- Deborah Parham, M.D.
Deputy Director of the Health Resources and Services Administration's HIV/AIDS Bureau
The intent of Dr. Parham's talk was to outline the history and structure of the Ryan White CARE (Comprehensive AIDS Resources Emergency) Act, and then to discuss how the lessons learned over the last ten years of providing services through this type of funding mechanism may be applicable to Africa.
Dr. Parham began by telling Ryan White's story, the HIV-positive boy from Indiana for whom this government funding is named. Ryan discovered he was HIV positive in the 1980s. He was a hemophiliac, and when others in his small community found out, he faced tremendous discrimination and intimidation. He was a courageous boy, who faced the protests of former neighbors and guns fired on his home, putting bullet holes in his bedroom window. In 1988, Senators Ted Kennedy and Orin Hatch began working on a bill to create new government funding to care for people living with AIDS. Hearing about Ryan's courage, they decided to name the bill in his honor, and Congress passed the bill in 1990.
Dr. Parham then described Ryan's counterpart in South Africa. A little boy, Nkosi Johnson, told his story at the XIII International AIDS Conference in Durban, South Africa. Standing in a large auditorium filled with thousands of doctors, activists, and reporters from around the world, Nkosi quietly and eloquently told his story of being orphaned due to AIDS and his subsequent adoption by Gayle Johnson. Today, the twelve-year-old boy, is nearly blind and unable to speak, due to an AIDS-related seizure. By linking the stories of Ryan White and Nkosi Johnson, Dr. Parham obviously hoped to establish a groundwork of similarities between the epidemic in the U.S. and Africa.
She then outlined the structure and history of the Ryan White CARE Act. Rather than recount her summary, interested readers may obtain far more information at Health Resources and Services Administration (HRSA)'s own website: http://hab.hrsa.gov/care.html.
Of note were the lessons that HRSA reports to have learned in its ten years administering the CARE Act. Dr. Parham enumerated these lessons and then explained that HRSA is just beginning to implement them in Africa.
- If you ask, people will tell you what they want and need.
HRSA attempts to accomplish this in the U.S., through the creation of planning bodies and community advisory boards whose goal is to prioritizes areas of funding for AIDS care. In Africa, HRSA is working with the Centers for Disease Control (CDC) to conduct a similar need assessments.
- The most effective care delivery involves a team approach.
HRSA is attempting to work with non-governmental organizations and community based organizations, as well as other U.S. agencies to build a network of care in some of the hardest hit areas. Dr. Parham stressed how vital this network will be to overcome the lack of medical infrastructure that exists in most African nations.
- Care delivery must be flexible enough to reach different populations in multiple settings and varying locations.
Although Dr. Parham did not go into detail about how HRSA would implement this lesson, she did mention newly forming partnerships with organizations like The Salvation Army and others that have been on the front lines of other health crises in Africa for many decades. Further, she outlined how HRSA was working to translate and adapt their training materials into languages other than English.
- Care delivery must be able to take place within challenging circumstances.
As mentioned throughout the conference, there are few circumstances that are not extraordinarily challenging for people living with HIV in Africa. Their care providers in many countries are HIV positive themselves, and struggle with woefully inadequate resources and competing health crises. That Dr. Parham did not enumerate the specific methods that HRSA may employ to overcome these challenging circumstances is at least a sign of their honest humility in the face of such overwhelming differences between their experience in the U.S. and the work they hope to accomplish in Africa.
- Effective care involves leveraging other resources and building partnerships.
HRSA is working to expand their existing partnerships with groups such as the Centers for Disease Control and other U.S. governmental agencies and forge partnerships with corporations who can provide much of the needed resources and funding to adequately address the challenges in Africa.