The Next Wave in AIDS Care: Reauthorization of the Ryan White CARE Act 2005-2010

It was June of 1981 when the Centers for Disease Control and Prevention (CDC) published its Morbidity and Mortality Weekly Report (MMWR) describing unusual occurrences of rare skin cancers and pneumonia among young homosexual men (www.cdc.gov/mmwr). According to scientists, there were cases that predate these first clusters, but the report was the first systematic gathering of case level data about the new illness. The following year, the CDC gave this syndrome a formal name: Acquired Immune Deficiency Syndrome (AIDS).

That same year, 1982, Congress held its first hearings on AIDS and the disease's transmission was finally linked to blood. At this time, the CDC identified four categories of "high risk" individuals: homosexuals, hemophiliacs, intravenous drug users, and Haitian nationals. With the creation of these categories came the creation of identifying behaviors which put individuals at risk for AIDS and placed the risk solely on categories of people. Arguably, this activity plants the seeds of stigma for AIDS infected individuals. It was not until a year later that the CDC added female sexual partners of men with AIDS as the fifth risk group. Also in 1983, at the first United States Conference on AIDS in Denver, CO, a group of people living with AIDS (PLWAs) stormed the stage and presented a statement on the rights of PLWAs born of frustration and outrage they experienced in preceding days. This statement of rights is referred to as The Denver Principles.

By the close of 1983, there had already been 1,292 AIDS deaths. In 1984, the virus that causes AIDS, later named Human Immunodeficiency Virus (HIV), was isolated by the French Pasteur Institute and, separately and a bit later, by the United States' National Cancer Institute. In an attempt to safeguard patrons, the City of San Francisco closed bathhouses, an act which elicited significant objections from community members citing personal liberties and freedom.

Finally, after publicly ignoring an impending epidemic, in 1985, President Reagan mentioned the word AIDS in response to a reporter's question. That same year, an antibody test was approved by the U.S. Food and Drug Administration (FDA) which allowed blood banks to start screening the public blood supply. Also in 1985, Ryan White, an Indiana teenager with AIDS, was barred from his school, initiating Ryan White's emergence into public life as a spokesperson against AIDS stigma and discrimination. Ryan became the first "mainstream" AIDS advocate and allowed the general public to begin considering the real impact of the disease regardless of previously held stereotypes of risk groups.

In 1986, President Reagan mentioned AIDS in a speech to Congress regarding the "Future of America" and by this time 16,301 people in the US had died from AIDS. That year finally brought some hope to AIDS sufferers as zidovudine (or AZT) was approved by the FDA as the first antiretroviral medication and Congress appropriated $30 million in emergency funds to states in an effort to provide AZT to residents. In response to the proposed public cost of AZT, the AIDS Coalition to Unleash Power (ACT UP) was formed and continued over the years to fight for early approval of experimental medications, reasonable public prices, and access to medicine on clinical trials for PLWAs. At the same time, the United States added HIV to a list of "dangerous contagious diseases" which excluded individuals from immigrating to the U.S. and mandated that all applicants be tested. In the same year, the AIDS memorial quilt was first displayed on the National Mall in Washington, DC, and Randy Shilts' "And the Band Played On" was released. Congress adopted a Jesse Helms sponsored amendment banning the use of federal funds for AIDS education materials that "promote or encourage, directly or indirectly, homosexual activities." Many people refer to this piece of legislation as the "no promo homo" policy.

By 1988, during the administration of George H.W. Bush, members of the federal government began responding to AIDS as the U.S. Surgeon spent an unprecedented amount of resources mailing AIDS education materials to all households in the U.S. Also, Congress passed the U.S. Health Omnibus Program Extension (HOPE) Act of 1988 authorizing federal agencies to fund AIDS testing and prevention education. Meanwhile, the National Institutes of Health (NIH) organized the AIDS Clinical Trials Group (ACTG) and established the Office of AIDS Research (OAR). As the decade came to a close, scientists issued guidelines for treating an opportunistic infection, Pneumocystis carinii pneumonia (PCP), responsible for the suffering and death of many PLWAs. By this time, the world had lost famous individuals such as Alvin Ailey, Robert Mapplethorpe, Liberace, and Rock Hudson to AIDS while scores of everyday loved ones were taken. In fact, in 1990 alone, more than 18,447 people succumbed to AIDS.

As the new decade dawned, Congress enacted the Ryan White Comprehensive AIDS Resources Emergency (CARE) Act of 1990, designed to provide funding for community based HIV/AIDS care and treatment, ameliorating the burden being placed on the public health system, especially in large cities being devastated by the epidemic. Sadly, Ryan White passed away only months before the piece of legislation bearing his name and carrying his legacy was enacted. Over the years, the CARE Act has evolved and continues to provide essential and life saving services to hundreds of thousands of low-income or underinsured people living with HIV and AIDS. (The CARE Act is discussed in much more detail in following sections).

With awareness about AIDS beginning to grow, the first National Conference on Women and AIDS was held, the FDA finally approved AZT for pediatric use, and the Americans with Disabilities Act of 1990 was passed to protect individuals with disabilities, including people with HIV and AIDS, from discrimination.

Helping reshape public opinion on HIV/AIDS, in 1991, Earvin "Magic" Johnson publicly announced that he was infected with the AIDS virus.

Magic, an internationally famous basketball star, showed the public that the virus did not discriminate against race, religion, gender, or sexual orientation. Magic also helped to motivate the African-American community to increase their testing rates and prevention education. In the same year, Congress passed the Housing Opportunities for People with AIDS (HOPWA) Act of 1991, designed to help people living with AIDS find and keep adequate housing.

The Eighth International AIDS Conference planned to be held in Boston, was moved to Amsterdam due to the US immigration ban. In 1993, President Clinton established the first cabinet-level position related to AIDS, named the White House Office of National AIDS Policy (ONAP). Since AIDS is partially defined by the infections or diseases that manifest as a result of deficient immune responses, the CDC, in 1993, expanded its definition to include diseases prevalent among intravenous drug users and conditions specific to women. By doing so, more individuals would receive an AIDS diagnosis than before as more conditions became accepted as manifestations of decreased immune function. This change had significant ramifications for low-income women as an AIDS diagnosis was required for many of the services funded by states and the federal government. Without an AIDS diagnosis, many women were not eligible for the services that they so desperately needed. The CDC's expansion of the AIDS definition provided more women access to life saving services and treatment.

Responding to the need for an increased level of national mobilization, the first annual "AIDSWatch" brought hundreds of advocates, including many PLWAs, to Washington, DC, to speak with their Congressional representatives about increased HIV/AIDS funding, prevention education, and awareness.

After having discovered the vertical transmission rates (mother to child) of HIV positive pregnant women, researchers set out to find a course of treatment to reduce the seroprevalence rates of newborns. In 1994, the U.S. Public Health Service began recommending the use of zidovudine, or AZT, by pregnant women. This decision was based on an NIH-funded study, dubbed "076", which demonstrated an up to 70% reduction in vertical transmission of HIV using the medication. Additionally, the FDA approved the first non-blood based antibody test, an oral test, and AIDS became the leading cause of death for all Americans aged 25-44 years.

Great advances were made in the areas of therapy and treatments in the late 90's. In 1996, the FDA approved a viral load test that measured the amount of HIV virus in the patient. This test had far reaching implications for therapies. Ushering in a new age of HIV treatment, the first protease inhibitor, saquinavir, was approved by the FDA. With the approval of the first protease inhibitor and, soon after, the first non-nucleoside reverse transcriptase inhibitor (NNRTI), nevirapine, the phrase Highly Active Antiretroviral Therapy (HAART) was introduced. This system of treatment combined different classes of medications to attack the virus on numerous fronts. With the advent of new treatment options came renewed hope for the future as this innovative system of treatment lead to dramatic decreases in the mortality rate of HIV/AIDS infected individuals.

By 1997, death rates in some areas of the country had dropped by as much forty percent. Understanding the impact of this new wave of treatments and therapy options, Congress approved the FDA Modernization Act which allowed for an accelerated approval process for new medications and the dissemination of off-label information for approved medications. Unfortunately, by 1998, medical providers and PLWAs started to notice some serious side effects of HAART, as well as treatment failures for certain individuals. At this time, physicians started to become increasingly aware of the individualized responses that people had to HAART and began to seriously consider the research implications. In this same year, the Minority AIDS Initiative was created after significant public outrage from African-American leaders who declared a "state of emergency" for their community. The Congressional Black Caucus (CBC) requested that the Administration respond similarly.

In what seemed like an amazing turn of events, Donna Shalala, Secretary of the Department of Health and Human Services announced that her department had determined, through existing research, that needle exchange programs are effective in reducing the spread of HIV and AIDS and did not encourage the use of illegal drugs. President Clinton, despite his own Secretary of Health and Human Services' report, did not lift the ban on the use of federal funds for needle exchange programs.

By the turn of the century, 21.8 million people worldwide had died from HIV/AIDS. Great strides had been made in terms of treatment and therapies, as well as in terms of accessing treatment and care. Infrastructure that had not existed before AIDS that had been created to serve PLWAs had effects beyond the infectious disease. At this time, and based on the advancements in the United States, the focus of many advocates' efforts started to turn outside of the country to developing nations around the world. In the year 2000, the United States and the United Nations declared HIV and AIDS a national and world security threat. That same year, the 13th International AIDS Conference was held for the first time in a developing nation, South Africa, which helped expose the impact of AIDS on developing nations. Additionally, Congress appropriated its first significant sum of money to the Global AIDS and Tuberculosis Relief Act and as part of the Millennium Declaration, which features the Millennium Development Goals, including helping to halt the spread of HIV/AIDS. Domestically, the first expansion waivers (under 1115) were approved in DC, Maine, and Massachusetts. These waivers allow Medicaid programs to offer services to people with HIV without ever having had an AIDS diagnosis.

In his 2003 State of the Union Address, President George W. Bush astonished the world by announcing a plan to contribute $15 billion over five years to address the AIDS crisis in some of the world's most devastated countries. Congress met his challenge and passed the President's Emergency Plan for AIDS Relief in a matter of months. President Bush then appointed Randall Tobias as the nation's first Global AIDS Coordinator, which carries the rank of an Ambassador.

In June 2004, President Bush announced his support for reauthorization of the CARE Act, and addressed the waiting list in the AIDS Drug Assistance Program with a one time $20 million in additional funding. Meanwhile, the Institute of Medicine released a study that finds that over 233,000 people in the United States do not have consistent access to Highly Active Anti-Retroviral Treatment (HAART).