7/13/2009

The following is a letter from the Foundation and several peer organizations to Jeff Crowley, the Director of the White House Office of National AIDS Policy, urging him to address the prevention, care, and treatment needs of women, infants, and children with HIV/AIDS as his office considers the development of a National HIV/AIDS Strategy.



Dear Mr. Crowley:

As advocates and organizations committed to serving women and children living with HIV/AIDS in the United States, we have long advocated for HIV/AIDS policies and programs that help these populations lead healthier, happier lives.  As your office considers the development of a National HIV/AIDS Strategy, we urge you to include provisions that address the unique prevention, care, and treatment needs of women, infants and children with HIV/AIDS, particularly in relation to prevention of mother-to-child transmission (MTCT) and pediatric treatment and research. 

Steadfast U.S. government support is needed to ensure that all pregnant women know their HIV status and have access to appropriate MTCT services.  Since the late 1990s, the U.S. has implemented MTCT protocols and programs that resulted in thousands of exposed infants being born free of HIV.  However, despite the dramatic reductions in infections due to effective MTCT prevention programs and prenatal care services, there are still 100-200 infants born with HIV each year.  Even more alarming is the increasing number of women of childbearing age with HIV infection, resulting in a growing number of babies exposed to HIV.  CDC estimates that the number of births to women living with HIV has increased by approximately 30 percent from 2000 to 2006.  We must remain vigilant in our efforts to promote testing of pregnant women for HIV and to provide women living with HIV the services they need to protect their own health and the health of their children. 
 
The development of a National HIV/AIDS Strategy is a critical opportunity to improve policies, protect women from unknowingly and unnecessarily transmitting the virus to their children, and improve the health status of women, infants, children and adolescents. 

We urge you to include the following priorities in the National HIV/AIDS Strategy in order to maximize the number of HIV-positive women receiving MTCT interventions:

• Emphasis on opt-out HIV testing of pregnant women: Reaching pregnant women with HIV testing is necessary to ensure that HIV-positive mothers are identified early and receive appropriate care and treatment. Although CDC guidelines on opt-out HIV testing in pregnancy are currently in place, in practice, these guidelines are not always followed or permitted under state regulations.  To ensure that every pregnant woman is tested for HIV, providers should offer opt-out HIV testing during early stages of pregnancy, rapid testing in labor and delivery settings when needed, and repeat testing in the third trimester for women at high risk of HIV infection.  Culturally appropriate information about HIV and the value of an HIV test in pregnancy should be readily available in these settings.  More must be done to better implement CDC guidelines and improve public and provider education of these guidelines in order to further decrease MTCT in the U.S.

• Better collection of MTCT data: CDC and HRSA collect data for purposes of improving HIV prevention and Ryan White CARE programs.  Better coordination and information sharing between agencies is needed to provide improved data on the number of pregnant women offered testing for HIV and offered PMTCT services.

In addition to efforts around MTCT, it is important for the National HIV/AIDS Strategy to address women as a growing segment of this epidemic.  In 2006, over 111,000 women aged 13-44 were living with HIV in the United States, and recent studies estimate that the number of women of childbearing age living with HIV in the United States grew by approximately 33–36 percent from 2000 to 2006.  This growing incidence rate among women has implications for the broader national epidemic as well as implications for increased HIV rates in infants and children.  As such, we recommend inclusion of the following priorities in the National HIV/AIDS Strategy: 

• HIV prevention efforts targeted to women:  More must be done to target women with prevention efforts, particularly adolescents and young women, in order to prevent the growing number of infections in this population.  Resources should be dedicated to implementing primary prevention strategies that have been proven effective with young women, with an emphasis on minority populations. 

• Increase routine screening of women as part of preconception care:  Greater emphasis should be put on HIV-testing for women outside of prenatal care.  Federal guidelines recommend and many states have taken steps to ensure that pregnant women know their HIV status, but more must be done to reach women in general.  HIV screening is critical to ensuring that women living with HIV know their status and have access to effective treatment to optimize their health and prevent future perinatal transmission if and when they choose to become pregnant. It also allows providers to engage women in discussions about the implications of an HIV-positive pregnancy before they get pregnant, including careful considerations about contraceptive use and the effects of pregnancy on the woman’s HIV infection and course of treatment. 

Finally, addressing the needs of infants and children affected by HIV/AIDS in the U.S. goes beyond prevention of MTCT.  According to CDC, more than 2,500 children currently live with HIV in the United States.  To this end, infants and children with HIV/AIDS must be considered in their own right as part of a national HIV/AIDS strategy.  Specifically, the following priorities must be addressed:  

• Access to HIV/AIDS research: Greater investment in and coordination of HIV/AIDS treatment and research throughout childhood - from birth to young adulthood - is needed as part of the National HIV/AIDS Strategy.  Federal research is necessary to ensure that infants, children and adolescents continue to have access to effective AIDS therapies, including better antiretroviral drug options and, someday, a pediatric HIV vaccine.  The benefits of such research not only extend to children with HIV/AIDS in the U.S., but also carry extremely large implications for infants and children in resource-poor countries.

• Linkages to care and treatment: The National HIV/AIDS Strategy must support medical care and treatment services for women, children, and families with HIV/AIDS.  This includes: access to HIV/AIDS specialty care for women, infants, children and adolescents; services tailored specifically to the needs of HIV-infected women, infants, children, adolescents and their families, particularly those provided by Part D of the Ryan White CARE program; and strong linkages to perinatal and pediatric research and clinical trials. 

We thank you for your consideration of the priorities outlined in this letter and greatly appreciate the opportunity to provide comments on this new strategic initiative.  We look forward to continuing to work with you and your staff during this process. If you have any questions, please feel free to contact Catherine Connor at 202-448-8493 or Jen Pollakusky at 202-448-8452.

Sincerely,

AIDS Alliance for Children, Youth, & Families
American Academy of Pediatrics
American College of Obstetricians and Gynecologists
Elizabeth Glaser Pediatric AIDS Foundation