The Ryan White CARE Act: The Cost of HIV Treatment

The Ryan White CARE Act, also known as the AIDS Prevention Act of 1990, turned 25 years old this month. In the thirty or so years since the start of the HIV Epidemic, few programs have had the impact of the Ryan White HIV/AIDS Program and the young man who bravely fought his battle with HIV/AIDS while using his experience to teach others and spread love. Celebrate the anniversary of this incredible program that has helped save thousands of lives by learning about the history of the program and its namesake, Ryan White.

The Ryan White Comprehensive AIDS Resources Emergency (CARE) Act is an amendment to the Public Health Service Act that was introduced to the Senate by Senator Edward Kennedy to provide HIV/AIDS services for HIV-positive people who lack the health care benefits that would allow them receive care for their HIV/AIDS diagnosis. It was approved by Congress and signed into law by President George H. W. Bush on August 18, 1990. It has been reauthorized twice by President Bill Clinton in 1996 and 2000, and twice by President Barack Obama in 2006 and 2009.

The Ryan White CARE Act, known as the Ryan White HIV/AIDS Program, created provisions for the health care funding needs of poverty-stricken and uninsured HIV/AIDS patients as part of the largest federally funded program for HIV/AIDS in the U.S. Considered a “payer of last resort,” Ryan White programs pay for treatments when other resources are unavailable. Each year, about 500,000 people and 2,500 organizations receive funding to provide low or no cost HIV/AIDS treatments, as well as training and technical assistance to medical providers and support services. A large portion of the budget (more than 30 percent) allocated by the Ryan White CARE Act goes to the AIDS Drug Assistance Programs (ADAP), which provide patients with FDA-approved HIV medication, such as antiretrovirals that keep the virus from progressing to the advanced condition known as AIDS. The program also provides funds for primary care, counseling and support services, and training for health care providers.

The Ryan White CARE Act was named after Ryan White, a teen from Indiana who became the poster child for HIV/AIDS after being diagnosed with HIV at age 13 and expelled from middle school because of his HIV-positive status. Ryan, a severe hemophiliac, contracted HIV from a contaminated blood transfusion and was ostracized by his classmates and community due to ignorance about HIV/AIDS, which was still thought of as a “gay disease” at the time. Conflicting beliefs were widely held that HIV was a disease that only infected gay people, but could also be transferred through simple, non-sexual contact. HIV testing was still in its infancy, with basic tests and very little information available to the public. After being kicked out of and later re-admitted to school, Ryan and his family founded an alternative school so he could escape the bullying and threats that plagued him.

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Ryan White became a reluctantly high profile figure in the fight against HIV/AIDS, spreading awareness of the non-sexual ways HIV can be spread and speaking about the health issues and stigma that accompany the disease in interviews and as part of benefits and public programs. He spoke at President Ronald Reagan’s Commission on the HIV Epidemic in 1987, emphasizing the importance of AIDS education. Despite being given a six-month life expectancy, Ryan lived with AIDS for five years longer than expected. An ABC movie, The Ryan White Story, was made about his life shortly before he died on April 8, 1990.

The support Ryan received from celebrities and public figures around the world, including Michael Jackson and Elton John, increased the public’s awareness about HIV and AIDS. Prior to his death at age 18 of AIDS-related complications, Ryan was a hopeful teenager who looked forward to going to his prom and attending college. He was never truly comfortable with the spotlight, but he used the time he had left once he was diagnosed to educate and make the world a better place for people living with HIV/AIDS. Ryan’s legacy lives on in the millions of people whose lives have been extended thanks by the Ryan White HIV/AIDS Program in the last 25 years.

 

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Author: Kristena Ducre

Kristena is a sex-positive LGBTQ ally and general fan of sexy things. As a writer, she is passionate about empowering people's sex lives with accurate and straightforward information. Sex can be a ton of fun, but sexual health is not a laughing matter. In the bedroom, as in life, knowledge is power.