Fetal Alcohol Syndrome 

Efforts Underway to Reduce Rates 

By Lisa Troshinksy


Closing the Gap, Maternal Health • January/February 2004


For more than 30 years, doctors, nurses and other health care 

providers have worked to alert women about the dangers of 

drinking during pregnancy. Yet, prenatal exposure to alcohol is 

one of the leading causes of mental retardation and preventable birth 

defects today. 

Fetal alcohol syndrome (FAS), a medical term first identified in 

1973, describes a lifelong, physically and mentally disabling condition in children 

whose mothers 

FAS Center for Excellence, a new project started by the Department 

of Health and Human Services’ Substance Abuse and Mental Health 

Services Administration (SAMHSA). 

“We have a mandate from Congress to identify exemplary systems for comprehensive prevention, treatment and appropriate intervention, and we found out there aren’t any. We don’t know any safe 

level of alcohol consumption for pregnancy, yet, medical doctors don’t 

routinely tell 

women not to 

drank alcohol “...We don’t know any safe level of alcohol consumption for pregnancy...” drink during pregwhile pregnant. nancy and we 

FAS is character- Callie Gass, Project Director, FAS Center for Excellence don’t have interized by (1) abnormal facial features, (2) growth deficiencies, and (3) central nervous 

system problems. People with FAS may have problems with learning, 

memory, attention span, communication, vision and/or hearing. These 

problems often lead to difficulties in school and problems getting 

along with others. 

Those Most Affected 

FAS affects one in every 500 live births in the United States, the 

equivalent of 8,000 to 12,000 cases each year. And, the disease 

disproportionately affects American Indian communities where the 

incidence of alcoholism is the highest. 

The National Organization on Fetal Alcohol Syndrome (NOFAS) 

says FAS affects American Indian and Alaska Native communities at 

least 10 times more frequently than it does the broader population. 

FAS rates vary between different American Indian tribes, but appear 

to be worse for those located in the southwestern part of the United 

States. 

Though there are no exact statistics, according to a Centers for 

Disease Control and Prevention (CDC) surveillance study conducted 

from 1995 to 1997 in four U.S. states, the rate of FAS births for 

American Indian and Alaska Natives was 3.2 percent, compared with 

the rate of 0.2 percent for Whites, and a rate of 0.4 percent for the 

general population. The second highest incidence rate was for African 

Americans, with a rate of 1.1 percent. 

FAS Not Confronted? Experts Differ 

Though FAS is an escalating health concern, related primarily to 

the rate of alcoholism increasing among women of childbearing ages, 

experts maintain that the disease has not been taken seriously by the 

medical community and that there are very few comprehensive programs that exist for its prevention and treatment. 

“There isn’t really good surveillance data on FAS anywhere in the 

United States,” said Callie Gass, project director for the 

vention programs 

for women who are drinking.” 

One of the main problems in fighting FAS is that it is easily 

misdiagnosed. Unless a person has the characteristic facial defects, the 

syndrome can be mistaken for attention deficit disorder, or just plain 

laziness or intentional “acting out.” A cultural stigma is another barrier 

to FAS identification and intervention, experts say. 

Dr. Kathy Masis, medical officer for behavioral health, Billings 

Area (Montana), Indian Health Service (IHS), contends that though 

stigma, embarrassment and resistance associated with FAS exists, there 

is less of a cultural barrier to facing the problem in American Indian 

communities. 

“IHS was a pioneer in discovering FAS in 1973,” Masis said. 

“Ascertainment within the American Indian community is better than 

in other communities; they don’t have the level of stigma. American 

Indians are already stigmatized just for being Indians, for living on a 

reservation. They don’t have the same need to look good for society. 

There is more of a willingness to talk about FAS and report it.” 

But Sharon Asetoyer, executive director of the American Indian 

Women’s Health Education Resource Center, located in South Dakota, says fighting FAS in American Indian communities has a long 

way to go. 

“Some communities have treatment centers, but they are few 

and far between,” Asetoyer said. “The government spends millions on 

treatment services, but fails to provide after-care services. Without 

those, women go back into the same environments and start drinking 

again.” 

“There is a disparity of funding for the American Indian community because we are tucked out here in rural communities and 

reservations, and we haven’t had the voting power in the past,” 

Asetoyer said. “Luckily, that is starting to change in South Dakota, 

and now there is a consortium that includes Minnesota, Nebraska, 

Oklahoma, Arizona, New Mexico, Montana and Idaho, that is dealing with the problem.” 

continued on page 2>>>> 

Office of Minority Health Resource Center 1 U.S. Department of Health and Human Services 
Fetal Alcohol Syndrome 

Efforts Underway to Reduce Rates 

By Lisa Troshinksy


Closing the Gap, Maternal Health • January/February 2004


Some Hope—More Money, More Initiatives 

Efforts by government and private organizations to prevent, identify and treat FAS 

in American Indian communities are starting 

to gather steam, say FAS experts. IHS, 

SAMHSA, CDC, the National Institutes of 

Health, and NOFAS are among those that 

have received funding to fight the disease. 

“In the last two years, activity around 

the country toward reducing FAS has been 

phenomenal,” Masis said. “There is more 

funding from CDC, IHS recently hired key 

people, and SAMHSA started the FAS Center for Excellence a few years ago.” 

“I think more attention has been put on 

fighting FAS in the American Indian communities because of Congressional support,” 

said Kathleen Mitchell, NOFAS program 

director and national spokesperson. 

One piece of significant legislation, the 

Children’s Health Act of 2000, requires the 

HHS Secretary to make awards to public, 

nonprofit and private organizations to establish up to four centers for excellence to study 

techniques to prevent FAS and alcohol-related birth defects. 

As a result of that legislation, for the 

purpose of combating FAS, SAMHSA was 

appropriated approximately $12 million for 

fiscal year (FY) 2001, $11 million for FY 

2002, $9.7 million in FY 2003, and $10 

million is expected for FY 2004, Stone said. 

“Before these appropriations, SAMHSA 

was getting nothing for FAS,” Stone said. 

“There have been some funding increases within CDC for state-based grants 

for FAS awareness and training,” said Candice 

Jalonen, a health scientist at the CDC National Center on Birth Defects and Developmental Disabilities. 

“For FY 2003, CDC received $12.4 

million, and for FY 2004, $12.5 million was 

appropriated for FAS prevention. CDC also 

heads up a federal FAS Task Force, and contracts non-profits and community organizations to conduct FAS prevention.” 

“NOFAS also has grown due to increased investment for this issue over the last 

three-year-period,” said NOFAS executive 

director Tom Donaldson. 

Projects are Beginning 

“The SAMHSA FAS Center for Excellence is still in its research stage,” said center 

project director Callie Gass. “We’re going 

around the country conducting town hall 

meetings to identify what the American Indian communities need regarding FAS, particularly in the southwest. We’re developing 

a strategic plan—trying to figure out how to 

get around lack of resources in those areas, 

and discovering which best practices and 

models are required.” 

Gass went on to say, “We want to increase recognition of women at risk, and after someone is diagnosed with FAS, we want 

to encourage early intervention, which could 

include occupational, speech, and behavior 

therapy.” 

NOFAS recently received $175,000 

from the Weinburg Foundation for a threeyear Indian youth project to fight FAS, and 

$150,000 from the CDC for a Cherokee 

Nation project in Oklahoma, Donaldson said. 

“The goal of the Cherokee Nation 

project is to conduct prevention and intervention work,” said Mitchell. “The Cherokee Nation will form an advisory committee 

that will drive our activities, and we will develop a public awareness campaign to serve 

women and children and develop workshops 

for health clinics and addiction treatment 

centers.” 

NOFAS just completed a similar threeyear, public awareness campaign in Washington, D.C., funded by the National Institutes of Health that targeted African Americans. NOFAS also is continuing to increase 

FAS awareness in the medical community. 

“We’ve had an FAS curriculum at several medical institutions, including Northwestern and Georgetown, for more than 13 

years, and we’re working with the CDC to 

develop a general FAS curriculum for medical students and practitioners,” Mitchell concluded. 

For more information on the Substance 

Abuse and Mental Health Services Administration Fetal Alcohol Spectrum Disorders Center for Excellence, go to http:// 

www.fascenter.samhsa.gov/

Number and Prevalence Rate* of Fetal Alcohol Syndrome Cases • Fetal Alcohol Syndrome Surveillance Network, 1995-1997 

Race/ethnicity 

White, non-Hispanic 

Black 

Hispanic 

Asian/Pacific Islander 

AI/AN++ 

Other/Unknown 

Total

Alaska 

Births 

19,007 

1,341 

1,287 

1,493 

7,117 

39 

30,284

Cases 

5 

0 

0 

0 

40 

0 

45

Rate 

.3 

-

-

-

5.6 

0 

1.5

Arizona 

Births 

114,851 

7,054 

80,626 

4,371 

15,685 

456 

223,043

Cases 

15 

4 

16 

1 

39 

0 

75

Rate 

.1 

** 

.2 

** 

2.5 

-

.3

Colorado 

Births 

63,653 

5,508 

21,579 

2,556 

1,744 

96 

95,136

Cases 

11 

5 

8 

0 

1 

0 

25

Rate 

.2 

.9 

.4 

-

** 

-

.3

Total 

Births 

266,443 

27,358 

107,127 

10,113 

25,173 

1,038 

437,252

Cases 

49 

30 

24 

1 

81 

0 

185

Rate 

.2 

1.1 

.2 

** 

3.2 

-

.4

New York 

Births 

68,932 

13,455 

3,635 

1,693 

627 

447 

88,789

Cases 

18 

21 

0 

0 

1 

0 

40

Rate 

.3 

1.6 

-

-

** 

-

.4

* Per 1,000 population/** Rates were calculated when the number of cases was <5/ ++American Indian/Alaska Native 

Source: Morbidity and Mortality Weekly Report (MMWR) May 24, 2002 / 51(20);433-5 

Office of Minority Health Resource Center 2 U.S. Department of Health and Human Services