March 24, 2009

Public Comment before the Presidential Advisory Council on HIV/AIDS

Presented on behalf of AIDS Alliance for Children, Youth, and Families by Sable K. Nelson

Thank you. To the distinguished members of the Presidential Advisory Council on HIV/AIDS, my name is Sable K. Nelson representing the AIDS Alliance for Children, Youth, and Families. Founded in 1994, AIDS Alliance is a national non-profit organization whose goal is to enhance and expand access to quality, comprehensive, family-centered care for America's children, youth and families affected by HIV and AIDS. Our organizational members comprise a national network over of 650 community-based programs, the majority of whom receive funds through Part D of the Ryan White Program. Part D grantees serve more than 53,000 HIV-affected women, children, youth and families through sites located in 35 states, the District of Columbia, Puerto Rico, and the U.S. Virgin Islands.

AIDS Alliance urges PACHA to support reauthorization or extension of the Ryan White HIV/AIDS Treatment Modernization Act in 2009 and stresses the importance of Part D in providing care and support services to low-income women, children, youth and families affected by HIV.  Part D of the legislation focuses on family. It is well documented that when the entire family unit (which includes women, care-giving men, children and youth) is the client, the health of each infected and affected family member improves. This family-centered-approach, which honors cultural diversity and family traditions and encourages participation and collaboration in decision-making, is unique to Part D of Ryan White. Additionally, through the efforts to reduce mother to child transmissions, Part D provides a critical and essential link between care and prevention. Moreover, the provision of necessary supportive services (including case management, transportation, child care, etc) link HIV-infected family members to care and increase adherence. Without these services, many HIV-positive women and youth would be completely unable to tap into the health care continuum.   

AIDS Alliance commends PACHA for the adoption of a resolution at the last meeting in support of increased appropriations for 1) HIV/AIDS research at the NIH; 2) HIV/AIDS prevention, testing, and surveillance programs at the CDC; 3) HIV/AIDS care, treatment, and support services through the Ryan White Program, including ADAP; and 4) housing through the HOPWA program. Although Part D is the smallest title of Ryan White, an increase in funding is necessary. Expanded testing of women and youth has led to more people needing to be linked to care and despite the advances that have been made in reducing mother to children transmissions, more can be done. Also, the support services that Part D provides are not covered by public or private insurance. When the availability of services does not increase with the increase in need (validated by both the new HIV incidence numbers and local programs), a downward spiral emerges. The services provided by Part D are critical in preventing this from happening. 

Finally, AIDS Alliances urges PACHA to support the Early Treatment for HIV Act (ETHA) as a part of a National HIV/AIDS Strategy.  Access to medical care and effective treatment will limit the number of people whose health status progresses to full-blown AIDS and minimize health care costs.

AIDS Alliance would like to offer our assistance in PACHA’s discussions of what a National Strategy may look like. We believe it's important to have the engagement of all levels and branches of government, interested communities, and businesses when creating a plan that will coordinate our government's domestic response to the HIV/AIDS epidemic.

Thank you.