"People in the United States seem to have grown complacent and forgotten that HIV/AIDS is not just a problem overseas, but one here in our own nation. With as many as 1.1 million people in our country living with HIV/AIDS, our government, through passing a new Ryan White CARE Act, must ensure that lifesaving drugs, medical care, and social services are provided to those in need, wherever they live."
"Continued flat funding for CARE Act programs will do little to help eliminate current waiting lists, and nothing to extend care and treatment to people who aren't even on those lists. Instead, it will only serve to pit city against city and state against state for the limited dollars available. A person's ability to receive treatment should not depend upon where in the country they live."
"The Ryan White CARE Act works -- that is why it must be reauthorized. In the devastation following Hurricane Katrina, one of the only bright notes was that the Ryan White/ADAP system in states across the country went into high gear to assure that poor patients could access their life-saving medications. The CARE Act and the systems it has created serve as a model for all medical care in the U.S."
"Ryan taught us that AIDS can strike anyone, anywhere. As we work together to renew the Ryan White CARE Act, I urge the Congress and the Administration to provide adequate funding so that everyone who is in need of these lifesaving medications and medical care, can have the chance to live productive, healthy and longer lives."
"With as many as 1.1 million people in the U.S. living today with HIV/AIDS, and nearly 3 out of 4 of them uninsured or relying on public assistance, the CARE Act for them is a matter of life or death. This media campaign will remind Americans that HIV/AIDS exists in everyone's neighborhood and that despite the success of the Ryan White program, not all Americans have access to lifesaving care and treatment."
"The Ryan White CARE Act has a proven track record of success in providing lifesaving drugs as well as a full range of medical care and support services. The CARE Act is keeping people alive much longer than ever before. It has had strong bipartisan support from Congressional leaders over the years. We expect the same this year -- swift passage of reauthorization legislation this fall."
Resources at The Body:
About the Ryan White Action Campaign
Campaign Partners
The Ryan White ACTION Campaign is made up of the following organizations working together to get the Ryan White CARE Act renewed, strengthened and expanded:
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The AIDS Institute promotes action for social change through public policy research, advocacy and community education. It began as a grassroots community advocacy effort in the late 1980s. Over the past several years, TAI expanded its vision to become a leading national public policy research, advocacy and education agency with offices in Tallahassee, Tampa and Washington, DC. Affiliated with the Division of Infectious Diseases and Tropical Medicine at the University of South Florida College of Medicine, The AIDS Institute remains focused on HIV/AIDS while incorporating work on related health care issues such as hepatitis, as well as other infectious and chronic diseases. |
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The American Academy of HIV Medicine is an independent organization of AAHIVM HIV Specialists(TM) and others dedicated to promoting excellence in HIV/AIDS care. Through advocacy and education, the Academy is committed to supporting health care providers in HIV medicine and to ensuring better care for those living with AIDS and HIV disease. As the largest independent organization of HIV frontline providers, the AAHIVM's 2,000 members provide direct care to more than 340,000 HIV patients. This is more than two-thirds of the patients in active treatment for HIV disease. Nearly 50 percent of the Academy's members receive Ryan White CARE Act funding, with 18 percent of the Academy's members practicing in community clinics. |
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The HIV Medicine Association is an organization of medical professionals who practice HIV medicine. HIVMA represents the interests of its patients by promoting quality in HIV care and by advocating for policies that ensure a comprehensive and humane response to the AIDS pandemic informed by science and social justice. HIVMA represents the diversity of medical sub-specialties practicing HIV medicine -- including internal medicine, family practice, infectious diseases, oncology and obstetrics-gynecology. HIVMA has more than 2,700 members representing 49 states, the District of Columbia, Puerto Rico, the Virgin Islands and 36 countries outside of the United States. |
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The National Alliance of State and Territorial AIDS Directors represents the nation's chief state health agency staff who have programmatic responsibility for administering HIV/AIDS health care, prevention, education and supportive service programs funded by state and federal governments. State AIDS Directors in all 50 U.S. states, the District of Columbia, Puerto Rico, the U.S. Virgin Islands and the U.S. Pacific Islands are represented by NASTAD with an office in Washington, DC. NASTAD strengthens state and territorial-based expertise and brings them to bear in reducing the incidence of HIV infection, and on providing care and support to people living with HIV/AIDS. |
The Ryan White Story
Ryan White was diagnosed 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. He was, as Ted Koppel described him on Nightline, "an extraordinary young man; brave, tolerant and wise beyond his years."
During the time between his diagnosis in 1984 and his death in 1990, 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 Louganis 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. At the time, he was told he had no more than six months to live. While recuperating and thinking about the limited time he had left, Ryan told his mother Jeanne that he wanted to live a normal life, go to school, be with friends and enjoy day-to-day activities.
Unfortunately, Ryan's school and his community responded with fear and ignorance. The local superintendent refused to allow Ryan to attend school, a move supported by teachers and parents. Ryan and his family fought the decision, but Ryan was forced to "attend" school by telephone for months while his case made its way through an administrative appeals process. Once the state board of education ruled that he should be allowed to return to school a group of parents sued to keep him out. The courts ultimately ruled in Ryan's favor, and he did return to school.
Sadly, he was met with taunts and unfounded rumors and some students chose to be homeschooled rather than attend with Ryan. Ryan weathered the storm with tremendous patience and grace, never demonizing those who sought to demonize him.
Ultimately, though, the family decided to move to another community. According to Ryan, they made this choice because of their "desire to move into a bigger house, to avoid living AIDS daily and a dream to be accepted by a community and school." They moved to Cicero, Indiana, where Ryan enrolled in Hamilton Heights High School and was welcomed with open arms. The students had taken it upon themselves to learn about AIDS and educate their parents and teachers, as well. Ryan thrived in his new environment, attending school events, learning to drive and making the honor roll.
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. Though constantly surprised by the notoriety he received because of his seemingly simple wish just to go to school, Ryan nevertheless recognized the value of the spotlight and seized the opportunities he was given. 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.
Because Ryan was infected through blood products and not through sexual contact or intravenous drug use, many found him more sympathetic than others with HIV and AIDS. Ryan, however, rejected all attempts to portray him as "innocent." He never drew a line between himself and other people living with HIV and AIDS and always urged compassion and support for all people living with the disease.
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 established shortly after his death 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.
Legislative Status of the Ryan White CARE Act
Since 1990, the Ryan White Comprehensive AIDS Resources Emergency (CARE) Act has made federal funds available to metropolitan areas and states for health care costs and support services for low-income, uninsured and underinsured individuals and families affected by HIV/AIDS. The program authorization must be renewed by Congress every five years. In October 2000, it was extended through the 2005 fiscal year, which ends Sept. 30, 2005.
Funding for CARE programs in Fiscal Year 2005 totaled $2.073 billion. The President has requested level program funding (or "flat funding") for all Titles in FY2006, except a $10 million increase in the AIDS Drug Assistance Program. That amounts to a total request of $2.058 billion for Ryan White programs. If Congress does not extend the program by Sept. 30, it will still continue to operate under the current program rules. However, important changes to the program that could improve access to health care and medications for people with HIV/AIDS will be delayed.
In July of 2005, Health and Human Services Secretary Mike Leavitt outlined the changes the Bush Administration would like to see in the program. They were embodied in five principles -- serving the neediest first, focusing on life-extending services, increasing prevention efforts, increasing accountability and increasing flexibility.
Under these principles, a list of core medical services for HIV-positive people would be developed in order to prioritize federal funding. The Administration is proposing that 75 percent of Ryan White funds in Titles I-IV be spent on core medical services, and HHS would develop and maintain a list of core ADAP drugs.
States and local service providers also would be required to increase coordination of care delivery. Additionally, they would be encouraged to adopt routine HIV testing at public facilities, and allow the HHS Secretary to reallocate any unspent funds to the state AIDS Drug Assistance Programs with the most need.
The Senate is expected to act first on the bill this fall (2005), and its Committee on Health, Education, Labor and Pensions will draft legislation. The House Energy and Commerce Committee is then expected to draft a version of the bill for consideration by the full House of Representatives.
To see a list of Congress members who serve on these committees, click here to download the PDF.