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 (D- Queens/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

HR 4644 May 2, 2002

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)

2%

60%

35%

3%0- 19

20- 39

40- 59

60 and over

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

17%

34%

47%

2%

White

Black

Hispanic

Other

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 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

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) 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 to ensure that bill passes in HOR

As 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:

groups opposing government intrusion into private lives

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 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.”

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.”

Recent Efforts

Not likely to reach a vote in this session of Congress

Anticipate strong push in January when Congress resumes

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

Policy Recommendation

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

QUESTIONS