

until supplies are exhausted. Many of the materials and programs have received awards from organizations such as the American Dental

Association. the American Academy of Family

Physicians Foundation, the National Education

Association, and the American Federation of

Teachers (77).

The National Dairy Council sponsors a Visiting

Professor/Speakers Bureau program that provides

expert spokespersons on a variety of topics, including osteoporosis. The council also produces

nutrition education programs and materials for

health care professionals and educators. Some of

its area offices offer special nutrition education

programs. In 1990. for example, the Dairy Council of Greater Metropolitan Washington, Inc. offered workshops for teachers and youth group

leaders to prepare (hem to present the council’s

programs ( 1 7).

The National Dairy Council also publishes

scientific reports and summaries of scientific articles related to dairy products and calcium. A recent issue of Dairy Council Digest, the council's

newsletter that reviews nutrition research, summarized recent research on women health issues,

including osteoporosis (76).

Information Available from

Pharmaceutical Companies

Pharmaceutical companies inform the public

about osteoporosis primarily to promote the use of

medications to prevent and treat the disease. The
281 Public Information About Osteoporosis: What’s Available, What’s Needed?

companies may produce and distribute public information materials and programs themselves or

hire a public relations firm to conduct these activities. Some pharmaceutical companies also pay for

public information materials and programs that

are produced and distributed by other organizations.

By increasing the availability of public information about osteoporosis, pharmaceutical

companies can generate greater public awareness

and concern about the disease and thereby expand

the market for their products. Other methods of

expanding the market for the products are limited

by FDA regulations that prohibit pharmaceutical

companies from engaging in the following practices:

■ promoting prescription medications that have

not been approved by FDA,

~ promoting unapproved indications for approved medications, and

■ providing promotional information that is

false, misleading, or selective (45).

FDA regulations require that promotional information about an approved medication must include a “brief summary” of its contraindications

and side effects (45).

Greater public awareness and concern about osteoporosis is likely to benefit all pharmaceutical

companies that have or are developing osteoporosis medications. The few companies that have approved prescription medications for osteoporosis

are likely to benefit immediately. Companies that

do not yet have an approved medication for osteoporosis are likely to benefit eventually from the

impact of greater public awareness and concern

about the disease. Companies that have a medication that has been approved for other indications

but not osteoporosis may also benefit if people

who are concerned about osteoporosis go to their

physician and the physician happens to know

about the medication and prescribe it or if people

learn about the medication from the mass media or

another source and ask their physician to prescribe

it. These benefits are likely to occur even if the

companies” products are not mentioned specifically in public information materials.

Each year, some pharmaceutical companies

provide funding for the development of educational materials for National Osteoporosis Prevention Week. In addition, many pharmaceutical

companies produce or pay for other public information materials. In 1989, Wyeth-Ayerst Laboratories, which produces an estrogen medication

that is approved for osteoporosis, published an

educational brochure, “What You Should Know

About Osteoporosis.” The brochure discusses

menopause-induced estrogen deficiency as a

cause of osteoporosis but does not mention any

specific medication.

In 1991, Rhone-Poulenc Rorer Pharmaceuticals, Inc., which has a calcitonin medication that

is approved for osteoporosis, published two

educational brochures. “Postmenopausal Osteoporosis: Prevention” describes osteoporosis and

its risk factors and mentions calcium, vitamin D,

exercise, and estrogen therapy as ways to prevent

it. “Postmenopausal Osteoporosis: Treatment”

describes osteoporosis, emphasizes the seriousness of the disease, and discusses estrogen therapy

and calcitonin as the two possible ways of halting

its progression. Neither of the brochures mentions

a specific medication.

Sandoz Pharmaceutical Corporation, which

has an injectable calcitonin medication that is approved for osteoporosis and a nasal calcitonin

medication that is not approved for osteoporosis,

paid for the 1989 version and the 1991 revision of

‘*Boning Up on Osteoporosis,” the informational

booklet mentioned earlier that was developed by

the Osteoporosis Center at the University of Connecticut’s Health Center in cooperation with the

National Osteoporosis Foundation. The 1989

booklet notes that calcitonin is approved by the

FDA for the treatment of osteoporosis but is only

available at present by injection. It states that ‘*nasal calcitonin is expected to be available in the future” (81). The 1991 booklet describes nasal

calcitonin as an investigational treatment that has

● ’been shown to be effective over a two-year period in preventing spinal bone loss in women immediately after menopause” (82).
Public Information About Osteoporosis: What’s Available, What’s Needed? 129

In 1991, Norwich Eaton Pharmaceuticals, Inc.

(now Procter and Gamble Pharmaceuticals),

which produces etidronate, published a brochure,

“Osteoporosis: Am I at Risk.” The brochure describes osteoporosis and the role of calcium in

building and maintaining strong bones but it

points out the calcium is “only part of the story.”

The brochure includes a risk factor checklist and

advises people who find themselves at risk to consult with their physician. The brochure does not

mention any specific medication.

Marion Merrell Dow, Inc., which manufactures

a nonprescription calcium supplement, publishes

"Calcium Communique,” a newsletter that is

mailed to anyone who requests it. A 1991 issue includes articles about exercise, RDAs, and the effects of caffeine and excessive dieting on the

body’s store of calcium (64). FDA regulations

with respect to the promotion of prescription medications do not apply to nonprescription medications, and the newsletter explicitly promotes the

company’s calcium supplement. The issue contains a testimonial that favorably compares the

company’s calcium supplement to a generic calcium supplement. It also contains an article which

points out that although calcium-fortified orange

juice is a way of meeting one’s need for calcium,

one would have to drink almost a quart of juice a

day to provide the RDA for calcium. According to

the article, the same amount of calcium can be obtained from two tablets of the company’s calcium

supplement.

In addition to brochures. booklets, and newsletters, some pharmaceutical companies have sponsored multifaceted publicity campaigns to

increase public awareness and knowledge about

osteoporosis. In 1983, Ayerst Laboratories hired a

public relations firm to conduct a publicity campaign focused on reaching radio. television, and

magazine audiences with the message that osteoporosis is a major women’s health problem for

which there are remedies and that women at risk

should consult a physician. The campaign did not

promote a specific medication (38). Information

about osteoporosis. its risk factors, and the role of

calcium, vitamin D, weight-bearing exercise, and

estrogen therapy to reduce the risk of osteoporosis is

appeared in magazines, such as Vogue, McCalls,

Self, and Reader’s Digest (84). The campaign included a media tour of 10 cities by three osteoporosis experts to discuss osteoporosis in the context

of the conclusions of the 1984 NIH Consensus

Development Conference on Osteoporosis: one

conclusion of the conference was that “estrogen

replacement therapy is highly effective for preventing osteoporosis in women” (127).

The public relations firm developed a pamphlet, bearing Ayerst Laboratories’ name. that discussed decreased estrogen production after

menopause as a cause of rapid bone loss. The pamphlet did not mention any specific medication.

Ayerst Laboratories received over 100,000 requests for the pamphlet (38).

The public relations firm also arranged with the

Nurses Association of the American College of

Obstetricians and Gynecologists (NAACOG) to

conduct “nurse to health professional” and “nurse

to public” osteoporosis seminars, The firm set up

an advisory panel, consisting of osteoporosis experts, NAACOG members, and a consumer representative, to develop the educational content for

the seminars. The seminars used a slide/script format that discussed osteoporosis. its risk factors.

and prevention strategies such as adequate calcium intake, weight-bearing exercise, and estrogen therapy. Ayerst Laboratories was not

identified in the educational materials (84).

NAACOG initially presented the seminars to

nurses and other health professionals in order to

motivate and prepare them to present the public

seminars. Thereafter, the slide/script materials for

the public seminars were distributed to NAACOG

members and other interested health professionals. Osteoporosis seminars were presented at adult

day centers, churches, and women’s clubs. The total number of seminars presented during the campaign is not known (6,38).

In 1990, the American Osteoporosis Alliance,

an association of pharmaceutical companies that

had or were developing osteoporosis medications,

hired a public relations firm to conduct a publicity

campaign to increase public awareness and understanding about osteoporosis. The public relations

firm launched the campaign by generating media
30 I Public Information About Osteoporosis: What’s Available, What’s Needed?

coverage of a 1990 conference “Research Advances in Osteoporosis. ” The firm issued press

kits, arranged press conferences and media interviews with osteoporosis experts, and developed a

background videotape about osteoporosis. The

firm also publicized the 1990 National Osteoporosis Prevention Week by inviting media reporters

to attend a luncheon sponsored by the National

Osteoporosis Foundation and issuing a press release to reporters not in attendance. During 1990

and the first half of 1991, the firm developed and

distributed to the media National Osteoporosis

Foundation position statements on research findings. The position statements typically referred

readers to the foundation for additional in formation.9

As noted at the beginning of this background

paper, several recent commentaries have expressed concerns about some of the ways pharmaceutical companies use the mass media to promote

prescription medications directly to consumers

( 16,45). It is said that in some instances, promotion of prescription medications through a media

news event is intended to evade FDA regulations

for the promotion of prescription medications,

i.e., regulations requiring that promotional activities be truthful and balanced, regulations prohibiting pharmaceutical companies from promoting

prescription medications that have not been approved by the FDA, and regulations prohibiting

pharmaceutical companies from promoting approved medications for unapproved indications

( 16,45). The FDA regulations do not apply unless

a promotional event is sponsored by the company

that manufactures the medications in question. In

some instances, however, the sponsorship of these

events is unclear.

In addition to mounting publicity campaigns,

some pharmaceutical companies use paid advertising to promote osteoporosis products to the

public.

10 Thus far, most

been for nonprescription

of the advertising has

calcium supplements.

One example is an advertisement that promoted a

calcium supplement that “contains more calcium

than a half-quart of milk” (52). Another example

is an advertisement for an antacid tablet that contains calcium. The advertisement showed newspaper headlines from the Wall Street Journal, USA

Today, and the New York Times citing the benefits

of calcium for osteoporosis and said that two tablets of the antacid ● *can help prevent osteoporosis”’

( 108). A third example is an advertisement that offered readers a free "Stand Up to Osteoporosis”

booklet in return for completing a questionnaire

indicating whether they use calcium supplements

and, if so, what brand they use (63). Half of the

18-page booklet is devoted to a discussion of calcium and a favorable description of the company's

calcium supplement; the other half includes an osteoporosis risk assessment and a discussion of

bone biology, osteoporosis, and the role of estrogen and exercise in reducing the risk of osteoporosis.

Since 1985, the FDA has allowed direct advertising of approved prescription medications. In

1991, Wyeth-Ayerst Laboratories conducted a

3-month print advertising campaign for its estrogen medication. The advertisement, which appeared in magazines, such as Better Homes and

Gardens, In Health, Lears, McCalls, Prevention,

and Readers’ Digest, featured a picture of four

middle-aged women and the message, "One out of

four women over 50 will get osteoporosis." The

advertisement advised women that the company

estrogen medication is the most effective way to

prevent osteoporosis and urged readers to contact

an “osteoporosis information center” by mail or

by a toll-free telephone number for free information. Women who contacted the center received a
Public Information About Osteoporosis: What’s Available, What’s Needed? 131

cover letter, an insert from the National Osteoporosis Foundation, and a brochure, “What You

Should Know About Estrogen Deficiency and Osteoporosis.” The brochure briefly explains osteoporosis in the context of menopause and declining

estrogen production but is essentially an advertisement for the estrogen medication. Both the

magazine advertisement and the brochure included the ● ’brief summary” of contraindications

and side effects that is required by the FDA. The

National Osteoporosis Foundation’s insert outlined the consequences of osteoporosis and urged

women over 50 to consult with their physician

about steps to prevent osteoporosis. The cover letter included a certificate that offered a free exercise videotape to women who had the certificate

signed by a physician indicating that a consultation had occurred. The certificate asked women to

indicate whether their physician prescribed a medication and, if so, to specify the name of the product. The offer for the free exercise tape expired

May 1, 1991. For proprietary reasons, the number

of women who contacted the osteoporosis information center is unavailable. One in 10 women

who requested information from the center returned the certificate with a physician’s signature

indicating that a consultation had occurred (38).

The appropriateness of direct-to-the-consumer

prescription drug advertising has been vigorously

debated over the last decade. Authorities familiar

with the issue describe the debate as follows:

Pharmaceutical companies argue that prescription drug advertising meets the increasing

consumer demand for health information, alerts

consumers to new treatments, encourages

people to seek medical advice for conditions

that would otherwise go untreated, and generally results in a more informed public. Others argue that advertising prescription drugs to

consumers interferes with the physician-patient

relationship, confuses consumers, increases the

cost of drugs, puts undue emphasis on pharmacological treatments alternatives, pressures

physicians to prescribe products, and results in

unnecessary drug use (45).

In some instances, it may be easier for consumers

to evaluate the information in an obvious advertisement than information that is presented as

news but is actually promotional information

sponsored by a pharmaceutical company.

1 Public Information About Osteoporosis

Available from Federal and State

Government Agencies

Many federal agencies conduct activities to inform the public about osteoporosis. Most of these

agencies—i.e., the National Institutes of Health,

the Food and Drug Administration, the Centers

for Disease Control and Prevention, the Office of

Disease Prevention and Health Promotion, the Office of Women’s Health, and the Administration

on Aging—are part of the U.S. Department of

Health and Human Services. In addition, the U.S.

Department of Agriculture educates the public

about osteoporosis through its Cooperative Extension System. A description of these federal activities follows. Also described are the activities

of several states that have conducted osteoporosis

public information campaigns.

Information Available from the National

Institutes of Health

The National Institutes of Health (NIH) are part of

the U.S. Department of Health and Human Services. Four of the institutes—the National Institute of Arthritis and Musculoskeletal and Skin

Diseases, the National Institute on Aging, the National Institute of Diabetes and Digestive and

Kidney Diseases, and the National Institute of

Dental Research--conduct public information activities related to osteoporosis. The NIH Office of

Research on Women’s Health also plays a role in

increasing public awareness of osteoporosis, primarily because of media coverage of issues pertaining to women’s health research.

National Institute of Arthritis and

Musculoskeletal and Skin Diseases

The National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) provides the

majority of the federal government funding for

osteoporosis research. NIAMS has sponsored numerous osteoporosis workshops and conferences,
32 I Public Information About Osteoporosis: What’s Available, What’s Needed?

including a 1987 workshop, “Research Directions

in Osteoporosis,” a 1990 conference, “Research

Advances in Osteoporosis,” a 1993 workshop,

“Osteoporosis and Oral Bone Loss,” and a 1994

symposium, “Osteoporosis: Research Advances

and Clinical Applications.” Although intended

primarily for scientists and health care professionals, these workshops and conferences often result

in media reports that inform the public about osteoporosis.

NIAMS’ Office of Scientific and Health Communications and the National Arthritis and Musculoskeletal and Skin Disease Information

Clearinghouse distribute information about osteoporosis and conduct osteoporosis education

activities for health care professionals and the

public. As noted at the beginning of this background paper, NIAMS expects to select an organization to function as the congressionally

mandated resource center on osteoporosis and related bone disorders by September 1994. After the

organization is selected, NIAMS will coordinate

the functions of its information clearinghouse and

the new resource center to eliminate duplication of

effort between the two entities (69).

As of May 1994, the National Arthritis and

Musculoskeletal and Skin Disease Information

Clearinghouse maintains a database of osteoporosis education materials and publishes annotated

bibliographies of osteoporosis literature for scientists, health care professionals, and the public. It

also compiles osteoporosis information packets

containing review articles and commentaries.

NIAMS published a booklet, “Osteoporosis:

Cause, Treatment, Prevention,” that has been distributed to more than 100,000 people. As noted

earlier, NIAMS also copublished a booklet, “Boning Up on Osteoporosis,” with the Food Marketing Institute. Both publications explain

osteoporosis and its causes; discuss estrogen therapy, calcium, vitamin D, and weight-bearing exercise; and suggest ways to prevent falls and

fractures. The former also reviews therapies, such

as calcitonin, sodium fluoride, vitamin D, anabolic steroids, and parathyroid hormone, and discusses current research on osteoporosis. Both

publications refer the reader to the National Osteoporosis Foundation for additional information.

NIAMS produced a videotape and booklet,

“Osteoporosis,” based on a 1989 presentation by

NIAMS’ director for the NIH "Medicine for the

Layman” lecture series. NIAMS also prepares

news releases about recent research findings and

the results of scientific conferences.

The National Arthritis and Musculoskeletal

and Skin Disease Information Clearinghouse and

NIAMS' Office of Scientific and Health Communications respond to written and telephone inquiries concerning osteoporosis. The clearinghouse

handles general questions about osteoporosis, and

the Office of Scientific and Health Communication handles questions requiring a more detailed

or technical response (1 36). Between July 1 and

September 30, 1990, 92 people contacted the

clearinghouse for general information about osteoporosis: 30 people received NIAMS information packets, and 62 people received the booklet,

“Osteoporosis: Cause, Treatment, and Prevention.” During the same interval, 38 people contacted the NIAMS Office of Scientific and Health

Communication and received responses to their

specific questions about osteoporosis, including

questions about estrogen therapy, etidronate, calcium, calcitonin, vitamin D, and bone density

testing. Both the clearinghouse and the Office of

Scientific and Health Communication refer callers to the National Osteoporosis Foundation for

further information.

National Institute on Aging

The National Institute on Aging (NIA) conducts

and supports research related to the aging process

and its physical, psychological, and social effects

on older people-including research on osteoporosis, nutrition, exercise, hip fractures, and strategies for reducing falls and fractures. NIA

cosponsored the 1987 workshop, “Research

Directions in Osteoporosis,” the 1990 conference,

“Research Advances in Osteoporosis,” and the

1994 symposium, “Osteoporosis: Research Advances and Clinical Applications.”
Public Information About Osteoporosis: What’s Available, What’s Needed? 133

NIA provides the public with information

about osteoporosis through its Public Information

Office and a contract clearinghouse. The clearinghouse functions as the “National Institute on Aging In formation Center,” responding to requests

for NIA publications. The publications, which are

prepared by the Public Information Office, include a 30-page booklet, “Menopause, ” that describes osteoporosis and its risk factors, suggests

calcium, vitamin D, and exercise to prevent it. and

discusses the benefits and risks of estrogen therapy. The Public Information Office also publishes

one-page fact sheets, called "Age Pages," that offer practical advice on health promotion and preventive care for older people. One Age Page,

‘-Osteoporosis: The Bone Thinner,” briefly describes osteoporosis and its risk factors, recommends calcium, vitamin D, and weight-bearing

exercise to prevent it, mentions estrogen therapy,

sodium fluoride, calcium, and vitamin D as ways

to slow or stop bone loss, and suggests ways to

treat osteoporosis-related fractures. Other Age

Pages that mention osteoporosis include “Should

You Take Estrogen.” “Managing Menopause,”

“Preventing Falls and Fractures,” "Nutrition: A

Lifelong Concern,” " Dietary Supplements: More

Is Not Always Better, “ “Smoking: It’s Never Too

Late to Stop,” and “Don’t Take It Easy—Exerc i se. ”

NIA developed a pamphlet. “Women and Osteoporosis,” that was published by Peoples Drug

Stores, Inc. as part of its "Living With Aging”

pamphlet series and distributed by its 800 drug

stores. The pamphlet contained a brief overview

of osteoporosis and its risk factors and urged readers to seek advice from their physician about calcium. vitamin D, estrogen therapy, and sodium

fluoride as possible means of prevention.

The NIA Public Information Office also prepares consensus conference statements, news

releases, and articles about NIA-supported osteoporosis research. These materials are distributed

to the media, other federal government agencies,

and the public.

The NIA Public Information Office responds to

written and telephone inquiries about osteoporosis. The office keeps no formal count of the number of requests it receives for osteoporosis

information, but in 1991, an NIA spokesperson

estimated it to be similar to the number received

by NIAMS (75). If a request is for general information, the office usually mails the inquirer

NIA’s Age Page on osteoporosis and other general

materials. If the request is for specific information

about a new development in osteoporosis prevention or treatment, the office includes professional

journal articles on the topic. If the request is for information about research being conducted by

another institute. the office refers the inquirer to

the appropriate institute. The office also refers inquirers to the American College of Obstetricians

and Gynecologists for information about estrogen

therapy and to the National Osteoporosis Foundation for information about osteoporosis diagnosis

and treatment strategies (75).

In 1993, NIA jointly sponsored with AARP a

workshop on disseminating public information

about menopause, in conjunction with an NIH

conference, "Menopause: Current Knowledge

and Recommendations for Research." The workshop focused on problems and strategies for the

dissemination of public information about menopause. Its conclusions and recommendations apply to information about the effects of menopause

on bone as well as other body tissues and organs

(l).

National Institute of Diabetes and

Digestive and Kidney Diseases

The National Institute of Diabetes and Digestive

and Kidney Diseases (NIDDK) conducts and supports research on endocrine and metabolic disorders that contribute to osteoporosis. NIDDK

cosponsored the 1984 "National Institutes of

Health Consensus Development Conference on

Osteoporosis,” the 1987 workshop, "Research

Directions in Osteoporosis,” the 1990 conference

“’Research Advances in Osteoporosis,” and the

1994 symposium, “Osteoporosis: Research Advances and Clinical Application s.”

Since 1986, when NIAMS became a separate

institute and ceased to function as a division of
34 I Public Information About Osteoporosis: What’s Available, What’s Needed?

NIDDK, most inquiries about osteoporosis go to

NIAMS. As of early 1991, NIDDK’s Information

Office was receiving only 25 to 30 osteoporosis

inquiries a year. For questions related to endocrine

or metabolic effects on bone, a NIDDK spokesperson will advise the caller. Otherwise, the caller

is referred to NIAMS or the National Osteoporosis Foundation ( 107).

National Institute of Dental Research

The National Institute of Dental Research (NIDR)

conducts and supports research on bone biology

and metabolic bone diseases that affect oral and

facial tissues. NIDR cosponsored the 1993 workshop, “Osteoporosis and Oral Bone Loss,” and the

I 994 symposium, “Osteoporosis: Research Advances and Clinical Applications. ” As noted earlier, these workshops and symposia are intended

primarily for scientists and health care professionals but mass media coverage of their findings may

increase public awareness and knowledge about

osteoporosis.

Office of Research on Women’s Health

The NIH Office of Research on Women’s Health

was established in 1990 to enhance research on

diseases and conditions that affect women, ensure

that women are included as subjects in clinical research, and increase career opportunities for

women in scientific and clinical research (47).

Providing public information about osteoporosis

is not a primary function of the office, but mass

media coverage of its activities—particularly its

efforts to identify gaps in knowledge about

women’s health and initiate and support research

to address the gaps—increases public awareness

of osteoporosis.

The Office of Research on Women’s Health

collaborates with other offices and institutes at

NIH on the “Women’s Health Initiative,” a

15-year, three-part study that will eventually involve 40 to 45 research centers national] y and cost

$625 million. The study focuses on the effects of

low-fat diets, calcium, vitamin D, and estrogen

and progestin therapy on the incidence of cancer,

cardiovascular disease, and osteoporotic fractures

in women.11 Mass media reports on this study arid

public presentations by staff of the Office of Research on Women’s Health about the study and

other NIH-funded research on women’s health issues call attention to osteoporosis as a women

health issue and increase public awareness, if not

knowledge, about the disease.

Information Available from the

Food and Drug Administration

As part of its mandate to promote and protect the

public health, the Food and Drug Administration

within the U.S. Department of Health and Human

Services produces osteoporosis information for

health professionals and the public and conducts

osteoporosis education programs. In 1983, the

FDA initiated a “Women’s Health Initiative” to

focus attention on women’s health issues—including osteoporosis. In 1986, the agency sponsored a "National Conference on Women’s

Health” that underscored osteoporosis as a public

health problem and laid the groundwork for the

agency’s 1987 “Special Topic Conference on Osteoporosis.” The 1987 conference was intended to

establish a baseline of reliable information about

osteoporosis and to outline key educational messages about bone loss, bone density testing, nutrition, exercise, and other methods of prevention

and treatment. Proceedings of the two conferences

I I ~e [hrcc pa~5 (Jfthc wonl~n’s Health Initiative are 1 ) a cllnlcal trial, involving 57,000 women ages 50 to 79, that will evaluate the ~ffe~:-

[i\eness of hwfat diets, calcium, vitamin D, and csm)gen and progestin therapy in preventing cardiovascular disease and osteopm)tic fractures; 2 ) an (~bscrvatitmal c(mlponent, irrt (Jlving 100,000 postmenopausal women, that will detemline the risk factors for cancer, cardi(wascul:ir

disease, and (~stm)pmjtic fractures, ,and 3) a c(mm]un ity ]ntcrventi(m study that will evaluate various ways of improving health-related bchav -

i(~rs in w{)n]cn iige 45 and over. Fractures w ill be tracked in subjects at all centers, and three of the research centers will ct~l lect infomlati(m ah)ut

sub}’cts’ txme density at the hip and ~pinc. B~mc density data wil I he ak ai Iable f(w atxmt 10,000 subjects.
Public Information About Osteoporosis: What’s Available, What’s Needed? 135

were published as supplemental issues of Public

Health Reports, the U.S. Public Health Service’s

magazine for health care professionals and public

health educators (1 18,120).

The FDA’s Office of Consumer Affairs handles

written and phone requests for osteoporosis information. The office keeps no formal count of the

number of inquiries about osteoporosis it receives, but a spokesperson estimated in 1991 that

the number was considerably less than the 130 osteoporosis inquiries received in a three-month period by NIAMS (31). Most requests were for

general information about osteoporosis. Requests

of a more technical nature—for example, side effects of a medication used to treat osteoporosis--

were referred to another FDA office that is expert

in that area.

The FDA has consumer affairs officers located

in field offices nationwide. The consumer affairs

officers conduct health education programs

throughout the year, and FDA publications that

discuss osteoporosis are distributed to people who

attend these programs (31).

In 1993, the FDA completed its evaluation of

the relationship between calcium intake and osteoporosis and issued regulations for allowable

health claims, as required by the Nutrition Labeling and Education Act of 1990 ( 124). The regulations allow the labels on food products that

contain calcium to state that inadequate calcium

intake in early life contributes to low peak bone

mass and that adequate calcium intake may be

helpful in reducing bone loss later in life. According to the regulations, the labels must make clear

that calcium intake is not the only factor that affects the development of peak bone mass or the

loss of bone with age; that the risk of osteoporosis

varies for different subgroups of the population;

and that calcium intake above 200 percent of the

recommended daily amount has no additional

benefit for bone health (23, 124). To the extent that

food manufacturers decide to make claims about

the relationship between calcium intake and osteoporosis on their product labels, these labeling

requirements are likely to increase public awareness of osteoporosis.

The labeling requirements for claims about the

relationship between calcium intake and osteoporosis are only one component of the FDA’s new

food labeling regulations. To help consumers understand the food labels required by the new regulations, the FDA and several other public and

private organizations have initiated a public information campaign (88). The campaign will include public service announcements. the

distribution of public education materials, and the

establishment of consumer hotlines for food labeling information. This public information campaign is also likely to increase public awareness of

osteoporosis.

Lastly, the FDA is the federal agency that evaluates prescription medications for safety and efficacy. The FDA division that evaluates

medications for osteoporosis drugs has an advisory group, the Endocrinologic and Metabolic

Drugs Advisory Committee. As noted in box 2 at

the beginning of this background paper, in 1991

the Endocrinologic and Metabolic Drugs Advisory Committee reviewed the findings of the available research on etidronate and recommended that

the FDA not approve etidronate for osteoporosis.

The FDA decided to follow the committee’s recommendation.

The FDA generally does not notify the public

of its decisions to approve or not approve particular medications, except in life-threatening situations. To OTA’s knowledge, the FDA’s 1991

decision not to approve etidronate for osteoporosis was not presented to the general public in any

way. The decision was reported in pharmaceutical

industry newsletters and has been discussed at

professional meetings and conferences. Anecdotal evidence suggests. however, that some physicians who prescribe etidronate for osteoporosis

may not be aware of the decision. As of May 1994.

the company that manufacturers etidronate continues to meet with the FDA, and it is possible that

new evidence for the efficacy of the medication

could result in its approval in the future. Given

this context, however, OTA believes that the

claim, which has been made in some public forums, that FDA “inaction and indecisiveness” are
36 I Public Information About Osteoporosis: What’s Available, What’s Needed?

holding up the approval of etidronate is misleading. 12

In 1991, the FDA’s Endocrinologic and Metabolic Drugs Advisory Committee also reviewed

the findings of a five-year post-marketing study of

calcitonin, a medication that was approved by the

FDA in 1984forosteoporosis. The study found an

increase in bone density and a higher rate of new

spinal fractures in subjects who received calcitonin compared with subjects who did not receive

calcitonin (126). The company that produces calcitonin and the Advisory Committee agreed that

the study was so poorly conducted that its findings

could not be used to determine the efficacy of calcitonin in reducing fracture rates. The Advisory

Committee voted unanimously to recommend

that the FDA revise the labeling requirements for

calcitonin to reflect the lack of evidence that it prevents fractures, and the FDA followed that recommendation. To OTA’s knowledge, the revised

labeling requirements and the reasons for the

changed requirements were not presented to the

general public in any way, although, as in the case

of etidronate, the transcript of the advisory committee meeting is available to the public, and the

decision was reported in pharmaceutical industry

publications. As of 1994, public information

about osteoporosis continues to note correctly that

calcitonin is an approved medication for osteoporosis but fails to point out the revised labeling requirements with respect to the lack of evidence

that calcitonin reduces fractures.

Information Available from the Office of

Disease Prevention and Health Promotion

The Office of Disease Prevention and Health

Promotion (ODPHP) within the U.S. Department

of Health and Human Services coordinates federal

health promotion activities. ODPHP has coordinated the development of several reports related to

osteoporosis. One of these reports, The Surgeon

General’s Workshop: Health Promotion and Aging, has a chapter on skeletal diseases and recommends increased calcium intake for girls and

young women (1 19). A second report, Healthy

People 2000: National Health Promotion and

Disease Prevention Objectives, includes recommendations to increase public awareness of osteoporosis and ways to prevent the disease(121 ).

ODPHP operates a “National Health Information Center.” The center refers people who write or

call with questions about osteoporosis to other organizations, including the National Osteoporosis

Foundation, the National Institute on Aging, the

National Institute of Arthritis and Musculoskeletal and Skin Diseases, the National Dairy Council,

the American College of Obstetricians and Gynecologists, and the National Women’s Health

Network (1 32).

In 1984, ODPHP initiated the "Healthy Older

Persons Campaign” to educate older people about

health practices that can reduce the risk of disabling illness. The campaign was part of a joint

initiative by the U.S. Department of Health and

Human Services and the Administration on Aging

to encourage public and private organizations at

the national, state, and community levels to work

together to provide health education to older

Americans. The campaign focused on six areas of

disease prevention: exercise, nutrition, safe use of

medicine, smoking cessation, injury prevention,

and preventive health services.

To implement the “Healthy Older Persons

Campaign,” ODPHP established contacts in each

state and helped to develop coalitions in most of

the states to implement the campaign. ODPHP developed broadcast and print materials, including

public service announcements, posters, and fact

sheets about disease prevention for older people

and provided samples of the materials to coalition

members along with technical assistance on how

to use the materials. The ● ’Healthy Older Persons

Campaign” is regarded as a successful model of a

public health education effort to encourage a specific group of people to adopt lifestyle habits that

decrease the risk of chronic diseases. When the
Public Information About Osteoporosis: What’s Available, What’s Needed? 137

campaign ended in 1988, 43 states had participated in the campaign, and every state had a lead

agency to direct health education programs for

older people (61 ).

The “Healthy Older Persons Campaign” did

not address specific diseases, although the prevention messages about nutrition, exercise, and injury

prevention are similar to those recommended to

prevent osteoporosis. Some osteoporosis advocates point out, however, that since the campaign

did not link the prevention messages to specific

diseases, including osteoporosis, it probably did

not increase public awareness or knowledge about

the relationship between the recommended health

behaviors and the diseases (95).

Information Available from the

Office on Women’s Health

The Office on Women’s Health within the U.S.

Department of Health and Human Services, Office of the Assistant Secretary for Health, was established in 1991 to advise the assistant secretary

about scientific, medical, legal, ethical, and policy

issues relating to women’s health. The office is a

focal point for the coordination of federal activities with respect to women’s health. It was instrumental in developing the 1991 PHS Action Plan

for Women’s Health, which includes research and

prevention activities for osteoporosis (128). The

office is also responsible for monitoring implementation of the plan (65). The office has recent] y

begun to develop some public information materials about osteoporosis. In addition, as is true of the

NIH Office of Research on Women Health, mass

media coverage of the activities of the Office on

Women’s Health and public presentations by its

staff call attention to osteoporosis as a women

health issue and increase public awareness of the

disease.

h? formation Available from the Centers for

Disease Control and Prevention

The Centers for Disease Control and Prevention

(CDC) within the U.S. Department of Health and

Human Services develops national programs for

the prevention and control of communicable and

chronic diseases and implements them through

state and local health departments. The CDC has

funded osteoporosis-related research and is currently conducting a study of the incidence of osteoporosis-related fractures.

The CDC does not publish information about

osteoporosis for the public. Its public information

activities are informal and limited. In 1991, public

inquiries about osteoporosis were being answered

by the chief of the CDC’s Enzyme Research Center, Environmental Health, who reported responding to five to 10 inquiries a year. In addition to

using the CDC’s resources to provide answers to

questions about osteoporosis. callers were usually

sent National Osteoporosis Foundation publications and referred to the foundation’s Georgia

Chapter for additional information ( 109).

In 1991, the CDC provided funds to two states,

Colorado and New Jersey, for three-year osteoporosis projects that include public information

components. The project in Colorado involves the

development of an inventory of medical specialists, screening sites, support groups, and community agencies with programs for osteoporosis

prevention and treatment ( 13). The project in New

Jersey involves the provision of osteoporosis

education programs for elderly people in three

counties, the development of an osteoporosis resource manual, and the dissemination of osteoporosis information to the 116 local health

departments in the state (72).

Information Available from the

Administration on Aging

The Administration on Aging within the U.S. Department of Health and Human Services is the federal agency responsible for promoting the health

and well-being of older Americans. The agency

administers its policies and programs through a

nationwide network of state and community agencies, known as state units on aging and urea agencies on aging.

As previously mentioned, the Administration

on Aging provides funding for the National Resource Center on Health Promotion and Aging,

which is administered by AARP. The center is in-
38 I Public Information About Osteoporosis: What’s Available, What’s Needed?

tended to provide state units on aging and other

health care planners and health educators with

training, technical assistance, information, and

materials to implement health education programs for older people. It maintains a clearinghouse that distributes information packets on

topics such as nutrition, exercise, injury prevention, smoking, alcohol use, and safe use of medications. The center also publishes a newsletter,

Perspective in Health Promotion and Aging. Several issues of the newsletter, including one focused on men’s health, have mentioned

osteoporosis and referred readers to the National

Osteoporosis Foundation for additional information. The center is primarily a resource for state

units on aging and other aging network agencies,

and people who call with inquiries about osteoporosis are generally referred to the National Osteoporosis Foundation. The center also mails these

callers a brochure and order form for National Osteoporosis Foundation publications (74).

From 1987 through 1992, the Administration

on Aging provided funding to the National Osteoporosis Foundation to develop educational materials for National Osteoporosis Prevention Week.

The Administration on Aging has also distributed

the foundation’s educational resource kits to state

units on aging, which in turn may distribute them

to area agencies on aging, senior centers, and other

community organizations ( 11 2).

In 1990, the Administration on Aging helped to

fund public service announcements developed by

the National Osteoporosis Foundation. As noted

earlier, the public service announcements featured

Dr. Louis Sullivan, then-secretary of the U.S. Department of Health and Human Services, who

urged people to take steps to prevent and treat

osteoporosis and advised them to contact the

National Osteoporosis Foundation for the “Bonewise” osteoporosis information kit, described earlier. The brochures and fact sheets in the

"Bonewise” kit were also paid for by the Administration on Aging.

Area agencies on aging, as a rule, do not function as public information agencies (22), but OTA

is aware of several area agencies on aging that

have conducted osteoporosis education activities

either in conjunction with National Osteoporosis

Prevention Week or as part of other health education campaigns. For example, in conjunction with

the 1990 National Osteoporosis Prevention Week,

the Area XIV Area Agency on Aging in Creston,

Iowa, distributed National Osteoporosis Foundation publications and arranged for speakers from

the County Extension Service agency to speak

about osteoporosis and nutrition at senior nutrition sites.

In 1990, the Albuquerque Area Agency on Aging, in Albuquerque, New Mexico, sponsored a

series of health education programs on a television network that serves New Mexico, Colorado,

and parts of Arizona. The series included one program that featured an orthopedist who discussed

osteoporosis and its prevention and treatment and

a physical therapist who discussed ways to prevent falls and fractures. A second program featured a physician who discussed the beneficial

effects of estrogen therapy for osteoporosis (30).

The New York City Department for the Aging,

a department of municipal government and the

largest area agency on aging in the country, has offered information about osteoporosis to older

people through its health education program,

● ’Project Stay Well.” The program trains older volunteers (average age 64) to conduct 12-session

courses about a variety of health-related topics, including osteoporosis. Mini-courses, including

one about osteoporosis, are offered for older

people who do not want to participate in a full

12-session course. Educational materials from the

National Dairy Council and NIA’s Age Pages are

distributed to the course participants. The health

education programs are conducted at libraries, senior housing complexes, and senior centers. As of

January 1991, the program had 400 trained volunteers who had presented “Stay Well” programs to

over 3,000 older people at 82 sites in the city (26).

Information Available from the

Department of Agriculture

The U.S. Department of Agriculture (USDA) educates the public about osteoporosis through its

Cooperative Extension System, a nationwide net-
Public information About Osteoporosis: What’s Available, What’s Needed? 139

work consisting of the federal Cooperative Extension Service and state and county Cooperative

Extension Service agencies. Cooperative Extension Service agencies in Color-ado, Indiana. Kansas. Maryland, Minnesota, Nevada, New Mexico,

New York, North Carolina, West Virginia, and

Wisconsin have published fact sheets or brochures

about osteoporosis ( 11 6). Because these materials

are often produced for nutrition education programs, much of the information focuses on the

role of nutrition, especially calcium, in reducing

the risk of osteoporosis. For example, the University of Wisconsin/Madison Cooperative Extension Service offers four brochures: "Links

Between Nutrition and Osteoporosis,” “How To

Get Enough Calcium. “ “What To Do If You Are

Lactose Intolerant,” and “’Links Between Excessive Exercise, Weight Loss and Osteoporosis.”

The last brochure discusses the increased risk of

osteoporosis due to excessive exercise and notes

that men. as well as women, are at risk of osteoporosis.

Information Available from State

Osteoporosis Programs

As previously mentioned, Colorado and New

Jersey have CDC-funded projects to develop osteoporosis public information programs. The

New J ersey project involves the provision of osteoporosis education programs for elderly people

at senior nutrition sites. Early experience with

these programs has shown that the presentations

must be shorter than originally planned since the

attendees generally do not want to remain long after the meal (29). In the past year, the project has

also worked with the Girl Scouts on an osteoporosis-related badge (29).

In 1986, Wisconsin conducted a one-year, public information campaign. “Osteoporosis: Stop

the Ladykiller. ” The campaign, developed by the

Wisconsin Division of Health, consisted of three

parts: a multimedia campaign to increase public

awareness; training sessions for physicians and allied health professionals; and training sessions for

volunteers to enable them to conduct educational

outreach activities at the local level. The Wisconsin Division of Health worked with a public relations firm to develop public education messages

that declared that osteoporosis is a “Hipbreaker,

Humpmaker, Heartbreaker—Lady Killer” but can

be prevented. The messages were targeted to

women ages 18 to 65, physicians, pharmacists,

nurses, dietitians, and health educators ( 135),

Public service announcements were distributed

to 121 radio stations and 18 television stations. A

followup survey indicated that 57 percent of the

radio stations and 51 percent of the television stations aired the announcements that advised

women to consult their physician for information

about osteoporosis (135).

A consumer brochure was developed that discussed osteoporosis and its risk factors. The brochure was distributed by volunteers from local

public health agencies, health care organizations,

the University of Wisconsin-Extension Service.

the Dairy Council of Wisconsin, Inc., and other

agencies. Many of these agencies also conducted .

other public information activities, such as distributing posters, setting up information booths at

shopping centers and grocery stores, speaking at

community forums, and participating in workshops and health fairs ( 135).

Limited funding permitted the Wisconsin Division of Health to conduct the osteoporosis information campaign for only one year. The

campaign cost $400,000: the Division of Health

paid $20.000 for printing brochures, training volunteers, and incidental expenses, and the remaining costs were funded by individuals, companies,

and foundations (135).

CONCLUSION

As described in this background paper, a large

quantity of public information about osteoporosis

has been and is being produced by the mass media

and commercial publishers, the National Osteoporosis Foundation and other voluntary associations, individual health care organizations, dairy

industry organizations, pharmaceutical companies, and federal and state government agencies.

Despite the existence of this information, many

people are not well informed about the disease.
40 I Public Information About Osteoporosis: What’s Available, What’s Needed?

Although some new and updated public information materials would be helpful, OTA does not believe that the problem of lack of public knowledge

about osteoporosis will be solved by the generation of more pamphlets or videotapes.

Better ways of disseminating public information materials and programs are needed. The establishment of a national resource center on

osteoporosis and related bone disorders will undoubtedly improve the dissemination of these materials and programs. The resource center can

collect and catalogue the existing public information materials and programs, identify materials

and programs that are needed but not available,

create the needed materials and programs, and respond to requests for information. Since health

care professionals as well as lay persons will use

the resource center, it should collect and disseminate reports and articles from the medical and

scientific literature, as well as the kinds of public

information materials discussed in this background paper.

The existence of an entity with primary responsibility for public information about osteoporosis

should help to reduce some of the duplication of

effort that current] y occurs because public and pri -

vate agencies and groups are not aware of the

educational materials that already exist. Once one

organization is designated as the national resource

center. other agencies and groups will be able to

contact that organization to determine whether the

materials they need already exist, and, if the materials do exist, they can spend their time and resources on dissemination and other functions

rather than on the development of new materials.

At present. the National Osteoporosis Foundation is functioning as a de facto national information clearinghouse for osteoporosis. The

foundation considers itself a national osteoporosis

resource center, and many other agencies and

groups that provide public information about osteoporosis refer people to the National Osteoporosis Foundation for information they cannot

provide. Although the foundation is a relatively

small organization, it is currently responding to a

large volume of calls and letters.

Several federal agencies also respond to requests for information about osteoporosis. These

agencies receive many fewer requests than the National Osteoporosis Foundation for such information. The federal agencies also do less than the

National Osteoporosis Foundation to identify

themselves as sources of osteoporosis information. As a result, people who want information

about osteoporosis may not know that the information is available from these agencies.

Given the National Osteoporosis Foundation’s

current functioning as a resource center on osteoporosis, an obvious choice would be to designate

the foundation as the federally mandated national

resource center. It is also possible that the selection process now underway at the National Institutes of Health will produce a credible alternative

to the foundation.

Most, if not all, federally mandated information clearinghouses have an advisory board to

oversee their operation and advise them about the

content of their educational materials and programs. The resource center on osteoporosis and

other bone diseases should have such a board. The

board should include representatives of the different population groups affected by osteoporosis

and other bone diseases and individuals with different points of view about methods of prevention

and treatment for these diseases.

In addition to better ways of disseminating existing public information, some new educational

materials and programs are needed. As noted earlier, most existing public information about osteoporosis focuses on prevention of bone loss and is

targeted to middle-aged and older, white women.

This background paper has described some

impressive educational materials and programs

for children and teenagers, most of which have

been produced and/or paid for by dairy industry

organizations. In contrast, OTA has found very

little public information about osteoporosis for

men and ethnic minority persons. Although men

and some ethnic minority persons are less likely

than white women to have osteoporosis, no one is

immune, and educational materials and programs

designed for these persons should be available.
Public Information About Osteoporosis: What’s Available, What’s Needed? 141

Given the increasing attention to women’s health

issues and the inclusion of osteoporosis as a

women’s health issue, the availability of educational materials and programs about osteoporosis

in men is particularly important. More educational materials and programs are also needed for

people who already have osteoporosis, particularly older people who are most likely to have the disease and to need information about how to avoid

falls and fractures and how to cope with the disability and pain often associated with it.

Public education materials and programs that

are designed for certain types of people are only

helpful if they get to those people. The perception

that the existing public information about osteoporosis is confusing may in part reflect the fact

that some people are exposed to educational materials and programs designed for other types of

people whose situations and information needs

are different. The resource center can help to solve

this problem because individuals who contact the

resource center will be able to describe their particular situations and receive materials appropriate for their needs.

Ideally. public information about osteoporosis

would convey a simple, accurate message about

what different types of people can do to prevent

and treat the disease. Such a message cannot be

developed at present because of the current uncertainty about the efficacy of many of the proposed

methods of prevention and treatment. Now and in

the near future, most simple messages about the

prevention and treatment of osteoporosis are likely to be incorrect, and conversely the correct message is likely to be complex.

OTA believes that the public would benefit

from educational materials and programs that

convey more of this sense of uncertainty than is

conveyed by the materials and programs OTA has

seen. People need to understand that simple, definitive answers about many aspects of the prevention and treatment of osteoporosis are not yet

available, and that ongoing research is likely to result in findings that contradict some current ideas

about the efficacy of various methods of prevention and treatment.

Many of the educational materials and programs described in this background paper list investigational medications as possible methods of

prevention and treatment for osteoporosis without

pointing out that these medications have not been

approved for osteoporosis by the FDA. Other materials and programs point out that the medications have not been approved for osteoporosis but

give the misleading impression that the medications are in the pipeline for FDA approval and that

it is only a matter of time before they will be approved. This has not been the case thus far for either etidronate or sodium fluoride. Both of these

medications are available on the market because

they are approved for other indications, and many

individuals have taken and continue to take them.

Some and perhaps many of these individuals

probably are not aware of the FDA approval status

of the medications, or more particularly. the reasons for the FDA’s decisions thus far not to approve the medications. OTA believes that public

education materials and programs that discuss investigational medications should inform people

about the approval status of the medications and

the reasons for FDA decisions, if any, not to approve the medications. Certainly educational materials and programs produced or disseminated by

a publicly funded resource center should includc

this information.

Most of the educational materials and programs described in this background paper focus

on] y on what works, or is believed to work, to prevent or treat osteoporosis. For people who are interested in prevention and treatment, information

about what does not work is just as important as

information about what does work, and they

should have access to both types of information.

OTA has seen some articles in consumer magazines that describe as effective substances for

which there is no scientific evidence of efficacy.

More importantly, however, most of the public information materials discussed in this background

paper imply or state explicitly that interventions,

such as increased calcium intake and exercise.

prevent osteoporosis. Although there are some

people for whom this message may be correct,
42 I Public Information About Osteoporosis: What’s Available, What’s Needed?

there are other people for whom it is almost certainly incorrect. The latter may benefit in many

other ways from increased calcium intake and

exercise but are unlikely to be full y protected from

osteoporosis. OTA believes that public education

materials and programs should inform people

about what is not likely to work as well as what is

likely to work for different subgroups of the

population.

Lastly, it is important to keep in mind that public information is only one way people learn about

osteoporosis, and improved public information is

on] y one component of an effective system to prevent and treat the disease. Aside from the various

sources of public information discussed in this

background paper, the most likely other source of

information about osteoporosis is physicians and

other health care professionals. Some people first

learn about osteoporosis from their physician or

another health care professional. Others learn

about osteoporosis from another source and then

go to their physician or another health care professional for further information and help in devising

a plan to prevent or treat the disease. Many health

care professionals are not knowledgeable about

osteoporosis, and improved professional education and training is another important component

of an effective system to prevent and treat the

disease.
Appendix A:

Coverage of

Osteoporosis in

Consumer

Magazines A

]43
44 I Public Information About Osteoporosis: What’s Available, What’s Needed?

For this background paper on public information about osteoporosis, the Office of Technology

Assessment (OTA) contracted with Consumer

Choice Unlimited, Inc., for a survey to determine

what was being said about osteoporosis in consumer magazines and to whom the information

was targeted. Consumer Choice Unlimited reviewed the contents of 62 consumer magazines

from April 1990 through March 1991. Table A-1

lists the 26 magazines that included no osteoporosis-related articles in the one-year period of the

study. The remaining 36 magazines included a total of 97 osteoporosis-related articles; table A-2

lists these magazines with the month and title of

each relevant article and the category and subcategory of the article’s content. As noted earlier, Consumer Choice Unlimited used broad criteria for

identifying osteoporosis-related articles, and a

few articles about vitamin D, exercises, and calcium are included even though they did not specifically mention osteoporosis.

The full report of the survey, ‘*Review and

Analysis of Consumer Magazine Articles Related

to Osteoporosis,“ is available from the National

Technical Information Service, U.S. Department

of Commerce, 5285 Port Royal Road, Springfield, VA 22161; telephone (703) 487-4650; rush

orders 1 (800) 553-NTIS; publication no. PB 94-

188042.

Baby Talk

Canadian Consumer

Child

Eating Well

Ebony

Essence

First for Women

Food & Wine

Go/den Years

Mature Outlook

Men's Fitness

Mirabella

Modern Maturity

Nutrition Action

Parenting

Parents

Sassy

Savvy

Seventeen

Southern Living

The A/antic

USDA Food News

Woman

Women’s Sports/Fitness

Working Woman

YM

Child

Consumer

Child

Health

Of color, general

Of color, women

General

Gourmet

Senior

Senior

Men

Over 40

Senior

Consumer

Child

Child

Teen

Teen

Teen

General

Literary

Government

General

Health

General

Teen

———————

SOURCE Consumer Choices Unllmited, Inc “Review and Analysts of

Consumer Magazne Articles Related to Osteoporosis, ” contract report

prepared for the Off Ice of Technology Assessment, U S Congress

March 1991
Magazine Month Title —— . .

American Health

American Health

American Health

Beauty

Better Homes & Gardens

Better Homes & Gardens

Black Elegance

Chatelaine

Chatelaine

Consumer Reports

Cooking Light

Cooking Light

Cosmopolitan

Cosmopolitan

Family Circle

FDA Consumer

FDA Consumer

Gentlemens Quarter/y

G/amour

Good Housekeeping

Good Housekeeping

Good Housekeeping

November

October

March

April

June

July

March

November

September

November

March/April

January

November

September

March

November

October

March

June

September

February

October

● The Lead-Calcium Time Bomb

● Bone Experts Make Headlines

*Which Supplements Should You Take?

Soda Addiction and Bone Fractures

Soda Pop and Exercise

*For Safer Hips (Avoid Long-Half-Life)

*Give Young Teeth a Good Start

*Benefits and Risks of Hormone Therapy

*How To Fight Osteoporosis

*Process American Slices (chart omits calcium)

Variety Milks

*Top 12 for Calcium

*Changing Nutrition Needs of Women

Low-Fat Yogurt Low-Cal Calcium

Brittle Bones

*Estrogens

Vitamin D Fact Sheet

Bone Up

Chocolate Milk for Lactose Intolerance

The Truth About Spinach

*Calcium A Key to Preventing Osteoporosis

*Cram for Calcium

Major category

Other diseases

Prevention—drug

Sources

Absorption

Absorption

Prevention

Sources

Estrogen

Treatment—drug

Sources

Sources

Sources

Prevent Ion

Sources

Other diseases

Estrogen

Vitamin D

Men

Other diseases

Absorption

Overview

Peak bone mass

Subcategory

Lead toxicity

Sodium fluoride calcium etidronate

Supplements

Phosphates in soda

Phosphates in soda

Tranquilizers

Dietary

Competing risks

Sodium fluoride

Dairy

Dairy

Dietary—food chart

Multiapproach

Dairy

Amenorrhea

Benefit/risk

Omits osteoporosis

Australia research

Lactose Intolerance

Oxalate

General/broad

College

(continued)

o

0

C/3

g

-u

o

s

Cn- .

u)
Magazine

Harper’s Bazaar

Health

In Health

In Health

In Health

In Health

In Health

Ladies Home Journal

Ladies Home Journal

Ladies Home Journal

Lear's

Lear’s

Lear’s

Longevity

Longevity

Longevity

Longevity

Longevity

Longevity

Longevity

Longevity

Longevity

Longevity

Longevity

Longevity

Longevity

Month

January

July/August

May/June

January/February

September/October

March/April

May/June

October

November

March

September

March

February

February

April

July

August

July

October

November

July

July

December

May

1, ,1, # tiuly

January

Title

*Bone Up on Diet

Kale for Calcium

Tracking Women’s Bone Loss

*The Calcium Advantage

Ballerina Bones

*A Jolt for Bone Loss (electric)

Antacids for Calcium?

*HGH: Drug for the Decade?

● The Take-Charge Patient

● The Calcium Bank Account

Calcium Supplements for Urinary

Tract Infections

Early Bone Loss

Old Drug/New Tricks

Virtue That Could Backfire

The Strong-Bone Test

*Bone of Contention (letter to the editor)

(Congressional) BiIIs to Prevent Osteoporosis

The New Age-disease link

*Human Growth-Hormone Reduces Body Fat

The Calcium Connection

Cooling Hot Flashes

How a 50 y.o. Female Bone Doctor Builds Bone

Never Too Late To Take Calcium

Nasal Spray To Prevent Osteoporosis

A Drug , To Prevent Fractured Backs

‘Recharging Bones

Major category

Menopause

Absorption

Exercise

Menopause

Risks

Treatment

Sources

Other diseases

Estrogen

Sources

Other diseases

Estrogen

Treatment-drug

Absorption

Diagnosis

Diagnosis

Legislation

Other diseases

Other diseases

Other diseases

Estrogen

Menopause

Menopause

Prevent Ion-drug

Prevention--drug

Treatment
Magazine

Longevity

Longevity

Longevity

Mademoiselle

Mature Health

Mature Health

McCall's

McCall's

Men's Health

Moxie

New Woman

New Woman

New Woman

New Woman

New Woman

New Woman

Prevention

Prevention

Prevention

Prevention

Prevention

Prevention

Prevention

Prevention

Prevention

Month

..——

June

March

October

June

April

April

November

February

January

September

October

October

March

March

March

March

December

July

December

January

October

August

February

March

July

Title

Vitamin D Cocktail

Rub-on Bone Builder

Skim Milk’s Cholesterol

Bone-Breaking Exercise

● Exercise To Prevent Osteoporosis

‘Healing Bone with Electricity

‘Exercise Builds Strong Bones

*New Drug Reverses Bone Loss

The Leg Bone’s Connected to the Knee Bone

Beefing Up Brittle Bones

Major category

Vitamin D

Treatment—drug

Sources

Exercise

Exercise

Treatment

Exercise

Treatment—drug

Treatment

Treatment< rug

Triple Benefits of Exercising (omits osteoporosis) Exercise

Schroeder (D-COl), NIH, & Women’s Health Legislation

Preventing Osteoporosis Prevent Ion

Advertorial Back to Basics Prevent Ion

Yogurt The Healthier Choice Sources

Advertisement with Q/A Sources

*Calcium Update Absorption

Popeye Was Wrong Absorption

*Muscle Up Your Health Exercise

Support Your Skeleton Men

Does CalcIum Prevent Cancer? (No) Other diseases

*Kids May Bank Bone Peak bone mass

Saving Older Bones Menopause

*Diet Keeps You Younger Longer Prevent Ion

Calcium Fortified Foods (Orange Juice) Sources

0
Title Subcategory

Multibenefits

Multiapproach

Magazine Month

Winter

Fall

Major category

Priorities

Priorities

● Exercise and Osteoporosis

How To Reduce Osteoporosis Risk

Exercise

Prevention

Redbook June ‘Osteoporosis Prevention Peak Bone Mass

Runner's World

Runner’s World

Runner's World

June

August

June

Pop’s The Question

Periodic Concern

Calcium Conundrum

Absorption

Exercise

Men

Phosphates in soda

Excess

Portland research

Sat. Even. Post

Sat. Even. Post

● Yogurt Not Just A Snack

● Boning Up

Sources

Sources

Dairy

Dietary

January

March

Self

Self

Self

Self

May

October

February

February

Osteoporosis and Hibernation (bears)

Artery Clogging Menu at NIH

Where Health-Research Dollars Go

● How Much Calcium Do You Really Need?

Exercise

Legislation

Legislation

Sources

Research

Congress

Women’s issue

Quantity

Shape

Shape

Shape

September

March

October

Exercise, Amenorrhea & Bone Mass

Osteoporosis Update

Having Your Calcium and Iron, Too

Exercise

Overview

Sources

Excess

Risk factors

Dietary

Upscale November *Walking Your Way to Fitness (omits osteoporosis) Exercise Moderate

Vogue February Catching Up on Calcium Sources Diet, supplements

Woman’s Day

Womans Day

Woman’s Day

Woman’s Day

Woman’s Day

April

February

February

September

September

*Back Problems

Calcium for PMS

Looks Affect Your Health

*4-Page Vitamin-Mmeral Pullout

Calcium Bonus

Other diseases

Other diseases

Prevention

Sources

Sources

Back aches

PMS

Multiapproach

Calcium multibeneflt

Calcium multibenefit

Working Mother February Chocolate Milk Calcium Is What Counts Sources Dairy--calories

* = Ar!l~l~~ l~nrg~~ !h~n ~r!e page

SOURCE Consumer Choices Unllmlfed Inc “Review and Analysis of Consumer Magazrw Articles Related to Osteoporosis “ contract report prepared for the Off Ice of Technology Assessment

U S Congress, March 1991
References

1. Advisory Group on Application and Dissemination of New Research Developments:

NIH Workshop on Menopause, FinaZReporf

(Bethesda, MD: U.S. Department of Health

and Human Services, Public Health Service,

National Institutes of Health, 1993).

2. Alliance for Aging Research, “Capitol Hill

Forum Details Ageism in American Health

Care,” Nevts from the Alliance for Aging Research, Washington, DC, May 4, 1994.

3. Aloia, J. F., Vaswani, A., and Yeh, J. K., “Calcium Supplementation with and without

Hormone Replacement Therapy To Prevent

Postmenopausal Bone Loss,” Annals of Internal Medicine 120(2):97- 103, 1994.

4. Atkins, A., “The Take-Charge Patient,” Ladies Home Journal, pp. 163, 164, 166, 168,

172, 174, November 1990.

5. Bishop, J. E., “Reporting Negative Studies

in the Mass Media,” Journal of the American Medical Association 267(7):930-93 1,

1992.

6. Bobbin, J., Coordinator of Continuing

Education, National Association of the

American College of Obstetricians and Gynecologists: Organization for Obstetric, Gy -

necologic, and Neonatal Nurses, personal

communication, Nov. 19, 1991.

7. Bone, H. G., Senior Staff Physician, Bone

and Mineral Division, Henry Ford Hospital,

Detroit, MI, remarks at the Endocrinologic

and Metabolic Drugs Advisory Committee

meeting, Rockville, MD, Mar. 8, 1991.

8. Broering, N., Saint Joseph’s Care Group,

Inc., South Bend, IN, personal communication, June 1990.

9. Chalmers, I., “Underreporting Research is

Scientific Misconduct,” Journal of the

American Medical Association 263; 1405-

1408, 1990.

10. Chausmer, A. B., Medical Director, Metabolism and Bone Health, P. A., St, Petersburg,

FL, personal communication, Sept. 14,

1990.

11. Chesnut, C. H., Professor of Medicine and

Radiology, University of Washington Medical Center, Seattle, WA, personal communication, Apr. 10, 1992.

12. Chesnut, C. H., Professor of Medicine and

Radiology, University of Washington Medical Center, Seattle, WA, remarks to the

Clinical Workshop on “The Use of Bisphosphonates in Preventing and Treating Osteoporosis,” Third International Symposium on

Osteoporosis, Washington, DC, Mar. 5,

1994.

13. Colorado Department of Health, “Osteoporosis Prevention Proposal: Supplement to

Disability Prevention Application,” Denver,

CO, July 30, 1991.

14. Commonwealth Fund, Surt’ey of Women’s

Health (New York, NY: July 14, 1993).

15. Consumer Choices Unlimited, Inc., “Review and Analysis of Consumer Magazine

Articles Related to Osteoporosis,” contract

report prepared for the Office of Technology

I 49
50 I Public Information About Osteoporosis: What’s Available, What’s Needed?

16.

17.

18.

19.

20.

21.

22.

23.

24.

25.

26.

Assessment, U.S. Congress, Washington,

DC, March 1991.

Consumer Reports, “Miracle Drugs or Media Drugs?” Consumer Reports 57(3): 144-

146, 1992.

Dairy Council of Greater Metropolitan

Washington, Inc., “Nutrition Education

Workshop Menu,” Washington, DC, March

1990.

Dasmahapatra, A., Associate Professor of

Clinical Medicine, University Hospital,

Newark, NJ, personal communication,

June 1990.

Dawson-Hughes, B., Dallal, G. E., Krall,

E. A., et al., “A Controlled Trial of the Effect

of Calcium Supplementation on Bone Density in Postmenopausal Women,” New England Journal of Medicine 323(1 3):878-883,

1990.

Delacote, G., “Communicating Science to

the Public,” Science and Scientists: Public

Perception and Attitudes (New York, NY:

John Wiley and Sons, 1987).

Dickersin, K., Min, Y., and Meinert, C.L.,

“Factors Influencing Publication of Research Results,” Journal of the American

Medical Association 267(3):374-378. 1992.

Fallcreek, S., Former Executive Director,

New Mexico State Agency on Aging, Santa

Fe, NM, personal communication, Feb. 22,

1991.

Farley, D., “Starting This Month, Look for

‘Legit Health Claims on Foods,” FDA Consumer 27(4): 15-21, 1993.

Fleisch, H., “Disphosphonates: History and

Mechanisms of Action,” Metabolic Bone

Disease and Related Research 3:279-287,

1981.

Fleishman-Hillard, Inc., “American Osteoporosis Alliance: 1990 Public Relations

Program: Executive Summary: Results to

Date: November 15, 1989 - August 15,

1990,” New York, NY, Aug. 17, 1990.

Freedman, F., Director, Health Promotion

Services, New York City Department for the

27.

28.

29.

30.

31.

32.

33.

34.

35.

Aging, New York, NY, personal communication, Jan. 22, 1991.

Galsworthy, T. D., ‘*The Mechanism of an

Osteoporosis Center,” Orthopedic Clinics of

North America 21(1):163-169, 1990.

Galsworthy, T. D., Coordinator, Osteoporosis Center, Hospital for Special Surgery,

New York, NY, personal communication,

Mar. 14, 1991.

Greene, R. R., Program Manager, Gerontology Program, Division of Epidemiology and

Disease Control, New Jersey Department of

Health, Trenton, NJ, personal communications, May 19, 1993, and Mar. 28, 1994.

Grosstete, G., Social Services Manager, Office of Senior Affairs, City of Albuquerque,

Albuquerque, NM, personal communication, Jan. 25, 1991.

Guilford, C., Director, Consumer Affairs

and Information Staff, Food and Drug Administration, Public Health Service, U.S.

Department of Health and Human Services,

Rockville, MD, personal communication,

Jan. 25, 1991.

Hall, M., Mease Health Care, Dunedin, FL,

personal communication, June 1990.

Harris, S. T., Associate Clinical Professor of

Medicine and Radiology, University of

California, San Francisco, CA, remarks to

the Clinical Workshop on “The Use of Bisphosphonates in Preventing and Treating

Osteoporosis,” Third International Symposium on Osteoporosis, Washington, DC,

Mar. 5, 1994.

Harris, S.T., Watts, N. B., Jackson, R. D., et

al., “Four-Year Study of Intermittent C~yclic

Etidronate Treatment of Postmenopausal

Osteoporosis: Three Years of Blinded Therapy Followed by One Year of Open TheraPY9° American Journal of Medicine

95:557-567, 1993.

Harvard Health Letter, “A Special Report:

Osteoporosis,” Harvard Medical School,

Boston, MA, June 1991.
References 151

36. Harwood, K., Staff Intern, National

Women’s Health Network, Washington,

DC, personal communication, June 19,

1990.

37. Heaney, R. P., and Saville, P. D,, b’Etidronate

Disodiurn in Postmenopausal Osteoporosis,” Clinical Pharmacology and Therapeutics 20(5):593-604, 1976.

38. Hertel, D., Senior Product Manager, WyethAyerst Laboratories, Philadelphia, PA, personal communications, Oct. 24, 1991, and

Nov. 19, 1991.

39. Howe, J., National Program Leader for Food

and Nutrition, National Dairy Promotion

and Research Board, Arlington, VA, personal communication, August 1991.

40. Jaffee, L., Program Coordinator. Melpomene Institute, St. Paul, MN, personal communication, June 11, 1990.

41. Joiner, B., The Osteopathic Medical Center

of Texas, Fort Worth, TX, personal communication, June 7, 1990.

42. Jones. A. S., “Study Finds Americans Want

News but Aren’t Well Informed,” Ne}i’ Ybrk

Times, p. 13 (coI. 1), July 15, 1990.

43. Kanis, J. A., and Passmore, R., ‘-Calciunl

Supplementation of the Diet—1 ,“ Bri/ish

,V~~Lii~[ilJ{jl~l-11[11 298(6668): 137- I 40, 1989.

44. Ktiplan, B., Associate Executive Director.

National Osteoporosis Foundation, Washington, DC, personal communications,

Dec. 10, 1990, and July 23, 1991.

45. Kessler. D. A., and Pines, W. L.. “The Federal Regulation of Prescription Drug Advertising and Promotion,” JolIrnal of the

Americun Medical Association 264( 18):

2409-2415, 1990.

46. Kilpatrick, J., MidMichigan Regional Medical Center, Midland, MI, personal communication, July 1990.

47. Kirschstein. R. L., “Research on Women’s

Health,” American Journal of P[[hlic Health

81 (3):291 -293, 1991.

48. Kleerekoper, M., Peterson, E. L., Nelson,

D. A., et al., “A Randomized Trial of Sodium

Fluoride as a Treatment for Postmenopausal]

Osteoporosis,” Osteoporosis International

1 : 155-161, 1991.

49. Klotz, C., Director, Senior Services, Sutter

Health, Sacramento, CA, personal communication, September 1990.

50. Koren, G., and Klein, N., “Bias Against

Negative Studies in Newspaper Reports of

Medical Research, ’’Journal of the American

Medical Association 266(13): 1824-1826,

1991.

51. Leary, W. E., “Study Finds Promise in Regimen for Treatment of Bone Disease,” Ne\t’

York Times. pp. A13, A17, Apr. 15, 1994.

52. Lederle Consumer Health Products, “Your

Bones Are Too Important To Settle for

Less.” advertisement, Good Housekeeping,

p. 125, February 1991.

53. Lindsay, R., “Fluoride and Bone—Quantity

Versus Quality.” Ne\~* England Journal of

Medicine 322( 12):845-846, 1990.

54. Looker, A., Chief, Nutrition Statistics

Branch, National Center for Health Statistics, Hyattsville, MD, personal communication, Nov. 16, 1993.

55. Looker, A., Chief, Nutrition Statistics

Branch, National Center for Health Statistics, Hyattsville, MD. remarks to the Third

International Symposium on Osteoporosis:

Research Advances and Clinical Applications, Washington, DC, Mar. 3, 1994.

56. Love, B., Program Manager and Director.

Osteoporosis Prevention Program. Center

for Metabolic Bone Disorders, Providence

Medical Center, Portland, OR, personal

communications, April 1990.

57. Lowell, D., Dimensions, Center for

Women Health—University Medical Center, Lubbock, TX, personal communication,

Sept. 19, 1990.

58. Lowery S., and DeFleur, M. L.. Milestones

in Mass Cor?lrrll!nic’[iti{~~l Research.. Mt)dia

Eflects (2nd Ed.) (White Plains, NY: Longman. Inc., 1988).

59. Luhrs, J., Director, McLeod Women’s Hospital Resource Center, Florence, SC, personal communication, June 1990.
52 I Public Information About Osteoporosis: What’s Available, What’s Needed?

60. MacMahon, A., Director, Center for

Women’s Medicine at Florida Hospital, Orlando, FL, personal communication, July

1990.

61. Maloney, S., ‘*Healthy Older People,” Surgeon General’s Workshop: Health Promotion and Aging (Washington, DC: Public

Health Service, U.S. Department of’ Health

and Human Services, 1988).

62. Marcus, R., ● *Cyclic Etidronate: Has the

Rose Lost Its Bloom?” American Journal of

Medicine 95:555-556, 1993.

63. Marion Merrell Dow, Inc., ● ’Osteoporosis: Is

[t In Your Future?” advertisement, Good

Housekeeping, p. 118, February 1991.

64. Marion Merrell Dow, Inc. (Cincinnati, OH),

Calcium Communique 4(1 ), April 1991.

65. Mason, J. O., ● ’From the Assistant Secretary

for Health, U.S. Public Health Service: A

National Agenda for Women’s Health,”

Journal of the American Medical Association 267(4):482, 1992.

66. May field, J., Executive Director, National

Rural Health Network, Washington, DC,

personal communication, Apr. 11, 1990.

67. Mayo Clinic Health Letter ‘

b Medical Essay:

Osteoporosis-The Silent Epidemic in

Women,” Mayo Foundation, Rochester,

MN, 1984.

68. McDaniel, J., Director, Marketing and Communications, Hughston Sports Medicine

Hospital, Columbus, GA, personal communications, Aug. 30, 1990, and Feb. 11, 1991.

69. McGowan, J., Director, Bone Biology and

Bone Diseases Branch, National Institute of

Arthritis and Musculoskeletal and Skin Diseases, National Institutes of Health, Bethesda, MD, personal communication, Apr. 29,

1994.

70. McLerran, R., Humana Women’s Hospital,

South Texas, San Antonio, TX, personal

communication, June 29, 1990.

71. McNutt, K., “

b

Partnerships with the Media:

Understanding the Communications Industry,” Nutrition Today, pp. 35-38, May/June

1990.

72. Meade, H., Public Health Consultant, New

Jersey Department of Health, Gerontology

Program, Trenton, NJ, personal communication, Oct. 10, 1991.

73. Miller, G. D., Vice President, Nutrition Research/Technical Services, National Dairy

Council, personal communication, Aug. 4,

1992.

74. Mockenhaupt, R., Director, National

Resource Center on Health Promotion and

Aging, Washington, DC, personal communication, July 2, 1990.

75. Morgan, V., Writer/Editor, Information Office, National Institute on Aging, National

Institutes of Health, Public Health Service,

U.S. Department of Health and Human Services, Bethesda, MD, personal communication, Jan. 14, 1991.

76. National Dairy Council, “Focus on Nutrition and Women’s Health,” Dairy Council

Digest 64(4), July/August 1993.

77. National Dairy Council, 1992 Nutrition

Education Materials (Rosemont, IL: 1992).

78. National Dairy Promotion and Research

Board, Calcium for the Prime of L~k (Arlington, VA: 1988).

79. National Dairy Promotion and Research

Board, Annual Report (Arlington, V A :

1 990).

80. National Dairy Promotion and Research

Board, “Advertising and Promotion Programs,” Arlington, VA, 1991.

81. National Osteoporosis Foundation, “Boning

Up on Osteoporosis,” Washington, DC,

1989.

82. National Osteoporosis Foundation, “Boning

Up on Osteoporosis,” Washington, DC,

1991.

83. National Osteoporosis Foundation, “[Understanding Osteoporosis: A Survey of American Women,” Gallup Survey, Washington,

DC, 1991.

84. National Women’s Health Network, “Major

Drug Manufacturer Funds Osteoporosis

Public Education Campaign,” The Net}\ork

News, pp. 1,3,8, May/June 1985.
References 153

85. National Wornen’s Health Resource Center,

symposium materials, Public Policy Symposium on ‘-

Forging a Women’s Health Research Agenda,*’ Washington, DC, Feb. 28,

1991.

86. Neus, E., ‘-Reporting Negative Studies in the

Mass Media” (letter to the editor), ~our-rzalof

the American Medical Association

267(7):930, 1992.

87. Newsweek, “New Hope for Old Bones,”

Ne~t’s\teek, May 14, 1990, p. 55.

88. Nightingale, S. L., “From the Food and Drug

Administration: Public Education Campaign About the New Food Label,” Journal

of the American Medical Association

271 (19): 1472, 1994.

89. Norman-Mazella, N., Union Hospital of

Cecil County Women’s Center, Elkton, MD,

personal communication, June 1990.

90. Ott, S., Associate Professor, Department of

Medicine, University of Washington Medical Center, Seattle, WA, Draft Letter to the

Editor of the New England Journal of Medicine, Sept. 21, 1990.

91. Oyer. J., Kennedy Memorial Hospitals, University Medical Center, Stratford Division,

Stratford, NJ, personal communication,

June 1990.

92. Pak, C. Y. C., Sakhaee, K., Piziak, V., et al.,

“Slow-Release Sodium Fluoride in the Management of Postmenopausal Osteoporosis:

A Randomized Controlled Trial,” Annals CIf

Internal Medicine 120(8):625-632, 1994.

93. Potomac Television/Cornrnunications, Inc.,

“Executive Summary for ‘Bone Wise’ Public Service Announcement,” Washington,

DC, no date.

94. Raisz, L. G., Head, Endocrinology and Mettibolisrn, University of Connecticut Health

Center, Farmington, CT, remarks to the

Clinical Workshop on “The Use of Bisphosphonates in Preventing and Treating Osteoporosis,” Third International Symposium on

Osteoporosis, Washington, DC, Mar. 5.

1994.

95. Raymond, S. C., Executive Director, National Osteoporosis Foundation, Washington,

DC, letters to the Office of Technology Assessment, July 31, 1992, and Aug. 25, 1992.

96. Raymond, S. C., Executive Director, National Osteoporosis Foundation, Washington,

DC, personal communication, May 13,

1994.

97. Reeves, B., and Hawkins. R., E@cts f~f

Mass Communication (Chicago, IL: Science

Research Associates, Inc., 1986).

98. Reid, I. R., Ames, R. W., Evans, M. C., et al.,

‘*Effect of Calcium Supplementation on

Bone Loss in Postmenopausal Women,”

New England Journal of Medicin e

328(7):460-464, 1993.

99. Rennie, D., and Flanagin, A., ‘“Publication

Bias: The Triumph of Hope Over Experience,” Journal of the American Mc{iical

Association 267(3):41 1-412.1992.

100. Riggs, B. L., Hodgson, S. F., O’Fallen,

W. M., et al., ‘b

Effect of Fluoride Treatment

on the Fracture Rate in Postmenopausal

Women with Osteoporosis,”’ Ne}i’ England

Journal of Medicine 322( 12):802-809,

1990.

101. Robbins, L., Director of Community Education, Hospital for Special Surgery, New

York, NY, personal communication.

Mar. 14, 1991.

102, Robinson, D., Krames Communication, San

Bruno, CA, personal commun i cat ion,

Feb. 11, 1991.

103. Roland, R., Assistant Producer, MedStar

Communications, Allentown, PA. personal

communication, Feb. 21, 1991.

104. Seeley, D. G., Browner, W. S., Nevitt, M, C..

et al., “Which Fractures Are Osteoporotic’?”

Annals of Internal Medicine 115:837-842,

1991.

105. Seiss, S., Administrative Assistant, Mineral

Metabolism, Jerry Pet(is Veterans Hospital.

Loma Linda, CA, personal communication.

February 1991.
54 I Public Information About Osteoporosis: What’s Available, What’s Needed?

106.

107.

108.

109.

110.

111.

112.

113.

114.

115.

116.

Sheets, D., St. Petersburg Woman’s Clinic,

P. A., St. Petersburg. FL, personal communication, September 1990.

Singer, E., Director, Information Office, Office of Health Research Reports, National

Institute of Diabetes and Digestive and

Kidney Diseases, National Institutes of

Health, Public Health Service, U.S. Department of Health and Human Services, Bethesda, MD, personal communication,

Jan. 10.1991.

SmithKline Beecham, Advertisement for

Turns, People, p. 63, Mar. 22, 1993.

Steinberg, K., Chief, Enzyme Research Laboratory, Environmental Health, Centers for

Disease Control, Public Health Service,

U.S. Department of Health and Human Services, Atlanta, GA, personal communication, Jan. 10, 1991.

Storm, T., Thamsborg, G., Steiniche, T., et

al., “Effect of Intermittent Cyclical Etidronate Therapy on Bone Mass and Fracture

Rate in Women with Postmenopausal osteoporosis,” New England Jour-nul of Medicine 322( 18): 1265-1271, 1990.

Svendson, M., Women’s Hospital Osteoporosis Center, Baton Rouge, LA, personal

communication, January 1991.

Tetzloff, I., Deputy Director, Division of

Training and Development, Office of’ Program Development, Administration on Aging, U.S. Department of Health and Human

Services, personal communication, Jan. 22,

1991.

Twentieth Century Fund, Science in the

Streets (New York, NY: Priority Press,

1984).

United Dairy Industry Association, UDIA:

1989 Annual Report (Rosernont, IL: 1989).

U.S. Congress, Office of Technology Assessment, Information Center, DIALOG Papers Search, July 1991.

U.S. Department of Agriculture, Cooperative Extension Service, “Bibliography of

Cooperative Extension Service Puhlictitions,” Washington, DC, January 1987.

117.

118.

119.

120.

121.

122.

U.S. Department of Commerce, Bureau of

the Census, Statistical Abstract of the

Uni/ed States: 1990, 1 IOth Ed. (Washington, DC: U.S. Government Printing Office,

1 990).

U.S. Department of Health and Human Services, Public Health Service, Public Health

Reports (Women’s Health: Proceedings of

the National Conference on Women’s

Health, June 17-18, 1986, Bethesda, MD,

sponsored by the Food and Drug Administration and Public Health Coordinating

Committee on Women’s Health Issues),

Special Supplement to the July-August

1987 issue, PHS Pub. No. 86-50193, Washington, DC, July-August 1987.

U.S. Department of Health and Human Services, Pub] ic Health Service, Surgeon General’s Workshop, Health Promotion and

Aging: Proceedings (Washington, DC:

1988).

U.S. Department of Health and Human Services, Public Health Service, Public Health

Reports (Women’s Health: Proceedings of

the National Conference on Women Health

Series—Special Topic Conference on Osteoporosis, Oct. 30, 1987, Bethesda, MD,

sponsored by the Food and Drug Administration and Public Health Coordinating

Committee on Women’s Health Issues),

Special Supplement to the September-October 1989 issue, PHS Pub. No. 89-50193,

Washington, DC, September-October 1989.

U.S. Department of Health and Human Services, Public Health Service, Healthy

People 2000: National Health Promotion

and Disease Prevention Objectives, DHHS

Pub. No. (PHS) 91-50212 (Washington,

DC: U.S. Government Printing OftIce,

1 991).

U.S. Department of Health and Human Services, Public Health Service, National Institutes of Health, National Institute of

Arthritis and Musculoskeletal and Skin Diseases, O.stt~~j/]{jt-[),\.i,s Resewrch, Ed[{c[~tion
References 155

123.

124.

125,

126.

127.

128.

129.

130.

and Health Promotion, NIH Pub. No.

91-3216 (Bethesda, MD: September 1991).

U.S. Department of Health and Human Services, Public Health Service, Alcohol, Drug

Abuse, and Mental Health Administration,

National Institute of Mental Health, Television and Behavior: Ten Years of Scientific

Progress and Implications for the Eighties,

Volume I: Summary Report, DHHS Pub.

No. (ADM) 82-1195 (Bethesda, MD: 1982).

U.S. Department of Health and Human Services, Public Health Service, Food and Drug

Administration, “Food Labeling: Health

Claims; Calcium and Osteoporosis,” Federal Register 58(3):2665-2681, 1993.

U.S. Department of Health and Human Services, Public Health Service, Food and Drug

Administration, Endocrinologic and Metabolic Drugs Advisory Committee meeting,

Rockville, MD, unedited transcript, Mar. 8,

1991.

U.S. Department of Health and Human Services, Public Health Service, Food and Drug

Administration, Endocrinologic and Metabolic Drugs Advisory Committee meeting,

Rockville, MD, unedited transcript, July 24,

1991.

U.S. Department of Health and Human Services, Public Health Service, National Institutes of Health , OffIce of Medical

Applications of Research, Osteoporosis:

Consensus Conference (Bethesda, MD:

1984).

U.S. Department of Health and Human Services, Public Health Service, Office on

Women’s Health, PHS Action Plan for

Women’s Health DHHS Pub. No. (PHS)

91-50214 (Washington, DC: U.S. Government Printing Office, September 199 1).

Wall Street Journal, “Drug May Slow Fractures in Elderly Women’s Bones,” Wall

Street Journal, pp. B4, B5, Apr. 15, 1994.

Watts, N. B., Associate Professor of Medicine, Emory University, Atlanta, GA, remarks to the Cl inical Workshop on ‘*The Use

131.

132.

133.

134.

135.

136.

137.

138.

of Bisphosphonates in Preventing and Treating Osteoporosis,” Third International Symposium on Osteoporosis, Washington, DC,

Mar. 5, 1994.

Watts, N. B., Harris, S. T., Genant, H. K., et

al., “Intermittent Cyclical Etidronate Treatment of Postmenopausal Osteoporosis,”

New England Journal of Medicine 323(2):

73-79, 1990.

White, S., Office of Disease Prevention and

Health Promotion, Public Health Service,

U.S. Department of Health and Human Services, Washington, DC, personal communication, June 7, 1990.

Wilkes, M. S., and Kravitz, R. L., “Medical

Researchers and the Media: Attitudes Toward Public Dissemination of Research,”

Journal of the American Medical Association 286(8):999-1003, 1992.

Williams, C., Resource Suite Coordinator,

Regional Women’s Center, Slidell Memorial Hospital, Slidell, LA, personal communication, July 1990.

Wisconsin Department of Health and Social

Services, Division of Health, The E&ectiveness of a Multi-Media and Interpersonal Osteoporosis Information Campaign: A Three

Community Study (Madison, WI: 1988).

Wortman, J. S., Technical Information Specialist, National Institute of Arthritis and

Musculoskeletal and Skin Diseases, National Institutes of Health, Public Health Service, U.S. Department of Health and Human

Services, Bethesda, MD, personal communications, Oct. 18, 1990, and Jan. 5, 1991.

Wyatt, P., Executive Medical Secretary,

Sacred Heart Hospital and Rehabilitation

Center, Norristown, PA, personal communication, June 1990.

Yankelovich, Skelly, and White, Inc., Famiiy Health in an Era of Stress: The General

Mills American Family Report, 1978-79

(Minneapolis, MN: General Mills, Inc.,

1979).
I ndex

A

AARP. See American Association of Retired

Persons

Administration on Aging

“Bonewise” osteoporosis information kit funding,

19,38

“Healthy Older Persons Campaign” cosponsor,

36

National Osteoporosis Prevention Week funding,

38

National Resource Center on Health Promotion

and Aging, 37-38

public service announcements, 13, 38

“Age Page” fact sheets, 33

Albuquerque Area Agency on Aging televised

health education programs, 38

American Academy of Orthopedic Surgeons

osteoporosis public infomlation activities, 21

American Association of Retired Persons

menopause workshop cosponsorship, 33

National Resource Center on Health Promotion

and Aging, 21, 37-38

osteoporosis pub] ic infomlation activities, 21

American College of Obstetricians and

Gynecologists

osteoporosis pub] ic infomlation activities, 21

American Dairy Association, 26

American Dental Association

“Women’s Health Campaign,” 2 I

American Dietetic Association

osteoporosis public information activities, 21

American Journal of Medicine

etidronatc effectiveness study, 8

American Medical Association

‘*Women’s Health Campaign,”’ 21

American Osteoporosis Alliance

osteoporosis public information activities, 29-30

American Running and Fitness Association, 21

Ann Landers

osteoporosis column, 14, 19

Area agencies on aging. 37, 38

Ayerst Laboratories. Sce also Wyeth Ayerst

Laboratories

educational brochure, 28

estrogen therapy advertising campaign, 20-21,

30-31

osteoporosis public information campaign, 29

B

“Bonewise” osteoporosis infom~ation kit for older

people, 19, 38

“Boning Up on Osteoporosis” public infornlation

booklet, 17, 19,28

c

Calcitonin

FDA approval status, 15,28,36

public information problems, 9

Calcium. See also Calcium Supplements

allowed health claims for calcium intake and

osteoporosis, 35

as osteoporosis-related magazine article topic,

15, 16

“Calcium for the Prime of Your Life” public infom~ation campaign, 26

concerns about promotion through the mass

media, 6

Consensus Development Conference on relationship with osteoporosis, 9

public infom~ation about role in preventing

osteoporosis, 9, 41-42

research findings about relationship with

osteoporosis, 6, 8

Calcium supplements

concerns about promotion through the mass

media, 6

paid advertising, 29, 30

CDC. See Centers for Disease Control and

Prevention

Centers for Disease Control and Prevention

osteoporosis public infornlation activ i(ies, 37

state projects in Colorado and Ncw Jersey, 37, 39

I 57
58 I Public Information About Osteoporosis: What’s Available, What’s Needed?

Child Care Association, Wichita, KS

calcium nutrition booklet for children, 18

Clearinghouses

National Arthritis and Musculoskeletal and Skin

Disease Information Clearinghouse, 32

National Institute on Aging Information Center,

33

National Resource Center on Health Pron~otion

and Aging, 37-38

Colorado

CDC-funded osteoporosis project, 37,39

Columbia Hospital for Women

National Women’s Health Resource Center, 21

Commercial publishers

expert review of material before publication, 16

health and medical news programming and

publications, 16

Commonwealth Fund, Commission on Women’s

Health

Louis Harris and Associates telephone survey, 10

Cooperative Extension System, U.S. Department of

Agriculture

osteoporosis public education activities, 38-39

D

Dairy Council of Greater Metropolitan Washington,

Inc.

workshops for teachers and youth group leaders,

27

Dairy industry organizations

American Dairy Association, 26

National Dairy Council, 26-27

National Dairy Promotion and Research Board,

25-26

United Dairy Industry Association, 26-27

Direct-to-consumer drug advertising debate, 31

The Discovery Channel

health information programming, 13

E

Eden, Dr. Dean

radio health infom~ation program, 13

Educational resource kit from National Osteoporosis

Foundation, 12-13, 17,23

Electricity used to stimulate bone healing

as osteoporosis-related magazine article topic, 15

Endocrinologic and Metabolic Drugs Advisory

Committee of the FDA

calcitonin evaluation, 36

etidronatc evaluation, 7, 35-36

Estrogen therapy

as osteoporosis-related magazine article topic,

15, 16

print advertising campaign, 20-21,30-31

public information problems, 9

Ethnic differences

bone density, 4-5

television viewing, 12

Etidronate

as osteoporosis-related magazine article topic,

15, 16

FDA approval status, 7-8,35-36

media coverage of research findings, 7-8, 14

public information problems, 6,7-8

Exercise

as osteoporosis-related magazine article topic,

15, 16

classes offered by hospitals, 23

public information about role in preventing

osteoporosis, 41-42

F

Federal agencies. See also specific agencies by

name

osteoporosis public information activities, 3

Food and Drug Administration

allowed health claims for calcium intake anc

osteoporosis, 35

calcitonin approval status, 36

conferences, 34-35

-39

Endocrinologic and Metabolic Drugs Advisory

Committee, 7,35-36

etidronate approval status, 7-8, 35

nonprescription medication promotion

regulations, 29

Office of Consumer Affairs, 35

osteoporosis treatment approval, 6-10, 35-36, 41

prescription medication promotion regulations, 6,

28,30

public notification of approval decisions, 1 (),

35-36,41-42

“Women’s Health Initiative,” 34

Food Marketing Institute

“Boning Upon Osteoporosis” booklet, 21-22,32

Future Homemakers of America

“Student Body” educational program, 20

G

Gallup telephone survey, 10

Gender differences. See also Osteoporosis, in men

bone density, 4

newspaper reading, 13

television viewing, 12

Girl Scouts

*’Healthy Bones” badge, 20

New Jersey osteoporosis project, 39
Index 159

H

Hart’at-d Health Letter, 23

Health care organizations

osteoporosis public information activities, 22-24

“Health Matters” television health information

program, 13

“Healthy Older Persons Campaign,” 36-37

Healthy People 2000: National Health Promotion

and Disease Pre\~ention Objectives, 36

HHS. See U.S. Department of Health and Human

Services

Hospital for Special Surgery Osteoporosis Center

public information activities, 23,24-25

I

Information sources

commercial publishers, 16

federal and state agencies, 31-39

mass media, 11-16

private organizations, 16-31

Inland Empire Council of the Girl Scouts of the

U.S.A.

“Healthy Bones” badge, 20

J

Journal of the American Medical Association

survey of accuracy of media coverage of research

findings, 11

L

Lending libraries

hospital-operated, 23

Lifetime Channel

health information programming, 13

“Living with Aging” pamphlet series, 33

Louis Harris and Associates telephone survey, 10

M

Magazines

content analysis of osteoporosis-related articles,

15

lead time for news stories, 14

osteoporosis article length, 15

osteoporosis-related article survey, Appendix A,

3, 14-16

target audiences, 14-15

Marion Merrell Dow, Inc.

Calcium Communique newsletter, 29

Mass media

bias against negative studies, 12

brevity of news reports, 5, 11-12

criticism by scientists and health care

professionals, 11

influence of, 11

number of people reached by, 11

osteoporosis public information activities, 11-16

prescription medication promotion, 5-6

researchers’ bias against submitting negative

studies for publication, ] 2

techniques to attract public attention, 11

types of health reports, 11

Mayo Clinic Health Letter, 23

“Medicine for the Layman” lecture series, 32

Melpomene Institute for Women’s Health Research,

St. Paul, MN

osteoporosis public infom~a(ion activities, 20

Melpomene Journal, 20

Mid Michigan Regional Medical Center, Midland,

MI

osteoporosis and nutrition presentation, 18

“Milk. It Does a Body Good” advertising campaign,

26

Mirkin, Dr. Gabe

radio health infornlation program, 13

N

NAACOG. See Nurses Association of the American

College of Obstetricians and Gynecologists

National Arthritis and Musculoskeletal and Skin

Disease Infommtion Clearinghouse, 32

National Dairy Council

nutrition education materials, 26-27

osteoporosis public infom~ation activities, 26-27

Visiting Professor/Speakers Bureau program, 27

National Dairy Promotion and Research Board

“Dairy Does a Body Good” program funding, 20

osteoporosis public infornlation activities, 25-26

National Health and Nutrition Examination Survey

bone density findings, 4-5

number of women affected by osteoporosis, 1, 3

National Institute of Arthritis and Musculoskeleta]

and Skin Diseases

‘“Boning Upon Osteoporosis” booklet, 21-22, 32

Information Clearinghouse, 32

Office of Scientific and Health Communications,

32

osteoporosis public infomlation activities, 31-32

resource center on osteoporosis establishment,

9-10,40,41

National Institute of Dental Research

osteoporosis public infomlation activities. 34

National Institute of Diabetes and Digesl

Kidney Diseases

osteoporosis public information activ

National Institute on Aging

“Age Page” fact sheets, 33

Infomlation Center, 33

“Living with Aging” pamphlet series.

i}’c and

tics. 33-34

33
60 I Public Information About Osteoporosis: What’s Available, What’s Needed?

osteoporosis public information activities, 32-33

National Institutes of Health. See also specijic institutes by name, e.g., National Institute of Arthritis

and Musculoskeletal and Skin Diseases

Consensus Development Conference on calcium

intake and osteoporosis, 9

Consensus Development Conference on osteoporosis, 33

osteoporosis public information activities, 31-34

resource center on osteoporosis establishment,

9-10,40,41

National Osteoporosis Foundation. See also National Osteoporosis Prevention Week

description, 17

FDA approval disclaimer, 19

Gallup telephone survey, 10

information requests, 3, 4, 18-19

letters illustrating typical questions and concerns,

3,4

location of offices, 17

membership, 17

national resource center function, 18-19, 40

position statements, 30

public service announcements on osteoporosis,

13,38

quarterly newsletter, 19

special population targeted publications, 19

toll-free telephone number, 18-19

type of infomlation available, 19

National Osteoporosis Prevention Week

Administration on Aging funding, 38

educational materials, 18

educational programs, 18

educational resource kit, 12-13, 17, 23

“Partners in Prevention,” 17-18

pharmaceutical company funding, 28

publicity efforts of American Osteoporosis

Alliance, 30

National Resource Center on Health Promotion and

Aging, 21,37-38

National Women’s Health Network

information packet, 21

newsletter osteoporosis-related articles, 20-21

National Women’s Health Report newsletter, 21

National Women’s Health Resource Center, Washjng(on, DC

osteoporosis public information activities, 21

Ne\~’ England Journal of Medicine

etidronate effectiveness studies, 7, 14

survey of accuracy of media coverage of research

findings, 11

New Jersey

CDC-funded osteoporosis project, 37,39

Girl Scout badge on osteoporosis, 39

New York City Department for the Aging “Project

Stay Well” health education program, 38

New York 7imes

coverage of sodium fluoride study, 6

Newspapers

coverage of etidronate studies, 7, 14

number of news reports about osteoporosis, 14

readership statistics, 13

tangibility of information, 14

types of health reports, 13-14

NHANES. See National Health and Nutrition Examination Survey

NIA. See National Institute on Aging

NIAMS. See National Institute of Arthritis and Musculoskeletal and Skin Diseases

NIDDK. See National Institute of Diabetes and

Digestive and Kidney Diseases

NIH. See National Institutes of Health

Norwich Eaton Pharmaceuticals, Inc.

brochure publication, 29

Nurses Association of the American College of Obstetricians and Gynecologists

osteoporosis seminars, 29

Nutrition education programs

for adults, 27

for children, 18,20,26-27

for health care professionals and educators, 27

Nutrition Labeling and Education Act of 1990,35

0

ODPHP. See Office of Disease Prevention and

Health Promotion

Office of Disease Prevention and Health Promotion

“Healthy Older Persons Campaign,” 36-37

National Health Information Center, 36

Office of Research on Women’s Health

osteoporosis-related activities, 34

Office on Women’s Health

osteoporosis-related activities, 37

Older Women’s League

osteoporosis public information activities, 21

Osteoporosis

benefit to pharmaceutical companies of greater

public awareness about, 28

definition, 1

discrepancy between quantity of information and

perceived lack of information, 3-5

fractures most often attributable to, 1

information sources, 3

in men, 10-11, 15, 40-41

number of people affected, 1, 3

public awareness, 3

public knowledge surveys, 10-11
—.

Index 161

rcsourcc center, 9-10

b’Osteoporosis: Stop the Lady-killer” public infom]ation campaign, 39

Osteoporosis Awareness Resource Center, Spokane,

WA

‘bGcncrations of Prevention” tee shirt, 18

Osteoporosis Center News newsletter, 23-24

The Osteoporosis Report newsletter, 19

P

“Partners in Prevention”

Associate, Contributing, Supporting, and Sustaining Partners, 17-18, 22-24

membership, 17

Peck, Dr. William

talk show interview with, 13

Peoples Dmg Stores, Inc.

“’Living with Aging” pamphlet series, 33

Perspective in Health Promotion and Aging

newsletter, 38

Phammceutical companies. See also .Ypecific conzpanies b)’ name

benefit of greater public awareness about

osteoporosis, 28

direct-to-consumer advertising, 31

mass media bias against reporting negative studies and, I 2

National Osteoporosis Prevention Week educational materials funding, 28

osteoporosis public information activities, 27-31

purpose of public information campaigns, 27-28

use of mass media to promote prescription

medications, 5-6, 30

PHS Action Plan for Women’s Health, 37

Prescriptions written at the request of the patient, 5,

11

Private organizations

dairy industry organizations, 24-27

educational activities, 16-17

health care organizations, 22-24

infom~ation distribution methods, 16

National Osteoporosis Foundation, 17-19

pharmaceutical companies, 27-31

types, 16

voluntary associations, 19-22

Procter and Gamble Pharmaceuticals. See Norwich

Eaton Phamlaceuticals, Inc.

“Project Stay Well” health education program, 38

Public Broadcasting Service

osteoporosis videotape, 20

Pliblic Health Reports, 35

Public service announcements

television programming, 11, 12-13, 26, 38

Wisconsin public information campaign, 39

R

Radio

health information programming, 13

listener statistics, 13

Resource center on osteoporosis, 9-10,40,41

Rhone-Poulenc Rorer Pharmaceuticals, Inc.

educational brochures. 28

s

Sandoz Phamlaceutical Corporation

“Boning Upon Osteoporosis” revision funding.

28

Sodium fluoride

media coverage of research findings, 6

public information problems, 6

research findings, 6

Spanish-language materials, 27

States. See also speeific states by name

osteoporosis programs, 31, 37, 39

“Student Body” nutrition program, 20

Sullivan, Dr. Louis

public service announcements on osteoporosis,

13,38

T

The Surgeon General’s Workshop: Health Promotion

and Aging, 36

Television

Albuquerque Area Agency on Aging televised

health education programs, 38

cable television programming, 13

health infom~ation programming, 11, 13

National Dairy Promotion and Research Board ad

campaign, 26

public service announcements, 11, 12-13,26

viewer statistics, 12

Timeless Pioneers, 21

“20/20” news magazine program

osteoporosis segment, 16

u

United Dairy Industry Association, 26,27

University of Connecticut Health Center Osteoporosis Center

“Boning Upon Osteoporosis” public information

booklet, 19,28

newsletter, 23-24

U.S. Department of Agriculture

Cooperative Extension Service, 26

Cooperative Extension System, 38-39

National Dairy Promotion and Research Board,

25-26

U.S. Department of Health and Human Services
62 I Public Information About Osteoporosis: What’s Available, What’s Needed?

agencies involved in osteoporosis public information activities, 31-39

USDA. See U.S. Department of Agriculture

v

Visiting Professor/Speakers Bureau program, 27

w

Wall Street Journal

coverage of sodium fluoride study, 6

Washington Dairy Association

audiovisual catalogue, 20

“Healthy Bones” Girl Scout badge development,

20

Wisconsin

“Osteoporosis: Stop the Lady-killer” public information campaign, 39

Women’s Association of the National Rural Health

Network

educational campaign, 20

“Women’s Health Initiative,” 34

Women’s Midlife Resource Center, 21

Wyeth-Ayerst Laboratories

estrogen therapy print advertising campaign,

30-31

public information materials, 28

Y

“Your Health” cable television program, 13

f7 US. GOVERNMENT PRINTING OFFICE: 1994– 30 1- 804 / 174 ~ 8