1. Reproductive Health and Preconception Care of HIV- Infected Women Development & Implementation of National Recommendations

2. 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.

3. 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.

4. 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

5. 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

6. Preconception Care of HIV-infected Women

7. 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

8. 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 3 rd 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!

9. Estimated number of births to women living with HIV infection, 2000-2006 2006 estimate (8,650 – 8900) is ~30% > 2000 estimate (6075 – 6422) Office of Inspector General (Fleming), 2002 Whitmore, et al. CROI, 2009

10. 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

11. 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

12. Contraceptive Use Among US Women with HIV (Massad et al. J Women’s Health 2007)

13. By age 19 years, 24.2% of sexually active girls had been pregnant at least once (6 had 2 nd pregnancy, 1 had 3 rd ) Screen for pregnancy in HIV- infected Adolescents! Cumulative Incidence of First Pregnancy in 174 Perinatally HIV-Infected Sexually Active Girls Age >13 Years, PACTG 219C Brogly SB et al. Am J Public Health 2007

14. 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

15. 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

16. 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

17. 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

18. 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

19. 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

20. 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

21. 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

22. 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

23. 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.

24. Thank You To Dr. Jean Anderson for many of her slides for this presentation & To the members of the CDC/FXB Expert Panel