Report

to the Secretary

on

HIV/AIDS

in Racial and Ethnic

Communities

submitted by the

National Minority HIV

Working Group

February, 1999
In memory of

In October of 1996 James Abrams participated in the

Native American Institute at the National Skills Building

Conference, which was the beginning of the process that

brought about this Report. He was one of the two

individuals who presented the recommendations from

the Native American Institute at the closing. In July

1997, he was selected to be a member of the National

Minority HIV Working Group, a role he carried out until

the HIV he fought so valiantly prevented him from

carrying out his duties. In early 1998, James passed,

marking the end of one more life due to this epidemic.

Those who knew James will remember his indefatigable

efforts as an advocate for the Native American

community. His contributions to this document were

many.
TABLE OF CONTENTS

HISTORY................................................................................................................................................................. 1

I STATISTICS ..............................................................................................................................1

II BACKGROUND .....................................................................................................................1

III REPORT DEVELOPMENT PROCESS .........................................................................................2

IV ACTION STEPS......................................................................................................................3

V RELATIONSHIP TO OTHER DEPARTMENTAL HIV/AIDS ACTIVITIES .......................................4

Congressional Black Caucus Initiative............................................................................................................... 4

HHS Initiative to Eliminate Racial and Ethnic Disparities in Health .................................................................. 4

CDC People of Color Activities......................................................................................................................... 4

PREAMBLE............................................................................................................................................................. 1

ISSUE AREAS.......................................................................................................................................................... 7

I PREVENTION............................................................................................................................7

Prevention Preamble......................................................................................................................................... 7

Prevention Action Steps..................................................................................................................................... 7

II RESEARCH .........................................................................................................................12

Research Preamble ......................................................................................................................................... 12

Research Action Steps..................................................................................................................................... 12

III SERVICES...........................................................................................................................18

Services Preamble........................................................................................................................................... 18

Services Action Steps....................................................................................................................................... 18

IV POLICY DEVELOPMENT ......................................................................................................24

V PENDING ISSUES ................................................................................................................24

APPENDIX A - RECOMMENDATIONS ............................................................................................................. 25

PREVENTION....................................................................................................................................................... 25

Prevention Recommendation: P1..................................................................................................................... 25

Prevention Recommendation: P2..................................................................................................................... 25

Prevention Recommendation: P3..................................................................................................................... 25

Prevention Recommendation: P4..................................................................................................................... 25

Prevention Recommendation: P5..................................................................................................................... 25

Prevention Recommendation: P6..................................................................................................................... 26

Prevention Recommendation: P7..................................................................................................................... 26

Prevention Recommendation: P8..................................................................................................................... 26

Prevention Recommendation: P9..................................................................................................................... 26

Prevention Recommendation: P10................................................................................................................... 26

Prevention Recommendation: P11................................................................................................................... 26

Prevention Recommendation: P12................................................................................................................... 27

Prevention Recommendation: P13................................................................................................................... 27

Prevention Recommendation: P14................................................................................................................... 27

Prevention Recommendation: P15................................................................................................................... 27

Prevention Recommendation: P16................................................................................................................... 27

Prevention Recommendation: P17................................................................................................................... 27

Prevention Recommendation: P18................................................................................................................... 28

Prevention Recommendation: P19................................................................................................................... 28

Prevention Recommendation: P20................................................................................................................... 28

RESEARCH ........................................................................................................................................................... 29

Research Recommendation: R1 ....................................................................................................................... 29

Research Recommendation: R2 ....................................................................................................................... 29
Research Recommendation: R3 ....................................................................................................................... 29

Research Recommendation: R4 ....................................................................................................................... 29

Research Recommendation: R5 ....................................................................................................................... 29

Research Recommendation: R6 ....................................................................................................................... 30

Research Recommendation: R7 ....................................................................................................................... 30

Research Recommendation: R8 ....................................................................................................................... 30

Research Recommendation: R9 ....................................................................................................................... 30

Research Recommendation: R10 ..................................................................................................................... 31

SERVICES ............................................................................................................................................................. 32

Services Recommendation: S1 ......................................................................................................................... 32

Services Recommendation: S2 ......................................................................................................................... 32

Services Recommendation: S3 ......................................................................................................................... 32

Services Recommendation: S4 ......................................................................................................................... 32

Services Recommendation: S5 ......................................................................................................................... 32

Services Recommendation: S6 ......................................................................................................................... 32

Services Recommendation: S7 ......................................................................................................................... 33

Services Recommendation: S8 ......................................................................................................................... 33

Services Recommendation: S9 ......................................................................................................................... 33

Services Recommendation: S10 ....................................................................................................................... 33

Services Recommendation: S11 ....................................................................................................................... 33

Services Recommendation: S12 ....................................................................................................................... 33

Services Recommendation: S13 ....................................................................................................................... 34

Services Recommendation: S14 ....................................................................................................................... 34

Services Recommendation: S15 ....................................................................................................................... 34

Services Recommendation: S16 ....................................................................................................................... 34

Services Recommendation: S17 ....................................................................................................................... 34

Services Recommendation: S18 ....................................................................................................................... 34

Services Recommendation: S19 ....................................................................................................................... 35

Services Recommendation: S20 ....................................................................................................................... 35

Services Recommendation: S21 ....................................................................................................................... 35

Services Recommendation: S22 ....................................................................................................................... 35

Services Recommendation: S23 ....................................................................................................................... 35

Services Recommendation: S24 ....................................................................................................................... 35

Services Recommendation: S25 ....................................................................................................................... 35

Services Recommendation: S26 ....................................................................................................................... 36

Services Recommendation: S27 ....................................................................................................................... 36

OTHER................................................................................................................................................................... 37

Other Recommendation: O1 ............................................................................................................................ 37

Other Recommendation: O2 ............................................................................................................................ 37

APPENDIX B - ACTION STEPS BY OPERATING DIVISION.......................................................................... 38

APPENDIX C - GLOSSARY................................................................................................................................. 39
Process Participants

National Minority HIV Working Group

Mr. James Abrams (deceased)

Native American AIDS Project

San Francisco, CA

Ms. Pua Aiu

Papa Ola Lokahi

Honolulu, HI

Mr. Ignatius Bau

API Health Forum

San Francisco, CA

Mr. Jerome Boyce

Detroit, MI

Mr. Vincent Crisostomo

API Wellness Center

San Francisco, CA

Mr. Dennis de León

Latino Commission on AIDS

New York, NY

Ms. Cissy Elm

American Indian Community House

Syracuse, NY

Dr. Damian Goldvarg

CARE Programs

Long Beach, CA

Mr. Melvin Harrison

Navajo AIDS Network

Chinle, AZ

Ms. Marshia Herring

SF Dept. of Health AIDS Office

San Francisco, CA

Mr. Ernest Hopkins

San Francisco AIDS Foundation

San Francisco, CA

Mr. Kiyoshi Kuromiya

Critical Path AIDS Project

Philadelphia, PA

Mr. Juan Ledesma

El Rescate

Los Angeles, CA

Mr. Miguel Milanés

Florida Department of Family Services

Miami, FL

Ms. Mary Moreno

Austin, TX

Ms. Suki Terada Ports

Family Health Project

New York, NY

Ms. Andrea Green Rush

Francis J. Curry National Tuberculosis

Center

San Francisco, CA

Ms. Karlita A.M. Tarpenning

Seattle Indian Health Board

Seattle, WA

Mr. Tom Valverde

Hispanic AIDS Coalition

Kansas City, KS

Dr. Darrell Wheeler

Columbia University School of Social Work

New York, NY

Ms. Dana Williams

St. Louis Metro AIDS

St. Louis, MO

Mr. John Wilson

Many Farms, AZ

Mr. Phill Wilson

University of Southern California

Los Angeles, CA

Dr. Frank Wong

Fenway Community Health Center

Boston, MA
Federal Staff

Project Director

Mr. Matthew Murguía

U.S. Department of Health and

Human Services

Office of the Secretary

Office of Minority Health

Operating Division Coordinators

Georgia Buggs, R.N.

U.S. Department of Health and

Human Services

Office of the Secretary

Office of Minority Health

Richard Klein

Food and Drug Administration

David Lanier, M.D.

Agency for Health Care Policy and

Research

Frank Martin, D.D.S.

Indian Health Service

M. Valerie Mills, M.S.W.

Substance Abuse and Mental Health

Services Administration

Angela Powell

Health Resources and Services

Administration

Dawn Smith, M.D.

Centers for Disease Control and

Prevention

Wendy Wertheimer

National Institutes of Health

Contractor

Project Manager

Carlos Vélez, J.D.

Vélez Associates

Staff

Donald Babb-Maldonado

Lowell T. Hickman

Anaín J. Romero

Stephen A. Trujillo

Ex-Officio Members

The Working Group wishes to recognize

the contributions of the following

individuals for their voluntary

participation in the Process:

Mr. Tyrone Howze

St. Louis, MO

Ms. Valerie Rochester

Washington, DC
Report

to the Secretary

on

HIV/AIDS in Racial and Ethnic

Communities

HISTORY

I Statistics

The Centers for Disease Control and Prevention (CDC) started tracking the HIV/AIDS epidemic in

June 1981, when an announcement was made regarding a rare form of cancer afflicting homosexual

men. In 1987, HIV/AIDS was added as one of the priority health issues for the Office of Minority

Health. At that time, some 40 percent of the individuals who had been diagnosed with AIDS were

from racial and ethnic communities. As of June 1998, 665,357 individuals had been diagnosed

with AIDS -- some 55 percent from racial and ethnic minority populations.

In 1998, CDC also reported that 42,084 cases of AIDS were diagnosed in the twelve months ended on June

30, 1998, which was a decrease from the 60,634 reported in the same period a year earlier. Of this number,

26,454 were among members of minority communities. This represents approximately 63 percent of the

total AIDS cases reported in that period, even though minorities comprise approximately 25 percent of the

total U.S. population. Of the cases diagnosed among adolescents and young adults (ages 13-24), 65 percent

are from racial and ethnic populations. Today, nearly 80 percent of all women diagnosed with HIV and

more than 80 percent of pediatric AIDS cases are among racial and ethnic individuals.

While the number of AIDS cases and deaths in the U.S. has declined in the past several years, the

number of new HIV infections in the United States continues at an estimated 40,000 each year.

The decrease in mortality and newly diagnosed AIDS cases has been very encouraging, but it has

not been proportionate in racial and ethnic populations as in non-minority populations. Research

shows that members of racial and ethnic communities, especially women, youth and heterosexuals

have now begun to bear the brunt of the epidemic. These populations have been historically

underserved, have had limited access to services and treatment, and have traditionally not benefited

at the same level from current prevention, services and research efforts. Prevention funding, by the

Federal government’s own admission, is not proportionate to the caseload that the various

populations face. Research shows that minorities are less likely to be prescribed triple-drug

treatment combinations, and until recently, participation rates by minorities in clinical trials has

lagged compared to those of non-minority males.

II Background

In 1989 the Office of Minority Health (OMH) sponsored the nation’s first national minority HIV

conference, a full two years after adding HIV/AIDS to its priority health concerns. This conference

focused on HIV prevention, services and research issues and how they impacted minority

communities. Prior to 1989, the CDC had sponsored a series of national prevention conferences
Page 2 - History

focusing on racial/ethnic communities, which were essential in providing the tools necessary for

racial and ethnic communities to address the growing epidemic in their communities. The

conferences also assisted Federal agencies in gaining and understanding of the unique concerns and

issues to be addressed in order to successfully implement prevention, service and research

programs in minority communities.

In 1991, OMH sponsored a series of eight regional minority HIV/AIDS conferences. In 1994,

OMH sponsored, “Breaking Barriers, Building Bridges: The First National Congress on the State

of HIV in Racial and Ethnic Communities.” As part of this conference, participants and agencies

were asked to develop “action plans” to implement when they returned to their homes and offices.

In her plenary speech, the Secretary committed the Department to follow-up activities, and

assigned OMH as the lead in developing them.

In response, OMH co-sponsored the Racial/Ethnic Institutes, which were part of the National Skills

Building Conference in 1996. At these Institutes, participants presented 165 recommendations

which they believed needed to be implemented in order to meet the needs of racial and ethnic

populations. One specific recommendation focused on the need to develop a racial/ethnic-specific

national plan to address HIV-related issues. In the view of the Institute participants, despite the

continuing disproportionate impact of HIV on racial/ethnic populations, no such plan existed.

III Report Development Process

In March 1997, OMH approached the Co-chairs of the 1996 Racial/Ethnic Institutes to assist OMH

in identifying the steps that would follow. The Co-Chairs asked OMH to develop a process which

would allow community representatives to interact with federal agency staff and arrive at a

National Plan, including specific action steps to address these recommendations made in 1996.

OMH believed it important to follow the recommendation of the Co-Chairs and attempt to address

as many of the recommendations as possible, involving the community and the relevant HHS

agencies in the development of responses.

Working with the co-chairs and through a national nominating process, approximately 60

individuals were identified as potential members of the working group. The co-chairs

recommended to the Deputy Assistant Secretary for Minority Health 20 individuals who they

believed should be asked to be part of the working group. OMH and the Co-chairs were careful to

ensure representation in terms of race, ethnicity, HIV status, sexual orientation, professional

background and region. Individuals were nominated from across the United States, and based on

established criteria (e.g., knowledge of issues, previous experience with planning documents), were

asked to participate. The working group was equally balanced among the four racial/ethnic groups,

as were the co-chairs. Each person was assigned to a sub-committee -- prevention, services and

research -- based on their prior experience and interest.

OMH also requested that HHS operating divisions carrying out HIV/AIDS activities appoint a

person to represent their agency on the Working Group. At the request of the Deputy Secretary the

agency heads for the Agency for Health Care Policy and Research, Centers for Disease Control and

Prevention, Food and Drug Administration, Indian Health Service, Health Resources and Services

Administration, National Institutes of Health, and the Substance Abuse and Mental Health Services
History - Page 3

Administration appointed staff to participate in the process. In addition, the Office of HIV/AIDS

Policy and the Office of Women’s Health were invited to participate in Working Group meetings.

The first full meeting of the Working Group and federal representatives was held in September

1997 in Miami, Florida in conjunction with the United States Conference on AIDS. It was

apparent to those present that some of the recommendations were no longer applicable due to

policy changes within HHS, new federal laws, or new programmatic activities by the agencies. At

this meeting, the recommendations were refined and reduced from 165 to approximately 75. It was

agreed that OMH would take the lead in developing potential action steps to implement the 75

recommendations, and then reconvene the Working Group and Federal representatives to discuss

specific action steps.

In April 1998, OMH reconvened the Working Group and Federal representatives to discuss the 75

recommendations. Prior to the meeting, the Deputy Secretary requested each agency head send

“high level individuals” to this meeting to represent their agencies, in order to ensure that decisions

about specific actions steps could be made at this meeting, and that agency commitments would be

honored. This was in addition to agency representatives who had been involved in the process

since 1997.

Given time constraints, the Working Group was asked to identify their priority recommendations to

ensure that those would be discussed during this meeting. Approximately 25 recommendations

were identified, with the understanding that the remaining recommendations were still of concern

to the Working Group. During the April meeting, some 75 “action steps” were developed and

agreed to by agency representatives as appropriate to implement in order to address the

recommendations. These “action steps,” are contained in this Report to the Secretary.

The original 165 recommendations, which served as basis for discussions between the working

group and Federal representatives, are presented for historical purposes in Appendix C. In

addition, those recommendations discussed in detail during the April 1998 meeting are marked

with an asterisk. It must be noted that several of the remaining recommendations are themselves

out of date or have been superseded by federal law or Departmental policy.

IV Action Steps

The Action Steps contained in this Report to the Secretary are those which were agreed to by

Federal agency representatives during the April 1998 meeting. During this meeting, each federal

agency was represented at the table while each recommendation was discussed. Federal agency

representatives were appointed by their agency head, at the request of the Deputy Secretary, to

represent their agency at these Working Group meetings. The interaction at the meeting led to a

better understanding on the part of the agencies of the needs of racial and ethnic communities and

to a better understanding on the part of the minority community of the possibilities and limits in

which the agencies must operate. In addition, the meeting gave a better understanding by the

agencies of their sister agencies’ programs and priorities. It was with good faith and trust built over

many years of working in collaboration with the Office of Minority Health that community

representatives were able to engage in an open, honest dialogue with the Federal agency

representatives.
Page 4 - History

V Relationship to Other Departmental HIV/AIDS Activities

This Report to the Secretary must be placed in the context of other HIV/AIDS activities currently

being implemented by the HHS. These include the Congressional Black Caucus Initiative, the

HHS Initiative to Eliminate Racial and Ethnic Disparities in Health, and the People of Color

Activities at the Center for Disease Control and Prevention.

Congressional Black Caucus Initiative

Under the leadership of the Congressional Black Caucus, Congress appropriated an additional $156

million in funding in FY 1999 specifically focusing on the HIV/AIDS needs of African American

and other racial/ethnic communities. This funding was in large part in response to the call for a

state of emergency in the African American community regarding HIV/AIDS. While a state of

emergency was not declared, the HHS recognized a “persistent and ongoing health crisis” among

African Americans and other minorities and has developed a series of programmatic responses to

address this crisis.

HHS Initiative to Eliminate Racial and Ethnic Disparities in Health

On February 21, 1998 the President committed the Nation to an ambitious goal: by the year 2010,

eliminate the disparities in six areas of health status experienced by racial and ethnic minority

populations while continuing the progress we have made in improving the overall health of the

American people. HHS is leading this effort to eliminate disparities in health access and outcomes

in: 1) Infant Mortality; 2) Cancer Screening and Management; 3) Cardiovascular Disease; 4)

Diabetes; 5) HIV Infection and; 6) Child and Adult Immunizations. As part of this effort, CDC is

spearheading a working group to analyze current efforts and to recommend targeted technical input

on HIV/AIDS programming in communities of color. The National Minority HIV Working Group

understood the implication of the Congressional Black Caucus Initiative and has strived to take

new funding and program priorities into consideration as it develops its report to the Secretary.

CDC People of Color Activities

CDC is currently instituting a series of activities that focus on black, Hispanic, American Indian

and Alaska Native, and Asian and Pacific Islander communities which involves identifying and

removing barriers to successful HIV prevention. CDC is utilizing a series of meeting with internal

and external consultants to review and analyze current CDC programmatic priorities and

mechanisms for working with racial and ethnic communities.

All four efforts described here (this Report to the Secretary, the Congressional Black Caucus

Initiative, the HHS Initiative to Eliminate Racial and Ethnic Disparities in Health, and the CDC

People of Color Activities), complement each other. This Report to the Secretary focuses equally

on all four major racial/ethnic groups (Black, Hispanic, Asian and Pacific Islander, American
History - Page 5

Indian/Alaska Native) and has had as its hallmark the need to address all four groups equally --

thus following OMH’s legislative mandate. The other initiatives have been developed partly in

response to the extreme impact that HIV/AIDS is having on the Black community, and thus most

of their efforts are aimed at addressing the specific needs of this community.

This Report to the Secretary, and the action steps its contains, focus on three main areas (technical

assistance, information dissemination, and inclusion). The other initiatives go beyond this and

contain specific programmatic initiatives aimed at specific target populations (African Americans,

Hispanics/Latinos, Asian/Pacific Islanders and Native Americans/Alaska Natives). Therefore,

action steps contained in this Report complement the activities described in the other initiatives and

which in turn complement the action steps contained herein.

In addition, the Report to the Secretary (originally the Interim National Minority HIV Plan) was

used, in part, as a basis for the development of the other activities. Major portions of this Report to

the Secretary are included in the Eliminating Racial and Ethnic Health Disparities Initiative initial

report to the Secretary. Similarly, the activities contained in the CBC Initiative complement the

actions steps contained in this Report to the Secretary. Finally, one of the action steps agreed to by

CDC and included herein involves the inclusion of Working Group members in the CDC People of

Color Activities working groups.

The four efforts are each necessary and address specific concerns of racial/ethnic communities.

The challenge is to ensure that coordination of efforts and a sharing of information occurs on an

ongoing basis. With OMH’s role as the lead in following the implementation of the action steps

contained in this Report, and the degree of participation in all four initiatives, the potential for this

coordination and collaboration is great. OMH is represented on the CBC Initiative Implementation

Group, the Eliminating Health Disparities in Racial and Ethnic Communities Working Group and

National Minority HIV Working Group members will be part of the CDC People of Color

Activities group.

Because of the time frame in which this Report has been developed (the first meeting of the

working group was convened in September 1997), several of recommendations and actions steps

are already being addressed by the agencies. In addition, it is possible that several have become

obsolete and thus are no longer appropriate for consideration. However, they are still included in

this Report so that the Department may report back on activities which were implemented to

address them, or provide information as to why a specific recommendation is no longer appropriate

(e.g., needle exchange).

Page 6 - Preamble

Preamble

This and the issue-specific preambles were developed by the members of the National Minority HIV

Working Group during the April 6-7, 1978 meeting and were read prior to the discussion at the

meeting of April 6-7, 1998. The preambles represent the views of the Working Group and provide

context to the discussions that followed.

“We want to share our passion and concern for what constitutes a state of

emergency for people of color communities. The way federal, state, local and

communities currently conduct business relative to the HIV/AIDS pandemic in

these communities is no longer acceptable.

In the spirit of collaboration, we want the next day and half, that together we

create new systems of responses to communities of color.

Given this urgency, we need to redefine how to address the needs of each

community in flexible and specific ways. Toward this end, we believe in the need

for innovative and creative means which are measurable, specific and time-phased

that allow for flexible responses and accountability within coordinated linkages

between communities and inter/intra agencies.”

Action Steps - Page 7

Issue Areas

I Prevention

Prevention Preamble

“In the spirit of collaboration shown at this meeting, we would like to express our

concern that prevention and intervention strategies that discuss primary and secondary

prevention to each community, African-American, Hispanic, American Indian and Asian

and Pacific Islander, be developed regardless of the lack of epidemiological data.

There is a need for an ongoing collaboration between communities of color with federal,

state and local agencies. In addition, an appropriate level of resources—legislative,

funding and human resources—is critical to the success of prevention efforts. While we

applaud the spirit behind the Community Planning Process, it is time to reevaluate its

effectiveness in working with communities of color.

Our goal here is to strengthen the partnerships between our communities and the federal

agencies represented so that we can prevent the continuing spread of HIV among all

racial and ethnic groups.”

Prevention Action Steps

A. HHS Initiative to Eliminate Racial and Ethnic Disparities in Health

(1) CDC is taking the lead on HHS activities on the HHS Initiative to Eliminate Racial and Ethnic

Disparities in Health as it relates to HIV. As CDC takes steps to implement the initiative, it will

make information available to minority communities, community-based organizations (CBOs)

and AIDS Service Organizations (ASOs) regarding activities that are ongoing and how to provide

input. This information will include updates on the establishment of ethnic-specific committees.

Agency: CDC

Time line: 6 months

Recommendation: Prevention P20

(2) CDC is in the process of recruiting consultants to assist with the various activities related to its

People of Color Initiative. As this process progresses, CDC will make available information

regarding how the consultants are selected and how community members can be included in that

process.

Agency: CDC

Time line: 6 months

Recommendation: Prevention P20

(3) Individual members of the National Minority HIV Working Group will be selected to join the

committees assisting CDC on the Presidential Initiative on Racial and Ethnic Health Disparities

and the People of Color Initiative. As to the African American committee, a member of the

Working Group will be selected at the earliest possible opportunity. CDC will seek the input

from the National Minority HIV Working group and the Presidential Advisory Board on HIV in

the development of activities under the Presidential Initiative.
Page 8 - Action Steps

Agency: CDC

Time line: 6 months

Recommendation: Prevention P20

(4) Other HHS Operating Divisions (OpDivs) will collaborate with CDC in the development and

implementation of HIV activities related to the Presidential Initiative on Racial and Ethnic Health

Disparities. HHS OpDivs will also assist in the dissemination of information on the Initiative

Process and in the collection of input from the community.

Agency: HHS OpDivs

Time line: 12 months

Recommendation: Prevention P20

B. Coordination of HIV Prevention and Substance Abuse

(1) The Substance Abuse and Mental Health Services Administration (SAMHSA) will begin the

development of an HIV/AIDS Strategic Plan during fiscal year (FY) 1998, which will include

interagency coordination between HIV and substance abuse prevention and treatment. The

process will include a mechanism for coordinating activities with other OpDivs. SAMHSA will

disseminate information on the planning process, how the community can provide input and when

the completed plan will be made available for comment.

Agency: SAMHSA

Time line: 12 months

Recommendation: Prevention P20

(2) SAMHSA will carry out a series of regional meetings in FY1998, where community

representatives will have an opportunity to interact with SAMHSA staff regarding programs.

SAMHSA will coordinate with the OMH Resource Center so that minority communities, CBOs

and ASOs that engage in HIV Prevention and Service program may have an opportunity to attend

these regional meetings.

Agency: SAMHSA

Collaborating Agency: OMH

Time Line: 6 months

Recommendation: Prevention P9

(3) SAMHSA and collaborating OpDivs will disseminate information on the interagency

collaboration arising out of the Preventing Substance Abuse and HIV: A National Leadership

Forum (Tampa meeting), held August 14-16, 1996. Information to be disseminated will include

the current status of action items arising out of that meeting and ongoing activities where minority

CBOs and ASOs can provide input. Collaborating OpDivs will also disseminate their efforts in

this area and make available contact information for the community.

Agency: SAMHSA

Collaborating agency: OMH

Time line: 6 months
Action Steps - Page 9

Recommendation: Prevention P1

(4) SAMHSA’s Center for Substance Abuse Prevention (CSAP) has materials on HIV Prevention

and Substance Abuse that will be made available to the OMH Resource Center for dissemination

to minority communities, CBOs and ASOs that carry out HIV activities.

Agency: SAMHSA

Collaborating agency: OMH, CDC

Time line: 6 months

Recommendation: Prevention P1

(5) The National Institutes of Health (NIH), through HIVNET, a web-based system, will disseminate

information to the public on issues relevant to HIV/AIDS prevention. NIH will coordinate with

OMH on making available the information on HIVNET to minority communities, CBOs and

ASOs.

Agency: NIH

Collaborating agency: OMH

Time line: 6 months

Recommendation: Prevention P1

C. Grant Administration

(1) HHS will develop a mechanism by which minority communities, CBOs and ASOs can obtain

information regarding the criteria for evaluating proposals submitted through the grant process.

The information will include the weight given the various components of the proposal, including

the cultural competence of the organization requesting funding. This information will be

provided on an ongoing basis in addition to what is currently provided through requests for

proposals (RFPs).

Agency: Office of Minority Health (OMH)/Office of the Secretary (OS)

Collaborating agency: HHS OpDivs

Time line: 12 months

Recommendation: Prevention P11

(2) HHS will take steps to ensure that the composition of grant application review committees more

closely reflect the targeted population of the RFP. In addition, review committee members shall

demonstrate experience in proposal review, knowledge of HIV and related issues, and/or

competency in the delivery of AIDS prevention or health services.

Agency: Office of Minority Health (OMH)/Office of the Secretary (OS)

Collaborating agency: HHS OpDivs

Time line: 12 months

Recommendation: Prevention P11
Page 10 - Action Steps

D. Technical Assistance

(1) Technical assistance (TA) areas that CDC provides to Community Planning Groups (CPGs) will

include continued and expanded use of surrogate markers as identified in the HIV Prevention

Indicators Project (1996), including surrogate markers that may be more prevalent in a particular

population, such as relevant epidemiological and surveillance data, census data and others.

Agency: CDC

Time line: 6 months

Recommendation: Prevention P9

(2) SAMHSA will collaborate with CDC to provide Community Planning Groups (CPGs), minority

communities, CBOs and ASOs with information on substance abuse surrogate markers that will

assist in devising strategies for HIV prevention.

Agency: SAMHSA

Collaborating agencies: OMH and CDC

Time line: 6 months

Recommendation: Prevention P1

(3) CDC currently provides technical assistance to CPGs on a wide variety of issues. The TA topics

that CDC will provide to CPGs will include information and strategies for HIV prevention among

minority gay, lesbian, bisexual, transgender and questioning youth.

Agency: CDC

Time line: 12 months

Recommendation: Prevention P6

E. HIV Prevention Community Planning Groups

(1) CDC will make available to CPGs, minority communities, CBOs and ASOs statistical and

funding data that may assist in the development of priorities at the local level. This data includes,

but is not limited to, funding allocations by population and racial/ethnic background.

Agency: CDC

Time line: 8 months

Recommendation: Prevention P14 (P17 incorporated)

(2) CDC will provide CPGs, minority communities, CBOs and ASOs demographic and qualitative

data regarding CPG composition. This data has to be compiled by health departments funded by

CDC. This data will be enhanced by CDC to include qualitative data regarding the effectiveness

of CPG members from communities of color.

Agency: CDC

Time line: 6 months

Recommendation: Prevention P14 (P17 incorporated)
Action Steps - Page 11

(3) CDC is in the process of revising the Community Planning Guidance, which will be available for

comment later in 1998. CDC will disseminate information regarding the availability of the

guidance for comment through the Federal Register and other means so that minority

communities, CBOs and ASOs may provide comment.

Agency: CDC

Time line: 12 months

Recommendation: Prevention P14 (P17 incorporated)

(4) SAMHSA’s Block Grant Project Officers will encourage the staff of the Single State Agency on

Substance Abuse to participate actively in the CPGs to encourage coordination of activities and

funding. This will be particularly helpful in those states where there is an HIV set-aside as part of

the block grant.

Agency: SAMHSA

Time line: 12 months

Recommendation: Services S12

F. Adolescent and School Health

(1) CDC’s Divisions of HIV/AIDS Prevention (DHAP) and Adolescent and School Health (DASH)

will make available to CPGs, minority communities, CBOs and ASOs information on current

funding allocations for youth. DASH will also provide information on what activities are carried

out by grantees at the state level.

Agency: CDC

Collaborating agency: OMH

Time line: 6 months

Recommendation: Prevention P6
Page 12 - Action Steps

II Research

Research Preamble

“The concept of research is often intimidating to communities of color, with a legacy that

is not positive and presents unique challenges to the participation of these communities in

all aspects of the research process. Traditional research methodologies do not

incorporate or validate cultural and community norms. However, the research of today

will set the standards for the interventions and treatments of tomorrow.

Therefore, it is imperative that HIV-related research ensure the participation of

communities of color in order to more effectively serve them. Research activities should

be conceptualized and implemented in a culturally and linguistically competent manner,

including the review process leading to grant allocations, the administration of research

programs and the dissemination of research findings.”

Research Action Steps

A. Research Agenda

(1) HHS OpDivs will take proactive steps to obtain input from minority communities, CBOs and

ASOs in the development of their research agenda. This will include the incorporation of the

action steps included herein into their individual agendas and providing information to the general

public regarding mechanisms for providing input into the research agendas.

Agency: DHHS

Collaborating agency: NIH, CDC, SAMHSA and HRSA

Time line: 12 months

Recommendation: Research R9

(2) DHHS agencies will collaborate and coordinate in their processes when establishing research

agendas by informing each other of meetings and activities related to the development of their

own research agendas.

Agency: DHHS

Collaborating agency: NIH, CDC, SAMHSA and HRSA

Time line: 12 months

Recommendation: Research R9

(3) NIH is currently working on the development of the research agenda for FY 2000, which includes

regular meetings of a working group that provides input on the agenda process. NIH will make

information available to minority communities, CBOs and ASOs regarding the composition of

this working group and what is necessary to provide input to this process.

Agency: NIH

Time line: 6 months

Recommendation: Research R3
Action Steps - Page 13

B. Behavioral Research

(1) CDC and NIH will explore the need for expanding the number and scope of research on

behavioral interventions in minority communities. This analysis will include the extent to which

current research activities are addressing the need to identify successful behavioral interventions

aimed at members of racial and ethnic communities. Additional activities will be coordinated

with academic institutions that serve large numbers of members of racial and ethnic communities.

Agency: CDC

Collaborating Agency: NIH

Time line: 12 months

Recommendation: R7

(2) The Office of Technology Assessment (OTA) published a document consisting of a literature

review on HIV behavioral interventions targeting racial and ethnic communities. This document

highlighted the lack of research on behavioral interventions targeting members of racial and

ethnic communities. CDC and NIH will assist in making this report available to minority

communities for use in the development of a behavioral research agenda.

Agency: CDC

Collaborating Agency: NIH

Time line: 12 months

Recommendation: R7

(3) CDC will examine the need for additional behavioral research on risk behaviors in specific

racial/ethnic populations. In ascertaining the specific areas for study, CDC will seek the input of

CPGs and minority CBOs and ASOs in developing research agendas for future years.

Agency: CDC

Time line: 12 months

Recommendation: Research R3

C. Surveillance and Epidemiology

(1) The Public Use Data Set contains valuable epidemiological information on HIV. These data,

although available, may require additional technical assistance in order to be used by individuals

unfamiliar with the data set. CDC will work with CPGs, minority communities, CBOs and ASOs

on ways to make the Public Use Data Set more user-friendly.

Agency: CDC

Time line: 12 months

Recommendation: Research R3

(2) To the extent that specific cultural attributes may impact on the effectiveness of data collection,

CDC will work proactively with minority communities, CBOs and ASOs to develop and

implement data collection instruments and methodologies for specific populations.

Agency: CDC
Page 14 - Action Steps

Time line: 12 months

Recommendation: Research R3

(3) CDC and NIH will develop ways of working with state and local governments to encourage

health care professionals to gather more specific demographic information regarding risk

behavior, especially complete, self-reported information on race, ethnicity, tribal affiliation and

national origin.

Agency: CDC

Collaborating Agency: NIH

Time line: 12 months

Recommendation: Research R3

(4) To the extent that specific populations are not widely represented in statistics, NIH and CDC will

over sample specific populations in some studies to achieve statistically significant results. The

first step in this activity will be the development of standardized criteria for determining which

populations may require oversampling.

Agency: NIH

Collaborating Agency: CDC

Time line: 12 months

Recommendation: Research R6

D. Inclusion in Clinical Trials

(1) NIH will review its current target populations listed in upcoming RFPs and announcements to

enhance the inclusion of youth in existing and new clinical trials. NIH will include transgenders

as a population to be included in clinical trials.

Agency: NIH

Time line: 12 months

Recommendation: Research R4

(2) NIH will provide minority communities, CBOs and ASOs with data on the participation of

members of racial and ethnic populations in their existing and new clinical trials. NIH will also

use this data to explore new ways of increasing participation of members of racial and ethnic

communities in clinical trials.

Agency: NIH

Time line: 12 months

Recommendation: Research R4

(3) FDA regulations require that informed consent forms used in the recruitment of participants in

clinical trials be in language that can be understood by the participants. This regulation is

clarified in guidance related to new drug applications. FDA will make this guidance available for

comment by members of minority communities.

Agency: FDA
Action Steps - Page 15

Time line: currently

Recommendation: Research R4

(4) NIH will develop new and creative ways to work with minority communities, CBOs and ASOs

regarding the availability of clinical trials and the process for the recruitment of clinical trial

participants. NIH will explore the use treatment advocates and peer educators to assist in this

effort.

Agency: NIH

Time line: 12 months

Recommendation: Research R7

E. Dissemination of Findings

(1) NIH will work with their contractors to expand the availability of research findings to the

participants in clinical trials and the general public in non-technical language. To the extent

possible, NIH will also ascertain the need for developing materials in languages other than

English.

Agency: NIH

Time line: 12 months

Recommendation: Research R4

(2) NIH routinely collects specific data on the participants in clinical trials, which are not generally

made available to the public. NIH will compile and extract population specific data on existing

and new clinical trials and provide findings to minority communities, CBOs and ASOs.

Agency: NIH

Time line: 12 months

Recommendation: Research R6

(3) NIH will conduct an analysis of the need to develop materials in various languages containing

findings from clinical trial research. Materials will be produced in those instances where there is

demand for materials in languages other than English.

Agency: NIH

Collaborating agency: CDC and HRSA

Time line: 12 months

Recommendation: Research R7

(4) NIH will explore the use of peer advocates for the dissemination of clinical trial information to

participants. Whenever possible, peer advocates will be recruited to assist in the dissemination of

clinical trial findings.

Agency: NIH

Collaborating agency: CDC and HRSA

Time line: 12 months
Page 16 - Action Steps

Recommendation: Research R7

(5) SAMHSA will disseminate information and findings of their Exemplary Models initiative, which

evaluates substance abuse prevention projects and makes them available for replication. HRSA

will disseminate similar information regarding the Models That Work initiative, which

encourages the replication of effective community-based primary care models.

Agency: SAMHSA

Collaborating agency: HRSA, OMH

Time line: 12 months

Recommendation: Research R9

(6) CDC will continue to identify, recognize, support and make available information on

reputationally strong HIV prevention models and programs.

Agency: CDC

Timeline: 12 months

Recommendation: Research R9

F. Health Care Services Research

(1) The Agency for Health Care Policy and Research (AHCPR) is in the process of completing the

Health Care Services Utilization Study (HCSUS), which will provide data on the use of health

care services by people living with HIV, including members of racial and ethnic communities.

The findings of this study will be made available six (6) months after its completion. AHCPR

will take steps to ensure that minority communities, CBOs and ASOs have access to this

information.

Agency: AHCPR

Time line: FY 1999

Recommendation: Research R6

G. Alternative Medicine

(1) The NIH Office of AIDS Research (OAR) will seek ways of expanding collaboration with the

NIH Office of Alternative Medicine, in particular in the development of activities specific to

racial and ethnic communities.

Agency: NIH

Time line: 12 months

Recommendation: Research R7

H. Research Nomenclature

(1) HHS OpDivs currently use specific nomenclature in the development of research protocols and

program activities, but some of the terms are not used consistently across all the OpDivs. The

OpDivs will coordinate the use of language used in research and program development so that

there can be a common understanding of what the terms mean, especially primary and secondary

prevention.
Action Steps - Page 17

Agency: NIH

Collaborating agency: CDC, SAMHSA and HRSA

Time line: 12 months

Recommendation: Research R7

I. Grant Administration

(1) NIH will expand the availability of information on the structure and operations of clinical and

behavioral research activities. NIH will also seek new and creative ways, including the use of

treatment advocates and peer educators, to provide information on NIH operations to members of

minority communities.

Agency: NIH

Time line: 12 months

Recommendation: Research R4

(2) HHS OpDivs will work to ensure the participation in grant review panels individuals who have

specific knowledge of the target community in all levels of the grant review process.

Agency: DHHS

Collaborating agency: NIH, CDC, SAMHSA and HRSA

Recommendation: Research R9

(3) All HHS OpDivs will take steps to standardize and implement the use of culturally competent,

appropriate and sensitive instruments to capture data.

Agency: DHHS

Collaborating agency: NIH, CDC, SAMHSA and HRSA

Time line: 12 months

Recommendation: Research R9

J. Capacity Building

(1) HHS agencies will work together to find ways to strengthen academic institutions serving large

numbers of members of racial and ethnic communities to increase the number of health care

providers and researchers.

Agency: DHHS

Time line: 12 months

Recommendation: Research R9
Page 18 - Action Steps

III Services

Services Preamble

“We, the Services Issues Committee, believe that the Department of Health and Human

Services, territorial, state and local health departments should ensure that adequate and

comprehensive HIV care should be made available and provided in all communities of

color, regardless of health status, income, immigration status, language ability or level of

education. Access to culturally appropriate care and its provision must be designed with

the collaboration of each community.”

Services Action Steps

A. Program Data

(1) HRSA will provide information on how Ryan White Titles III/IV activities are impacting racial

and ethnic communities. This information will be made available to minority communities,

CBOs and ASOs for use in determining what services are available in a particular community.

Agency: HRSA

Time line: 12 months

Recommendation: Services S18

(2) One of the primary questions regarding the distribution of service funding in minority

communities is the actual number of minority subgrantees currently receiving this funding and the

funding levels being distributed. HRSA will develop a list of minority subgrantees divided by

Title and will make it available to Planning Councils and other entities that may need this

information.

Agency: HRSA

Time line: 12 months

Recommendation: Services S18

(3) HRSA will conduct an evaluation of HIV service activities of its Ryan White Titles to ascertain

the impact of HIV related services in minority communities. Based on the results of this

evaluation, HRSA will seek ways and developing mechanisms to develop information on models

and of addressing unmet needs in racial and ethnic communities.

Agency: HRSA

Time line: 12 months

Recommendation: Services S18

B. Grievance Procedures

(1) HRSA will establish a mechanism for providing information regarding the currently available and

projected grievance procedures available at the state and local level. This information will be

accompanied by technical assistance on the most effective way of having grievances addressed

and information on what alternative means are available to consumers and to the public in general

in situations where there are conflicts.
Action Steps - Page 19

Agency: HRSA

Time line: 12 months

Recommendation: Services S18

C. Capacity Building

(1) HRSA will provide evaluation information regarding Ryan White CARE Act-related technical

assistance activities to Ryan White Planning Councils, minority communities, CBOs and ASOs.

HRSA will use this information in order to conduct an assessment of the need for capacity

building activities regarding minority communities.

Agency: DHHS

Collaborating agency: CDC and HRSA

Time line: 12 months

Recommendation: Research S18

(2) HRSA will provide expanded and additional TA on the legislative requirements of the CARE Act

so that minority communities will have the information available on the roles and responsibilities

of HRSA, grantees and subgrantees.

Agency: HRSA

Time line: 12 months

Recommendation: Services S18

D. Program Nomenclature

(1) The various HHS Operating Divisions use the terminology developed by the Office of

Management and Budget (OMB) to determine whether an individual is a member of a minority

community. In terms of what constitutes a minority CBOs or ASOs, the definition is not clearly

stated for all the HHS agencies. This has created some confusion as to the exact criteria for

applying for funding earmarked for minority CBOs and ASOs. The HHS OpDivs will take steps

to standardize the definition of minority CBO and ASO.

Agency: Office of Minority Health (OMH), Office of the Secretary (OS)

Collaborating agency: CDC and HRSA

Time line: 12 months

Recommendation: Research S18

(2) HRSA has developed a specific enumeration of the requirements for effective case management.

This information is contained in a report developed by HRSA, which will be made available to

minority communities, CBOs and ASOs along with specific technical assistance regarding the

implementation of the case management model.

Agency: HRSA

Collaborating agency: SAMHSA

Time line: 12 months

Recommendation: Services S5 and S14
Page 20 - Action Steps

(3) Programs serving communities of color are not monitored closely enough to determine whether

services are being delivered in a consistent basis. HRSA will seek to develop mechanisms to

monitor program activities to ensure that programs are being delivered in a consistent and

effective manner and will develop new guidance that will specify programmatic requirements. In

the development of these mechanisms and guidance, HRSA will actively seek input from

minority communities, CBOs and ASOs.

Agency: HRSA

Time line: 12 months

Recommendation: Services S5 and S14

E. Substance Abuse Treatment

(1) SAMHSA will provide minority CBOs and ASOs with information regarding the operations of

the Federal Substance Abuse Treatment and Mental Health Services Block Grant. This

information will include who administers the funding at the state level and the guidelines for the

calculation and administration of the 5% set-aside for HIV activities.

Agency: SAMHSA

Time line: 6 months

Recommendation: Services S12

(2) SAMHSA will provide other OpDivs CBOs and ASOs with the list of Block Grant Project

Officers and their assigned states. DHHS OpDiv staff will share information on program staff in

the various states as a means of increasing communication and collaboration at the state level.

Agency: DHHS

Time line: 2 months

Recommendation: Services S12

(3) SAMHSA is currently reviewing, along with OMB, the regulations that control the disbursement

and administration of the Block Grants. This review will include the extent and types of

information that SAMHSA can request from the states regarding Block Grant administration. As

part of this review, SAMHSA will seek ways of obtaining community input regarding Block

Grant and HIV set-aside administration.

Agency: SAMHSA

Time line: 12 months

Recommendation: Services S12

(4) One of the issues being reviewed as part of the Block Grant regulation review will be the practice

of using substance treatment funds in lieu of other available funding. SAMHSA will review this

issue of supplantation of funds as part of the process of updating block grant regulations.

Agency: SAMHSA

Collaborating agency: HRSA

Time line: 12 months

Recommendation: Services S12
Action Steps - Page 21

(5) SAMHSA has information available regarding the standard of care to be used for substance abuse

treatment programs. This information is contained in the Treatment Improvement Protocols

(TIPs) that SAMHSA makes available to treatment providers. These are currently available in

English.

Agency: SAMHSA

Time line: 12 months

Recommendation: Services S12

F. Services for American Indians/Alaska Natives

(1) Due to jurisdictional limitations, the Indian Health Service (IHS) provides care to American

Indians/Alaska Natives on Indian Reservations, while HRSA provides care to qualifying

American Indians/Alaska Natives who live outside the reservation. These limitations adversely

impact American Indians who move from the reservation and later return. HRSA and IHS

currently collaborate on specific projects. This informal collaboration will be expanded by

creating staff collaboration mechanisms. Among the issues to be developed as part of this formal

collaboration will be a continuum of care for American Indians/Alaska Natives who move to and

from the reservations.

Agency: HRSA

Time line: 12 months

Recommendation: Services S5 and S14

G. AIDS Drug Assistance Program (ADAP)

(1) HRSA currently receives voluntary monthly ADAP reports from certain states, including

utilization statistics. Although these reports contain information that can be used for trend

analyses of ADAP utilization. HRSA will provide what information is available to interested

parties.

Agency: HRSA

Time line: 12 months

Recommendation: Services S5

(2) HRSA will provide information on the utilization of State ADAP programs and technical

assistance on how to use the information and statistics regarding ADAP to CBOs and ASOs.

Agency: HRSA

Time line: 12 months

Recommendation: Services S5 and S14

H. Standards of Care

(1) HRSA and several other entities have conducted studies that have looked at compliance issues for

people living with HIV. Among these is the Women’s Natural History Study, which contains

information regarding compliance among women. HRSA will make this information available to

minority CBOs and ASOs for use with their clients.

Agency: HRSA
Page 22 - Action Steps

Time line: 12 months

Recommendation: Services S5 and S14

(2) Since 1991, the Special Programs of National Significance (SPNS) have worked in the

development of innovative service delivery models, many of them in communities of color. As

these programs are completed, HRSA will provide information and findings on programs to

CBOs and ASOs.

Agency: HRSA

Time line: 12 months

Recommendation: Services S5 and S14

(3) The HRSA Bureau of Primary Health Care (BPHC), Division of Migrant and Community Health,

provides primary care and support services to migrant communities. BPHC has developed

materials that address standards of care for migrant populations, including migrant worker

women. HRSA will take proactive steps to disseminate this information to CBOs and ASOs

providing services in migrant communities.

Agency: HRSA

Time line: 12 months

Recommendation: Services S5 and S14

(4) HRSA and other DHHS OpDivs will examine the demand for information on HIV treatment in

languages other than English. To the extent that there is an identifiable need for these materials,

HRSA will develop necessary information on treatment in those languages for which there is

demand.

Agency: DHHS

Collaborating agency: CDC, HRSA, NIH and SAMHSA

Time line: 12 months

Recommendation: Services S27

(5) In order to ascertain the demand for information and materials on treatment in languages other

than English, CDC will examine the utilization of the AIDS Treatment Information System

(ATIS). This utilization information will not only be used in determining what materials are

needed in other languages but will also be shared with minority CBOs and ASOs.

Agency: CDC

Collaborating agency: OMH

Time line: 6 months

Recommendation: Services S27

I. Grant Administration

(1) In order to have the most qualified people of color participating in grant review committees, there

is a need to collaborate with colleges and universities that have historically served racial and

ethnic communities. While OMH has worked with many of these institutions, it has not

developed linkages with institutions of higher learning that enroll large numbers of Asians and
Action Steps - Page 23

Pacific Islanders. OMH will take steps to establish these linkages so as to increase the number of

Asians and Pacific Islanders that are available to participants on grant review committees.

Agency: OMH

Time line: 12 months

Recommendation: Services S19

(2) DHHS will expand their grants reviewer pool to include greater participation of racial and ethnic

communities.

Agency: DHHS

Collaborating agency: CDC, HRSA, NIH and SAMHSA

Time line: 12 months

Recommendation: Services S19
Page 24 - Action Steps

IV Policy Development

A. National Minority HIV Plan

(1) HHS OpDivs will seek ways of pooling available funds to assist the Office of Minority Health

with the implementation and follow-up necessary for the National Minority HIV Plan.

Agency: HHS

Time line: 12 months

Recommendation: Prevention P20

B. Executive Orders

(1) In order to make the process for the development of Executive Orders more inclusive, OMH will

explore ways of working with members of the National Minority HIV Working Group in this

area.

 Agency: OMH

Time line: 12 months

Recommendation: Services S19

V Pending Issues

The following issue was discussed at the April meeting but no specific action steps were put

forth due to time limitations.

A. Surveillance and Epidemiology

(1) CDC will make available information regarding policies behind data collection and how input can

be provided in the area of data collection.

Agency: CDC

Collaborating Agency: NIH

Recommendation: P15
Appendix A - Page 25

APPENDIX A – RECOMMENDATIONS

The following recommendations were used as a basis for discussion and development of the action

steps contained in this report. Not all recommendations listed were discussed in detail during the

Working Group's meeting, and thus not all have specific action steps to address them. The

recommendations are included in this report for historical purposes and to allow the Department to

gain a better understanding of the unique needs and concerns of racial and ethnic communities.

PREVENTION

Prevention Recommendation: P1

Fund community-based organizations (CBOs) and AIDS service organizations (ASOs)

specifically to develop programs and materials on links between injecting drugs, noninjection drugs (including alcohol) and HIV/AIDS.

Related Action Steps: Prevention B(3), B(4), B(5), D(2)

Prevention Recommendation: P2

Develop and support more HIV prevention programs targeting heterosexuals.

Prevention Recommendation: P3

CDC should provide TA to CBOs on how to articulate and document the effectiveness of

their prevention strategies and interventions. CDC would facilitate the dissemination of

that information.

Related Action Steps: Prevention F(1)

Prevention Recommendation: P4

CDC should expand, with the collaboration of racial and ethnic groups, its national

multilingual AIDS hotline, to include community service providers.

Prevention Recommendation: P5

The CDC and territorial, state and local health departments should modify current data

collection methods and surveillance systems, to disaggregate racial and ethnic communities

by race, ethnicity, language, national origin and tribal affiliation; report by oversampling

where necessary; and conduct studies.
Page 26 – Appendix A

Prevention Recommendation: P6

CDC should increase funding for comprehensive HIV education for in-school and out-ofschool youth, including minority gay, lesbian, bisexual, transgender and questioning youth.

Related Action Steps: Prevention D(3), F(1)

Prevention Recommendation: P7

CDC and SAMHSA should fund culturally, linguistically and gender appropriate needle

exchange programs that target communities of color.

Prevention Recommendation: P8

CDC should increase funding for HIV prevention interventions, TA, training and capacity

building specifically targeting lesbians, gay men, bisexuals and men who have sex with

men in rural communities.

Prevention Recommendation: P9

Surrogate markers, such as sexually transmitted disease (STD) and unplanned pregnancy

rates, should be used to estimate HIV risk and to evaluate the effectiveness of risk reduction

in prevention programs.

Related Action Steps: Prevention B(2)

Prevention Recommendation: P10

CDC should increase funding for HIV prevention interventions, TA, training and capacity

building specifically targeting gay, bisexual, transgender and other men who have sex with

men in all racial and ethnic communities. These programs should include racial, ethnic,

sexual and gender identity. Program funding should reflect increases in rates, prevalence

and morbidity in these groups.

Prevention Recommendation: P11

All requests for proposals (RFPs) should ensure that the cultural and linguistic needs of the

target population are addressed in the prevention message. Inclusion of the target

population in the design, implementation and evaluation is essential. Targeted messages are

the most effective means of outreach.

Related Action Steps: Prevention C(1), C(2)
Appendix A - Page 27

Prevention Recommendation: P12

Increase funding to support the use of peers and mentors to deliver prevention activities, as

specified by the CBOs or ASOs.

Prevention Recommendation: P13

Require funded CBOs, ASOs and state and local health departments to provide rapid access

to confidential counseling and testing as a part of their comprehensive HIV activities.

Prevention Recommendation: P14

CDC should convene a panel of planning group members to evaluate the participation of

communities of color in the planning process, based on the latest year's reported AIDS

cases. Participation should be in the proportion that the epidemic has impacted on their

particular racial and ethnic community and population as defined by risk factor.

Related Action Steps: Prevention E(1), E(2), E(3)

Prevention Recommendation: P15

CDC should require that states continue to offer anonymous HIV testing. Partner

notification would be carried out on a voluntary basis with the consent of the individual.

Related Action Steps: Pending A(1)

Prevention Recommendation: P16

The Secretary of Health and Human Services should review the restrictions and federal

rules regarding needle exchange programs and allow federal funds to support such

activities.

Prevention Recommendation: P17

CDC should mandate state and local health departments to provide training to Community

Planning Group members in support of parity, inclusion and representation.

Related Action Steps: Prevention E(1), E(2), E(3)
Page 28 – Appendix A

Prevention Recommendation: P18

CDC should release a public service announcement specifically targeting minority gay,

lesbian, bisexual, transgender, questioning and asking youth.

Prevention Recommendation: P19

SAMHSA should release a program announcement specifically targeting minority youth

that would educate about the link between HIV transmission and underage alcohol use.

Prevention Recommendation: P20

Develop a national agenda focusing on prevention of HIV in people of color, to include: 1)

identifying effective programs for each community of color; 2) disseminating information

through a comprehensive plan; and 3) setting funding priorities for prevention and research.

Related Action Steps: Prevention A(1), A(2), A(3), A(4), B(1), Policy Development A(1)
Appendix A - Page 29

RESEARCH

Research Recommendation: R1

DHHS OpDivs should develop public information campaigns with various levels of

messages for racial and ethnic communities. The messages should include primary and

secondary prevention information and must be tailored to the specific communities and risk

factors. Evaluation methodologies should be developed to measure the effectiveness of

these campaigns.

Research Recommendation: R2

NIH should continue and expand efforts to find more effective women-controlled

prevention devices, contraceptives and microbicides, and provide information on these to

communities and individuals in terms that can be easily understood. The efforts should

include incentives to industry for the development of new products, in particular those that

would benefit people of color.

Research Recommendation: R3

The CDC should fund a multi-site, multi-year longitudinal study of epidemiological trends

in HIV and AIDS incidence and prevalence among all racial and ethnic communities and

populations.

Related Recommendations: Research A(3), B(3), C(1) , C(2), C(3)

Research Recommendation: R4

NIH should actively recruit and retain members of racial and ethnic communities -- in

particular women, youth and transgenders -- for existing and new clinical treatment trials

and vaccine trials. In order to facilitate this, NIH should develop a centralized database

containing demographic information and provide resources to address transportation,

interpretation and translation needs. In particular, the use of community-based research

sites will assist with this effort. In populations where there is under representation, over

sampling will be necessary. NIH should look for new and improved ways of addressing

increased recruitment and retention needs among racial and ethnic communities.

Related Action Steps: Research E(1), I(1)

Research Recommendation: R5

NIH should facilitate the distribution of research findings to participants in clinical trials.

To ensure that the findings of research reach the communities and populations in need,
Page 30 – Appendix A

increased treatment education and materials should be made available in the languages of

the populations that require them. Materials required for individuals to participate in

research should be provided in the language of the person included in the research. Among

the documents that should be made available are: informed consent information and forms,

medical alerts, treatment findings and guidelines.

Research Recommendation: R6

NIH should fund multi-city HIV clinical treatment and vaccine trials in all racial and ethnic

communities and populations according to risk, with a special focus on people living with

HIV and AIDS. Among the options are short-term single community research and longterm infrastructure development in health services research models. The areas to be

researched include: clinical trials, vaccines, service delivery and cost utilization.

Related Action Steps: Research C(4), E(2), F(1),

Research Recommendation: R7

CDC, HRSA and NIH should promote and fund culturally appropriate innovative research

methodologies -- including new recruiting methods and survey methodologies -- to

effectively study racial and ethnic communities and risk populations. NIH should continue

research on alternative and complimentary medicines in racial and ethnic communities.

Related Action Steps: Research G(1), H(1)

Research Recommendation: R8

NIH should encourage the development of public and private partnerships for research of

women-controlled prevention devices. NIH should provide information on progress in the

use of funding the Secretary pledged for this purpose: $100 Million.

Research Recommendation: R9

Programs targeting people of color should incorporate cultural norms in the methodology

design, and include these norms in the theory, methods, sampling, recruitment and retention

practices. In those instances where there is undercounting of a particular population,

oversampling should be used to obtain adequate representation. Panels should make

funding decisions on these programs to reflect the racial and ethnic background of the

populations being targeted.

Related Action Steps: Research A(1), A(2), E(5), I(2), I(3), J(1)
Appendix A - Page 31

Research Recommendation: R10

Targeted committees must establish research guidelines for their community. These

research guidelines must contain, at a minimum: 1) an observational database containing

information on current and past participants in clinical trials; 2) increased training and

funding opportunities for minority researchers; and, 3) increased interagency and

interdepartmental coordination of research efforts.

In the case of the American Indians/Alaska Native community, two separate processes

should be implemented to address the research needs of the community:

1. Urban Indians should work with HRSA and the SPNS program to obtain necessary

funding; and

2. IHS should work with the Tribal Consultation Process and the various tribes.
Page 32 – Appendix A

SERVICES

Services Recommendation: S1

Federal and state agencies should provide incarcerated populations with lubricant, condoms

and dental dams upon request. HIV prevention and education materials, substance abuse

treatment, mental health and primary health care and other services should also be available.

Services Recommendation: S2

Ensure the representation and participation of all racial and ethnic groups and individuals

living with HIV and AIDS in the development, implementation and evaluation of HIV and

AIDS programs. Federal agencies should include these groups in the process for the

development of RFPs.

Services Recommendation: S3

DHHS, the Department of Housing and Urban Development (HUD), territorial, state and

local health departments should fund interpretation and translation services for HIV and

AIDS prevention and care services that are appropriate culturally and linguistically, in all

communities where English is not the primary language of choice.

Services Recommendation: S4

CDC and HRSA should create capacity for community-based service delivery and

infrastructure within community organizations of color. TA and the flexibility to contract

with TA consultants (nationally and local) should be made available to CBOs and ASOs.

Services Recommendation: S5

HRSA, NIH and territorial, state and local health departments should ensure that all persons

living with HIV and AIDS have access to newly developed treatments and drug therapies,

including persons with insurance, the under-insured and the uninsured, regardless of

immigration status.

Related Action Steps: Services D(3), F(1), G(1), G(2), H(1), H(2), H(3)

Services Recommendation: S6

CDC, HRSA, NIH and HUD should fund comprehensive HIV and AIDS health and social

services and resources for women, including pre-and post-test counseling, HIV education
Appendix A - Page 33

and prevention, emotional and practical support, harm reduction, substance abuse treatment,

gynecological care and family counseling.

Services Recommendation: S7

CDC, territorial, state and local health departments should include a female-to-female

transmission category in all HIV and AIDS surveillance data collection mechanisms.

Services Recommendation: S8

HRSA and the Federal Bureau of Prisons (BoP) should support ongoing education and

training of HIV, health and social service providers regarding issues of gender and sex roles

and gender discrimination.

Services Recommendation: S9

CDC and HRSA should fund comprehensive HIV and AIDS health and social services for

transgenders of all racial and ethnic groups. Transgenders should participate and be

represented in the development, implementation and evaluation of HIV programs.

Services Recommendation: S10

DHHS, territorial, state and local health departments should ensure that-comprehensive

prenatal care is available to all pregnant women, regardless of health status, health

insurance, income or immigration status, to ensure access to HIV medical standards of care.

Services Recommendation: S11

DHHS should continue to support voluntary, culturally and linguistically appropriate HIV

testing of pregnant women and access to appropriate HIV treatment and services.

Services Recommendation: S12

SAMHSA should increase funds for culturally and linguistically appropriate substance

abuse prevention and treatment services to meet the needs of affected individuals and their

families. Services should include harm reduction and needle exchange programs.
Page 34 – Appendix A

Services Recommendation: S13

HRSA should allow and encourage the use of Ryan White CARE Act funding for the

development of secondary prevention programs that are culturally and linguistically

appropriate in racial and ethnic communities.

Services Recommendation: S14

HRSA should address those unique cultural, social and economic factors for new

immigrants that may create barriers to access to care.

Related Action Steps: Services D(2), D(3), F(1), G(2), H(1), H(2), H(3)

Services Recommendation: S15

There is a need for better and more accurate data on health care indicators of American

Indian/Alaska Natives, Alaska Natives and Pacific Islanders. This can be accomplished by

closer work with service providers, consumers, epidemiologists and providers in Native

communities.

Services Recommendation: S16

The various tribes must be allowed to participate in the Ryan White CARE Act planning

bodies (consortia and councils) at the state level. Historically, the tribes have been

excluded on a belief that all HIV and AIDS services are covered by IHS.

Services Recommendation: S17

HRSA and the Special Project of National Significance (SPNS) should review the

mechanism within Title V of the Ryan White CARE Act in order to provide ongoing

funding for American Indian/Alaska Native HIV programs.

Services Recommendation: S18

Federal agencies should explore alternative funding mechanisms and criteria for directly

funding minority CBOs and ASOs, so that dollars are set aside for maintenance of these

organizations.

Related Action Steps: Services A(1), A(2), A(3), B(1), C(1), C(2), D(1)
Appendix A - Page 35

Services Recommendation: S19

Federal agencies should demonstrate that minority CBOs, ASOs and individuals infected

with HIV and AIDS are included in the composition of grant review committees. The

review committee composition should reflect the epidemic.

Related Action Steps: Services I(1), I(2), Policy Development B(1)

Services Recommendation: S20

The needs of American Indians/Alaska Natives must be prioritized as components of

planned services in the CARE Act and CDC prevention programs, even in those areas

where the sovereign tribes receive direct funding from the federal government.

Services Recommendation: S21

The special needs and situation of American Indians/Alaska Natives living in urban areas

must be addressed by HRSA through the SPNS program and IHS to ensure the accessibility

of needed services.

Services Recommendation: S22

HRSA should provide access to information on physicians who have been trained by the

AETCs.

Services Recommendation: S23

HRSA should audit state AIDS Drug Assistance Programs (ADAPs) to ensure access to

needed medical services.

Services Recommendation: S24

Provide training and education to health and social workers who provide services to clients

living with HIV and AIDS -- including prison personnel -- regarding mental health and

alcohol and other drug abuse treatment issues.

Services Recommendation: S25

Access to mental health services should be provided to all individuals living with HIV and

AIDS, including those in prisons.
Page 36 – Appendix A

Services Recommendation: S26

Federal agencies responsible for mental health services should not expect HRSA to address

all mental health problems for all HIV clients.

Services Recommendation: S27

HRSA should provide data on the extent of access and utilization by people of color of

current DHHS – recommended standards of care, and provide and implement a timeline on

how that percentage will increase to reflect the people of color utilization of care services

provided through the Ryan White CARE Act and Medicaid.

Related Action Steps: Services H(4), H(5)
Appendix A - Page 37

Other

Other Recommendation: O1

The Immigration and Naturalization Service (INS) to confer deferred status for immigrants

with AIDS.

Other Recommendation: O2

The Assistant Secretary for Health should conduct a monthly meeting in which the issues

and recommendations discussed here are addressed. The meetings should provide a forum

for the OpDivs to provide updates on progress made in implementation.
Page 38 – Appendix B

APPENDIX B - ACTION STEPS BY OPERATING DIVISION

I Agency for Health Care Policy and Research

Prevention: A(4), C(1), (2)

Research: F(1)

II Centers for Disease Control and Prevention

Prevention: A(1), (2), (3), (4), B(4), C(1), (2), D(1), (2), (3), E(1), (2), (3), F(1)

Research: A(1), (2), B(1), (2), (3), C(1), (2), (3), (4), E(2),(3), (4), H(1), I(2), (3)

Services: C(1), D(1), H(4), (5), I(2)

Pending Issues: A(1)

III Food and Drug Administration

Prevention: A(4), C(1), (2)

Research: D(3)

IV Health Resources and Services Administration

Prevention: A(4), C(1), (2)

Research: A(1), (2), E(3), (4), (5), H(1), I(2), (3)

Services: A(1), (2), (3), B(1), C(1), (2), D(1), (2), (3), E(2), (4), F(1), G(1), (2), H(1), (2),

(3), (4), I(2)

V Indian Health Service

Prevention: A(4), C(1), (2)

VI National Institutes of Health

Prevention: A(4), B(5), C(1), (2)

Research: A(1), (2), B(1), C(3), (4), D(1), D(2), D(4), E(1), (2), (3), (4), G(1), H(1), I(1),

(2), (3)

Services: H(4), I(2)

VII Substance Abuse and Mental Health Services Administration

Prevention: A(4), B(1), (2), (3), (4), C(1), (2), D(2), E(4)

Research: A(1), (2), (3), E(5), H(1), I(2), (3)

Services: D(2), E(1), (2), (3), (4), (5), H(4), I(2)

VIII Office of the Secretary/Office of Minority Health

Prevention: A(4), B(2), (3), (4), B(4), (5),C(1), (2), D(2), F(1)

Research: A(1), (2), E(5), I(2), (3), J(1)

Services: C(1), D(1), E(2), H(4), (5), I(1), (2)

Policy Development: A(1), B(1)
Appendix C - Page 39

APPENDIX C - GLOSSARY

ACRONYM TITLE

ACF Administration for Children and Families, Department of Health and Human

Services

ADAP AIDS Drug Assistance Program, an initiative under the CARE Act, administered

by the Health Resources and Services Administration

AETCs AIDS Educational Training Centers, a Health Resources and Services

Administration Initiative

AHCPR Agency for Health Care Policy and Research, Department of Health and Human

Services

AMR ADAP Monthly Report

ASO AIDS Service Organization

BIA Bureau of Indian Affairs, Department of the Interior

BoP Bureau of Prisons, Department of Justice

CAPTs Centers for the Application of Prevention Technologies, a SAMHSA/CSAP

initiative

CARE Act The Ryan White Comprehensive AIDS Resources Emergency Act, provides

funding for HIV services through four Titles

CBO Community Based Organization

CDC Centers for Disease Control and Prevention, Department of Health and Human

Services

CHSTP Center for HIV/STD/TB Prevention, Centers for Disease Control and Prevention

CMHS Center for Mental Health Services, Substance Abuse and Mental Health Services

Administration

Cooperative The funding mechanism for providing funding to state and other nonAgreement federal entities

CPG Community Planning Group, the body created to develop HIV prevention

priorities at the state/local level
Page 40 – Appendix C

CSAP Center for Substance Abuse Prevention, Substance Abuse and Mental Health

Services Administration

CSAT Center for Substance Abuse Treatment, Substance Abuse and Mental Health

Services Administration

CSTE Council of State and Territorial Epidemiologists

DASH Division of Adolescent and School Health, Center for Chronic Disease

Prevention and Health Promotion, Centers for Disease Control and Prevention

DHAP Division of HIV/AIDS Prevention, Center for HIV/STD/TB Prevention, Centers

for Disease Control and Prevention

DHHS U.S. Department of Health and Human Services

DOJ Department of Justice

DSS Division of Support Services, HIV/AIDS Bureau, Health Resources and

Services Administration

FDA Food and Drug Administration, Department of Health and Human Services

FY Fiscal Year, generally the federal fiscal year, October 1 – September 30,

designated by the calendar year in which the fiscal year begins (i.e., FY98 began

on October 1, 1998)

HAB HIV/AIDS Bureau, Health Resources and Services Administration

HARS HIV/AIDS Reporting System, a Centers for Disease Control initiative

HCFA Health Care Financing Administration, Department of Health and Human

Services

HOPWA Housing Opportunities for People with AIDS, a HUD initiative

HRSA Health Resources and Services Administration, Department of Health and

Human Services

HUD Department of Housing and Urban Development

IDU Injecting Drug User

IHS Indian Health Service, Department of Health and Human Services

IND Investigational New Drug applications

INS Immigration and Naturalization Service, Department of Justice

KDA Knowledge Development Application, a SAMHSA Initiative
Appendix C - Page 41

NAH National AIDS Hotline, a Centers for Disease Control and Prevention initiative

NASTAD National Alliance of State and Territorial AIDS Directors

NDA New Drug Application

NIAAA National Institute on Alcohol Abuse and Alcoholism, National Institutes of

Health

NIDA National Institute on Drug Abuse, National Institutes of Health

NIH National Institutes of Health, Department of Health and Human Services

NIMH National Institute on Mental Health, National Institutes of Health

NRMO National/Regional Minority Organization, a Centers for Disease Control and

Prevention initiative

ONAP Office of National AIDS Policy, Executive Office of the President

OpDiv Operating Division, a term used to define federal agencies that carry out

program operations

OSE Office of Service Evaluation, Health Resources and Services Administration

SAMHSA Substance Abuse and Mental Health Services Administration, Department of

Health and Human Services

SAPT Substance Abuse Prevention and Treatment Block Grant, administered by

CSAT/SAMHSA

SPNS Special Projects of National Significance, an initiative under the CARE Act,

administered by the Health Resources and Services Administration

TA Technical Assistance

YSAPI Youth Substance Abuse Prevention Initiative, a DHHS Secretarial Initiative