Women and Children’s HIV Protection Act of 2003

1
Women and Childrens 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 Childrens 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
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Legislative History of Baby AIDS

• Ackerman first proposes Women and Childrens HIV
  Protection Act in 1995
• HR 4426 May 11, 2000
• HR 4644 May 2, 2002
• HR 2049 May 9, 2003

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Claims of Harm

• 7,000 HIV women give birth in the US annually
  (CDC)
• 15 of HIV women get no prenatal care (IOM)
• gt33 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
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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
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Data - Joint UN Programme on HIV/AIDS (December
2002)

• 2002 Global data (children lt15 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
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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
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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

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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)

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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
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Key Stakeholders

• Expectant mothers
• Newborn infants
• Society at large
• Individual tates
• no fed grant for states that fail to comply

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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)

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Proponents- Organizational

• Center for Disease Control
• Institute of Medicine
• American Medical Association
• AIDS Project Los Angeles
• AIDS Healthcare Foundation
• Childrens AIDS Fund
• Medical Institute for Sexual Health and Beyond
  AIDS

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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. 

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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 bills importance

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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

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Interviews (Cont.)

• Rosa Peña, Bilingual Case Manager, AIDS Project
  LA (Proponent)
• Bill would increase likelihood of early Tx
• APLA supports bill
• Wouldnt you want to be aware of your status,
  if you knew that you could have an impact on your
  babies health?

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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

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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

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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 Yorks are coercive and
  displace prevention efforts for women.

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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 womens right to privacy and to
  their reproductive rights.

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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.

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Recent Efforts

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

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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

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Policy Recommendation

• YES, we recommend this federal bill pass in its
  current form!

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• QUESTIONS