National Organization on Fetal Alcohol Syndrome. Kathleen Tavenner Mitchell, MHS, LCADC AIA Conference October

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1 National Organization on Fetal Alcohol Syndrome Kathleen Tavenner Mitchell, MHS, LCADC AIA Conference October

2 Vision The vision of the National Organization on Fetal Alcohol Syndrome () is a global community free of alcohol-exposed pregnancies and a society supportive of individuals already living with Fetal Alcohol Spectrum Disorders (FASD).

3 Mission The National Organization on Fetal Alcohol Syndrome () is the leading voice and resource of the Fetal Alcohol Spectrum Disorders (FASD) community., the only international FASD non-profit organization, is committed to prevention, advocacy and support. effectively increases public awareness and mobilizes grassroots action in diverse communities and represents the interests of persons with FASD and their caregivers as the liaison to researchers and policymakers. By ensuring that FASD is broadly recognized as a developmental disability, strives to reduce the stigma and improve the quality of life for affected individuals and families.

4 What Does Provide? Public Awareness Media Outreach PSA Awareness Campaigns Youth Education Professional Education Curricula Provider training Advocacy Government Affairs Advisory Constituent Services Affiliate Network Birth Mom Network Support Groups Consultation Referral

5 Public Awareness through Media

6 40,000 New Cases of FASD Annually Estimated Cases Each Year HIV (91) Muscular Dystrophy (1,004) SIDS (2,295) Spina Bifida (2,813) Down Syndrome (5,024) FASD 0 10,000 20,000 30,000 40,000 50,000

7 Sudden Infant Death Syndrome A new federal study shows that pregnant women who drink five or more alcoholic drinks at one time during their first trimester of pregnancy are eight times more likely to have their infant die of Sudden Infant Death Syndrome. National Institutes of Health (December 2002)

8 Costs of FAS FAS costs US $5.4 billion in 2003 An FAS birth carries lifetime health costs of $860,000 although can be as high as $4.2 million Including quality of life, FAS prevention may be cost effective at up to $850,000 per child 1 in 100 births in US will have effects from exposure to alcohol

9 Substance Use in Pregnancy Overall rates of alcohol use among pregnant women have declined since But rates of frequent and binge drinking remain at high levels. More than 130,000 pregnant women per year in the US consume alcohol at risk levels. 1 in 30 women who know they are pregnant reports risk drinking 1 in 7 women of childbearing age engage in "risk drinking Birth defects associated with alcohol exposure can occur before a woman knows she is pregnant Nearly 50% pregnancies are unplanned

10 Preventing FASD: Have We Made Any Progress?

11 2004 Sponsors a FASD Terminology Summit Fetal Alcohol Spectrum Disorders (FASD) is an umbrella term describing the range of effects that can occur in an individual whose mother drank alcohol during pregnancy. These effects may include physical, mental, behavioral, and/or learning disabilities with possible lifelong implications. The term FASD is not intended for use as a clinical diagnosis.

12 2005 Surgeon General s Recommendations: Women who are pregnant should not drink. A woman who has already consumed alcohol during pregnancy should stop to avoid further risks. Women who are at risk for or are trying to become pregnant should not consume alcohol. Health professionals should work with all women of child bearing age to reduce risk.

13 8 States with FASD Task Forces California Minnesota Connecticut New Jersey Washington South Dakota Michigan Maryland

14 FASD State Coordinators 14 States and 1 Tribe Navajo Nation Alaska Arizona Colorado Kansas Maine Michigan Misissippi New Mexico North Carolina Texas Wisconsin Florida South Dakota New Jersey

15 Affiliates Affiliates -SD SD -AK AK -MN/MOFAS MN/MOFAS -OR/FASCETS OR/FASCETS -WA WA -CT CT -CA/CALFAS CA/CALFAS -UK UK 2006: 2006: -IL IL -CO CO -NY NY -TN TN -UT UT -NC NC -Africa Africa -New Zealand New Zealand

16 Point of Sale Warnings 19 States (and the District of Columbia) have laws requiring warnings to be posted at the point of sale about the dangers of drinking alcohol during pregnancy (AK, AZ, CA, DC, DE, GA, IL, KY, MN, MO, NE, NJ, NM, NY, OR, SD, TN, WA, WV)

17 International FASD Progress 2004: 2004-United Kingdom: Thanks to the work of -UK Lord Mitchell addressed the House of Lords and sparked a 2 hour debate about FASD and its impact on the citizens in the UK France initiated alcohol warning labels on alcohol beverage containers Poland includes warning labels on alcoholic beverages.

18 What about our healthcare providers and systems?

19 Nettleman 2002 Research on Medical Textbooks Only 17% of obstetrical textbooks published over the last 4 decades consistently recommend that expectant mothers abstain from alcohol consumption 17% reported it was permissible for pregnant women to drink 36% provided conflicting statements 23% presented literature on FAS with no recommendation 6% had no mention of FAS

20 2003 Survey of Medical and Nursing Schools surveyed 219 medical schools and nursing programs across the United States The survey attempted to gather information on whether or not FAS is covered as part of the curriculum Investigation areas the format in which is FAS covered in what department does FAS fall when FAS is covered whether FAS falls within a required course

21 2003 Survey Key findings Nearly all of the programs that responded reported that FAS was covered in their curriculum The most common format by which the coursework is presented was through a brief mention within a lecture (non-comprehensive reference to the topic ) A select few programs reported offering comprehensive coursework on FAS, in an elective format only, reaching a small amount of students

22 32 Years Later: Families Continue to Report that Physicians are still not Identifying FASD

23 Some progress has been made, but FASD prevention has a long way to go!