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Women and Children ’ s HIV Protection Act of 2003

Women and Children ’ s HIV Protection Act of 2003. Stephanie G. Jane P. Rena S. Susie T. Policy Question HR 2049 (Ackerman).

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Women and Children ’ s HIV Protection Act of 2003

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  1. Women and Children’s HIV Protection Act of 2003 Stephanie G. Jane P. Rena S. Susie T.

  2. Policy Question HR 2049 (Ackerman) • Should the Public Health Service Act be amended to include voluntary testing of pregnant women and mandatory testing of all newborn infants for the human immunodeficiency virus (HIV) in the US?

  3. Public Health Service Act • Ryan White CARE Act Amendment • Subpart II, part B of Title XXVI sec. 2625 www.thomas.loc.gov

  4. Roots of the Women and Children’s HIV Protection Act • CDC anonymously tests newborns for HIV • No disclosure of results to mothers • Congressman Gary Ackerman (D- Queens/Long Island) introduces ‘Baby AIDS’ legislation (1995) www.house.gov/ackerman/press/babyaids.htm

  5. Legislative History of ‘Baby AIDS’ • Ackerman first proposes Women and Children’s HIV Protection Act in 1995 • HR 4426 May 11, 2000 • HR 4644 May 2, 2002 • HR 2049 May 9, 2003

  6. Claims of Harm • ~ 7,000 HIV+ women give birth in the US annually (CDC) • ~15% of HIV+ women get no prenatal care (IOM) • >33% HIV infections in newborns preventable with testing www.thomas.loc.gov

  7. Claims of Harm (Cont.) • Perinatal transmission: leading cause of pediatric HIV infections • Near elimination of perinatal HIV transmission possible • Post-partum treatment reduces infection risk in exposed babies www.mnh.jhpiego.org/best/mtcaids.asp

  8. Preventing Perinatal Transmission www.doh.state.fl.us/disease_ctrl/aids/ trends/workshop/perinatal.pdf

  9. Data - CDC HIV/AIDS Surveillance Report (Dec 2001) • Cumulative HIV/AIDS cases in the US www.apla.org

  10. Data - LADHS: Quarterly Surveillance Summary (1/15/03) • Cumulative Pediatric AIDS Cases in LA County by Race/Ethnicity www.apla.org

  11. Data - LADHS: Quarterly Surveillance Summary (1/15/03) • LA County Dept. of Health Services Pediatric Cases of HIV/AIDS • Children under age 13 • 241 pediatric cases since 1981 • 44 living cases • mortality rate: 79% • 70% perinatally transmitted • 29% transfusion / hemophilia • 1% undetermined. www.apla.org

  12. Data - Joint UN Programme on HIV/AIDS (December 2002) • 2002 Global data (children <15 years) • Newly infected: 800,000 • Living with HIV/AIDS: 3.2 million • Deaths 610,000 • Total deaths since beginning of epidemic: 5.4 million www.apla.org

  13. Data - UNAIDS, World Health Org. (December 2003) • ~14,000 new cases per diem in 2003 • UN report indicates 2.1 – 2.9 million HIV+ children worldwide www.apla.org

  14. Contents of HR 2049 • To amend the Public Health Service Act • Requires HIV counseling for pregnant women • Mandates testing of newborns of untested mothers • Proposed budget: $82,875,000 www.thomas.loc.gov

  15. HR 2049 Analysis • Women tested with informed consent • Reduces AIDS treatment costs in long-run • Loophole • Great bill, but low priority issue

  16. Similar or Related Bills • NY Bill/Law (Ackerman 1997) • CA AB 1676 (Dutra 2003) • FL HR 4644 (Weldon 2002), S144 (2004) • CT 1252 (Thompson et al 1999)

  17. Impact in NY • Perinatal HIV transmission dropped 25% (1997) to 3.5% (current) • 99% of HIV+ women + children linked to care (WOW!!) • Similar results expected nationwide www.thomas.loc.gov

  18. Key Stakeholders • Expectant mothers • Newborn infants • Society at large • Individual $tates • no fed grant $$$ for states that fail to comply

  19. Proponents- Political • Rep. Gary Ackerman (NY) • Rep. Dave Weldon (FL) • Rep. Martin Frost (TX) • Rep. Michael McNulty (NY) • Rep. Gene Taylor (MS) • Rep. Bennie Thompson (MS) • Rep. Albert Wynn (MD) • Rep. Maurice Hinchey (NY) • Rep. Charles Rangel (NY) • Rep. Lee Terry (NE)

  20. Proponents- Organizational • Center for Disease Control • Institute of Medicine • American Medical Association • AIDS Project Los Angeles • AIDS Healthcare Foundation • Children’s AIDS Fund • Medical Institute for Sexual Health and Beyond AIDS

  21. Interviews • Jordan Goldes, Press Secretary for Congressman Gary Ackerman (NY) • History of Ackerman interest • Early opposition encountered • Evolution of bill over time • Write local congressperson to support Ackerman's proposal • “There is no formal opposition that I am aware of with the Federal bill.”

  22. Interviews • Craig Stevens,Press Secretary for Congressman David Weldon of Florida (Proponent) • AIDS awareness + prevention top priority • Strives to ensure that bill passes in HOR • As an MD, aware of bill’s importance

  23. Interviews • Jessie Grudegary, AHF CA State Lobbyist • AHF would never support "mandatory testing” • OK with universal standard of care: inform mothers/test willingly • No child should be born HIV + • Researching into Federal Bill

  24. Interviews (Cont.) • Rosa Peña, Bilingual Case Manager, AIDS Project LA (Proponent) • Bill would increase likelihood of early Tx • APLA supports bill • “Wouldn’t you want to be aware of your status, if you knew that you could have an impact on your babies health?”

  25. Interview Denial • AIDS Legal Referral Panel • Exec. Director Bill Hirsh unable to address questions regarding bill • Noteworthy: national org. uninformed or unwilling to take a stance

  26. Opponents • NO organized opposition to federal bill • Possible opponents: • groups opposing government intrusion into private lives • groups against federal control on issues traditionally dealt via state/local government

  27. Opponents (Cont.) • Opponents to NY bill • HIV Law Project (Reproductive Rights Program) • Chris Cynn, Coordinator for the Reproductive Rights Program • BODY POSITIVE MAGAZINE article (Jan. 1999) oppose NY mandatory testing • “Programs such as New York’s are coercive and displace prevention efforts for women.”

  28. Opponents (Cont.) • Center for Women Policy Studies • Leslie Wolfe, President of Center for Women Policy Studies • (THE FEDERALIST) article against bill (www.thirteen.org/federalist/opinion-hiv.html) • “Grave threat to women’s right to privacy and to their reproductive rights.”

  29. Opponents (Cont.) • Op/ed in New York Times (5/15/98, p. A28) • “Some New York state physicians complain that reporting of the test results have been significantly delayed beyond the 72-hour notification deadline, because of lab delays or the result of hospital actions.”

  30. Recent Efforts • Not likely to reach a vote in this session of Congress • Anticipate strong push in January when Congress resumes

  31. Recommendations • What needs to be done: • Push issue into prominence • More analysis of cost issues, lower costs if possible • Promote awareness, lower barriers to care • Clarify issues of confidentiality versus anonymity

  32. Policy Recommendation • YES, we recommend this federal bill pass in its current form!

  33. QUESTIONS

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