Who is Ryan White?
Ryan Wayne White (December 6, 1971 – April 8, 1990) was an American teenager from Kokomo, Indiana who became a national poster child for HIV/AIDS in the United States, after being expelled from middle school because of his infection. A hemophiliac, he became infected with HIV from a contaminated blood treatment and, when diagnosed in December 1984, was given six months to live. Doctors said he posed no risk to other students, but AIDS was poorly understood at the time, and when White tried to return to school, many parents and teachers in Kokomo rallied against his attendance. Before White, AIDS was a disease widely associated with the male homosexual community, because it was first diagnosed there.
A lengthy legal battle with the school system ensued, and media coverage of the case made White into a national celebrity and spokesman for AIDS research and public education. He appeared frequently in the media with celebrities such as Elton John, Michael Jackson and Phil Donahue. Surprising his doctors, White lived five years longer than predicted and died in April 1990, one month prior to his high school graduation.
Ryan White Legislation
The U.S. Congress passed a major piece of AIDS legislation, the Ryan White Care Act, shortly after White's death. The Act was reauthorized in 2006 and again on October 30, 2009; Ryan White Programs are the largest provider of services for people living with HIV/AIDS in the United States.
The act is the United States' largest federally funded program for people living with HIV/AIDS. The act sought funding to improve availability of care for low-income, uninsured and under-insured victims of AIDS and their families.
Unlike Medicare or Medicaid, Ryan White programs are "payer of last resort," which fund treatment when no other resources are available. As AIDS has spread, the funding of the program has increased. In 1991, the first year funds were appropriated, around US$220 million were spent; by the early 2000s, this number had almost increased 10-fold. The Ryan White Care Act was reauthorized in 1996, 2000, 2006 and 2009. The program provides some level of care for more than 500,000 people a year. The Ryan White programs also fund local and State primary medical care providers, support services, healthcare provider training programs, and provide technical assistance to such organizations.
Ryan White Parts
Part A provides emergency assistance to Eligible Metropolitan Areas (EMA) and Transitional Grant Areas (TGA) that are most severely affected by the HIV/AIDS epidemic. For access to the FY10 Client Services Handbook, which includes the breakdown of funds by service category, and a full list of Part A funded programs in the Boston EMA click here.
Part B provides grants to all 50 States, the District of Columbia, Puerto Rico, Guam, the U.S. Virgin Islands, and 5 U.S. Pacific Territories or Associated Jurisdictions.
Part C provides comprehensive primary health care in an outpatient setting for people living with HIV.
Part D provides family-centered care involving outpatient or ambulatory care for women, infants, children, and youth with HIV/AIDS.
Part F provides funds for a variety of programs:
Boston Planning Council History
The Ryan White Treatment Modernization Act was created to allow municipalities to form HIV Health Services Planning Councils to implement services to persons with HIV/AIDS. The make-up of these Councils include representatives from health and social service providers, public health officials, AIDS service organizations, and the affected community including HIV positive individuals.
Part A mandates the formation of a Planning Council to provide guidance on the allocation of funds received. In 1990, all EMAs were faced with the challenge of creating a Planning Council, gathering information about the service needs of those infected with HIV/AIDS in their region, evaluating the adequacy of the service system to meet these needs, and completing a grant application within a very limited time frame. Fortunately, previous community efforts in Boston had created a body well suited to become the eventual Planning Council, and that was the Steering Committee of the Boston AIDS Consortium (BAC). For a full timeline of the Boston EMA Planning Council click here.
Currently, members of the Boston Ryan White Planning Council are appointed Chief Elected Official of the EMA’s largest city. The Mayor is the CEO of the EMA’s largest city and grantee for Ryan White Part A funds. Legislation charges the Ryan White Planning Council with the following responsibilities:
- Develop a comprehensive plan for the organization and delivery of HIV-related health services.
- Establish service priorities for the categorical allocation of Part A funds.
- Assess the efficiency of the administrative mechanism in rapidly allocating funds.
- Assess the effectiveness of services.
- Participate in the development of the Statewide Coordinated Statement of Need (SCSN) initiated by the state public health agency responsible for administering grants.
- Establish methods for obtaining input on community needs and priorities that may include public meetings, conducting focus groups, and convening ad-hoc panels.
The Council does not directly fund or contract with agencies to provide client services. The Administrative Lead Agent (Boston Public Health Commission) is responsible for contracting with agencies according to the descriptions, priorities, & allocations determined by the Council in order to acquire services for people living with HIV/AIDS in the Boston EMA. The Council evaluates how well the Administrative Lead Agent performs in contracting the provision of services.
Historically, Planning Council Support (PCS) staff have conducted various recruitment activities. New members are recruited through mailings, site visits, and personal conversations. The Nominations Committee reviews applications and makes recommendations to the Mayor. The Mayor reviews, approves, and makes the official appointments. Upon appointment, members are expected to:
- Examine the HIV epidemic and the current health care system in the Boston EMA through a biannual Needs Assessment and Funding Streams Analysis.
- Assist in planning for the HIV health care service needs of the Boston EMA.
- Determine service priorities for the Boston EMA.
- Vote on the types of services funded and the level of funds.