Transcript 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)

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?
Public Health Service Act

Ryan White CARE Act Amendment

Subpart II, part B of Title XXVI sec. 2625
www.thomas.loc.gov
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 (DQueens/Long Island) introduces ‘Baby
AIDS’ legislation (1995)
www.house.gov/ackerman/press/babyaids.htm
Legislative History of ‘Baby AIDS’

Ackerman first proposes Women and
Children’s HIV Protection Act in 1995

HR 4426 May 11, 2000
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HR 4644 May 2, 2002
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HR 2049 May 9, 2003
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
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
Preventing Perinatal Transmission
www.doh.state.fl.us/disease_ctrl/aids/ trends/workshop/perinatal.pdf
Data - CDC HIV/AIDS
Surveillance Report (Dec 2001)

Cumulative HIV/AIDS cases in the US
HIV/AIDS Cases in the US(2001)
3% 2%
0-19
35%
20-39
40-59
60 and ov er
60%
www.apla.org
Data - LADHS: Quarterly Surveillance
Summary (1/15/03)

Cumulative Pediatric AIDS Cases in LA
County by Race/Ethnicity
Pediatric AIDS Cases in LA County
2%
17%
W hite
Black
Hispanic
47%
O ther
34%
www.apla.org
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
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
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
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
HR 2049 Analysis

Women tested with informed consent

Reduces AIDS treatment costs in long-run

Loophole

Great bill, but low priority issue
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)
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
Key Stakeholders

Expectant mothers

Newborn infants

Society at large

Individual $tates

no fed grant $$$ for states that fail to comply
Proponents- Political

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
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
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)
Proponents- Organizational
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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
Interviews

Jordan Goldes, Press Secretary for
Congressman Gary Ackerman (NY)
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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.”
Interviews

Craig Stevens, Press Secretary for
Congressman David Weldon of Florida
(Proponent)
 AIDS
awareness + prevention top priority
 Strives
 As
to ensure that bill passes in HOR
an MD, aware of bill’s importance
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
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?”
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
Opponents

NO organized opposition to federal bill

Possible opponents:
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groups opposing government intrusion into
private lives
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groups against federal control on issues
traditionally dealt via state/local government
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.”
Opponents (Cont.)

Center for Women Policy Studies
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Leslie Wolfe, President of Center for Women
Policy Studies

(THE FEDERALIST) article against bill
(www.thirteen.org/federalist/opinion-hiv.html)
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“Grave threat to women’s right to privacy and to
their reproductive rights.”
Opponents (Cont.)
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Op/ed in New York Times (5/15/98, p. A28)
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“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.”
Recent Efforts
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Not likely to reach a vote in this session of
Congress
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Anticipate strong push in January when
Congress resumes
Recommendations
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What needs to be done:
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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
Policy Recommendation

YES, we recommend this federal bill pass
in its current form!
QUESTIONS