Reproductive Health and Preconception Care of HIV-

Infected Women

Development & Implementation of National Recommendations

Disclosure

With support from the Centers for Disease Control and

Prevention

The findings and conclusions in this presentation are those of the authors and do not necessarily represent the views of the Centers for Disease

Control and Prevention.

Objectives

• To briefly describe the importance of caring for the reproductive health of HIV-infected women in the US.

• To describe the process of developing national-level recommendations to improve the reproductive health of HIV-infected women.

• List selected recommendations made by the Expert Panel on Reproductive Health and Preconception Care of HIV-infected Women.

• To discuss progress toward implementing these recommendations to date.

Preconception Care of HIV-infected Women (1)

• Reproductive health needs not being met

• Separation of GYN and HIV care

• Preconception counseling and care not being addressed pro-actively

• Reproductive health care often not a priority for patients or providers

Preconception Care of HIV-infected Women (2)

• With improved survival and health and decreased risk of MTCT, many HIV+ women are choosing to conceive

• Effective contraceptive is underused; unplanned pregnancies are common

• Women face barriers related to stigma, safe conception with serodiscordant partners, and other issues

Preconception Care of HIV-infected Women

Chain of Events Leading to an HIV-infected Child

The proportion of women . . . Who are HIV-infected

Who become pregnant Who do not seek prenatal care

Who are not offered HIV testing Who refuse testing

Who are not offered ARV prophylaxis Who refuse ARV prophylaxis

Who do not complete ARV prophylaxis Whose infant does not receive ARV

prophylaxis Whose child is infected

despite prophylaxis

Adapted from IOM, 1998

Steps to Reducing Perinatal HIV Transmission

Primary HIV prevention in women Comprehensive preconception/interconception care

Prevention of unintended pregnancy in HIV+ women

Accessible, affordable, welcoming prenatal care

Universal prenatal HIV testing, including 3rd trimester repeat testing in areas of high-incidence

Re-offering testing to those who initially decline

Offer ARV treatment/prophylaxis to all HIV-infected women

Adherence support for ARVs

Rapid test for women with undocumented HIV status in labor

ARV prophylaxis for women identified in labor

ARV prophylaxis of all HIV-exposed newborns

Comprehensive services for mother and infant

FXB Center UMDNJ, 2002, 2009

We’re working on it!

Estimated number of births to women living with HIV infection, 2000-2006

5500

6000

6500

7000

7500

8000

8500

9000

2000 2001 2002 2003 2004 2005 2006

High Estimate Low Estimate

2006 estimate (8,650 – 8900) is ~30% > 2000 estimate (6075 – 6422)

Office of Inspector General (Fleming), 2002 Whitmore, et al. CROI, 2009

• Comparison of live birth rates 1994-1995 (pre-HAART era) and 2001-2002 (HAART era) in HIV+ and HIV- women 15-44 yrs

• In HAART era 150% increase in live birth rate among HIV+ women vs. 5% increase among HIV- women

Live Births Among HIV+ Women Before and After HAART Availability

Sharma, et al. AJOG 2007

Clinicians Fail to Routinely Provide Reproductive Counseling to HIV-Infected Women in the US

(Averitt Bridge et al. 2008)

Women Living Positive Survey• Interviewed 700 HIV+ women

– 31% were contemplating pregnancy or had been pregnant

– 48% were not asked by their HIV provider if they wanted to have a child

• Of women who had thought about pregnancy or who were pregnant– 41% had not discussed HIV treatment change in

event of pregnancy– 29% said their HIV provider did not explain the

effects of HIV medication on them or their baby

Contraceptive Use Among US Women with HIV

(Massad et al. J Women’s Health 2007)

By age 19 years, 24.2% of sexually active girls had

been pregnant at least once(6 had 2nd pregnancy, 1 had 3rd)

Screen for pregnancy in HIV-infected Adolescents!

Cumulative Incidence of First Pregnancy in 174 Perinatally HIV-Infected Sexually Active Girls Age

>13 Years, PACTG 219CBrogly SB et al. Am J Public Health 2007

Background of Recommendations

Spring 2008

• Key informant interviews

• Literature review

• Key topics, process, & invitees identifed

July 2008

• “Expert Panel” sponsored by CDC/FXB– 32 participants – governmental, academic and

community representatives

The Meeting

• Presentations laid groundwork

• Facilitated small group work

• Development of national recommendations with action steps

– Integrate RH and HIV care

– Primary HIV prevention

• Large group report back with discussion

• “One Wish”

• Buy-in for ongoing process

After the Meeting

• Recommendations prioritized– High/low impact and resources

• Expert Panel ongoing planning calls

• Publication and dissemination of recommendations– AIDS - Journal of the International AIDS

Society– APHA 2009– AIDS Alliance “Voices” 2010– ANAC 2008 & 2010

Policy Recommendations• Integrate adult and perinatal US treatment guidelines on

preconception care• Organize talking-points about data needs and present to

stakeholders in funding research• Advocate to CMS for reimbursement of services• Advocate for Ryan White to include additional funding for

women– Include Title X grantees to improve linkages– Co-locate clinics

• Conduct Special Project of National Significance (SPNS) projects to demonstrate integration of Title X and Ryan White care providers and services

• Collaborate with ACOG on defining preconception care in context of HIV infection

Program/Services Recommendations• Assemble and disseminate best practices that link

Title X agencies and Ryan White agencies• Add a HRSA quality indicator on preconception care • Develop trainings for HIV providers that increase

comfort and knowledge about HIV and pregnancy• Hold joint trainings for HIV and Title X providers• Advocate to the AETCs to increase their focus on

women’s health • Develop tools for busy HIV providers to streamline

preconception care and counseling• Create mentoring program for new HIV providers

Research/Data Recommendations• Perform a “fishing expedition” of existing data• Perform research that will address the following gaps

in data– # of HIV-infected women who deliver per year?– # of HIV-infected women who get pregnant each

year?– How many of these pregnancies are repeat

pregnancies?

• Conduct studies on– the efficacy of hormonal contraception for HIV-infected

women– the effectiveness of reproductive health technologies for

HIV-infected women on HAART– Pre- exposure prophylaxis (PrEP) for discordant couples

Progress on Recommendations (1)

• Integration of adult and perinatal guidelines

• Joined forces with like-minded advocates to write AIDS correspondence piece

• Joint training for family planning and HIV providers

• ACOG survey – Perinatal HIV screening practices

– Routine HIV screening practices

– Useful preconception care tools

Progress on Recommendations (2)

• Publication and promotion of recommendations – include Title X and HIV experts

• Preconception care and counseling tool• CDC Institute on perinatal prevention,

including preconception care, at Ryan White All-Grantees meeting in 2010

Progress on Recommendations (3)

• Preconception care incorporated into CDC’s national framework for perinatal elimination– Letter to Office of National AIDS Policy

– Ongoing work of the perinatal elimination stakeholders group

Conclusions

• Assuring the reproductive health for HIV-infected women in the US is a means to an end – the end being comprehensive care for women and progress toward the elimination of HIV-infection in children.

• The assembly of experts and ongoing working groups are a mechanism to forward changes to both clinical care and HIV policy in the US.

Thank You

To Dr. Jean Anderson for many of her slides for this presentation

&

To the members of the CDC/FXB Expert Panel