The Ryan White Program
WHO WAS RYAN WHITE?
Ryan White was diagnosed as a young boy with AIDS at age 13 and gained international notoriety fighting for his right to attend school. In the process, he opened the hearts and minds of millions of people.
Ryan was featured on numerous television shows and magazine covers and was the subject of a television movie about his life. He became friends with world-renowned athletes and entertainers, including Elton John, Greg Luoganis, and Michael Jackson, all of whom offered Ryan and his family their support. He spoke out often and eloquently about the challenges he faced and the need for greater compassion towards people with HIV and AIDS. Despite the ravages of the illness to his body and the discrimination he faced, Ryan remained a positive, healing force throughout his life.
Ryan contracted HIV through blood-based products used to treat his hemophilia. He learned that he had the virus when he contracted a life-threatening lung infection. Ryan’s story captured the attention of the media and the public and his courage, determination, and positive attitude made him a hero for many.
. Throughout all of his appearances, he gave voice to the desires of thousands of people with HIV/AIDS who wanted only to be treated with respect and compassion and given the opportunity to live as normal a life as possible. Ryan’s visibility and outspokenness were especially crucial in the early days of the AIDS epidemic.
Ryan died on Palm Sunday, April 8, 1990, with his mother, his sister Andrea, his grandparents, his uncle and his friend Elton John at his bedside. Ryan’s funeral was among the largest in Indiana history. Elton John performed at the ceremony, which included Michael Jackson and First Lady Barbara Bush among the mourners.
Ryan’s legacy lives on in many ways. The Ryan White CARE Act is a federal program that funds services for over 500,000 people with HIV/AIDS each year. The annual Ryan White Youth Conference brings together young people working on HIV/AIDS in communities across the country and the Ryan White Forest commemorates the lives of people with AIDS in Israel. Ryan’s mom, Jeanne White-Ginder continues to speak with audiences across the country, carrying Ryan’s message of love, compassion and hope.
The Ryan White Program is Federal legislation that addresses the unmet health needs of persons living with HIV disease (PLWH) by funding primary health care and support services that enhance access to and retention in care. First enacted by Congress in 1990, it was amended and reauthorized three times since—in 1996, 2000, and 2006. The Ryan White Program reaches over 500,000 individuals each year, making it the Federal Government's largest program specifically for people living with HIV disease.
Like many health problems, HIV disease disproportionately strikes people in poverty, racial/ethnic populations, and others who are underserved by healthcare and prevention systems. HIV often leads to poverty due to costly healthcare or an inability to work that is often accompanied by a loss of employer-related health insurance. Ryan White-funded programs are the "payer of last resort." They fill gaps in care not covered by other resources. Ryan White clients include people with no other source of healthcare and those with Medicaid or private insurance whose care needs are not being met.
Ryan White services are intended to reduce the use of more costly inpatient care, increase access to care for underserved populations, and improve the quality of life for those affected by the epidemic. The Ryan White Program works toward these goals by funding local and State programs that provide primary medical care and support services; healthcare provider training; and technical assistance to help funded programs address implementation and emerging HIV care issues.
The Ryan White Program provides for significant local and State control of HIV/AIDS healthcare planning and service delivery. This has led to many innovative and practical approaches to the delivery of care for PLWH.
The Ryan White Program addresses the health needs of persons living with HIV disease (PLWH) by funding primary health care and support services that enhance access to and retention in care. The following principles were crafted by HAB to guide Ryan White programs in implementing Ryan White provisions and emerging challenges in HIV/AIDS care:
* Revise care systems to meet emerging needs. The Ryan White Program stresses the role of local planning and decision making-with broad community involvement-to determine how to best meet HIV/AIDS care needs. This requires assessing the shifting demographics of new HIV/AIDS cases and revising care systems (e.g., capacity development to expand available services) to meet the needs of emerging communities and populations. A priority focus is on meeting the needs of traditionally underserved populations hardest hit by the epidemic, particularly PLWH who know their HIV status and are not in care. This entails outreach, early intervention services (EIS), and other needed services to ensure that clients receive primary health care and supportive services-directly or though appropriate linkages.
* Ensure access to quality HIV/AIDS care. The quality of HIV/AIDS medical care-including combination antiretroviral therapies and prophylaxis/treatment for opportunistic infections-can make a difference in the lives of PLWH. Programs should use quality management programs to ensure that available treatments are accessible and delivered according to established HIV-related treatment guidelines.
* Coordinate services with other health care delivery systems. Programs need to use Ryan White services to fill gaps in care. This requires coordination across Ryan White programs and with other Federal/State/local programs. Such coordination can help maximize efficient use of resources, enhance systems of care, and ensure coverage of HIV/AIDS-related services within managed care plans (particularly Medicaid managed care).
* Evaluate the impact of funds and make needed improvements. Federal policy and funding decisions are increasingly determined by outcomes. Programs need to document the impact of Ryan White funds on improving access to quality care/treatment along with areas of continued need. Programs also need to have in place quality assurance and evaluation mechanisms that assess the effects of Ryan White resources on the health outcomes of clients