Entering the 35th Year of AIDS: Where We’ve Come From, Where We’re Going

2015-06-10 | , AIDS United

On June 5 1981, The Centers for Disease Control and Prevention’s (CDC) weekly publication Morbidity and Mortality Weekly Report (MMWR) published the now famous case reports of five young, previously healthy men in Los Angeles who were treated for Pneumocystis carinii pneumonia. The article concluded that “the fact that these patients were all homosexuals suggests an association between some aspect of a homosexual lifestyle.” [1] Now entering the 35th year of the HIV/AIDS pandemic, we have an opportunity to reflect on how the biomedical, social and political issues engendered by the HIV/AIDS crisis has evolved.

Since the MMWR publication, HIV/AIDS has reached across demographics in every country in the world. It has defied the strongly held belief, verbalized by then Congressman Robert S. Walker that, “most people are not going to get AIDS. Homosexual males, particularly those with very high numbers of sexual liaisons, intravenous drug abusers and users, hemophiliacs, and Haitians are the groups at risk […] AIDS is not spreading widely on a geographic or demographic basis.” [2]  In fact, we now know that any person can be at risk for HIV infection, despite many people's outdated perception of risk.

Grassroots social activism of the 1980s and 1990s by organizations such as ACT UP, AIDS Action (a predecessor of AIDS United), Gay Men’s Health Crisis among countless others, worked on the plethora of barriers and inequalities in American society that AIDS brought to the surface. Issues of healthcare access, housing, and research ethics were among the problems addressed by these groups, who challenged the fundamental homophobia, racism and sexism within institutions and government.

The Ryan White Care Act is a legacy of this work and funds states, cities, clinics, and nonprofit HIV service organizations to provide HIV care and treatment, as well as the essential support services that increase linkage and retention in care. We also see the ethics of this movement in the Affordable Care Act, which makes getting health insurance easier, bans discriminatory practices based on pre-existing medical conditions (including HIV), and provides incentives to increase health care quality while lowering costs. It is the largest and most comprehensive change to our health care system in over 50 years.

One newly-noticed cause of concern is the increasing incidence of HIV in rural parts of the United States. Earlier this year, Governor Mike Pence declared a state of emergency for Scott County, as a rural region saw more than 160 injection drug related, new HIV infections in 6 months, where the previous year had seen 5 cases. Indiana and bordering states reminds us of the barriers continue into the 35th year of HIV/AIDS, such as the federal ban on funding of syringe exchanges. Had an effective syringe exchange been in place, it may have averted this most recent localized crisis.

The 30 year sentence of 23 year old Missouri student Michael Johnson for HIV non-disclosure stands as another testament to ongoing stigma which has characterized the last three and half decades of HIV/AIDS. Criminalization laws track back to the early days of the HIV epidemic when many states created statutes that would penalize people who knew their HIV-positive status and had possibly exposed other people to HIV. Currently, more than 30 states have laws on the books that criminalize HIV exposure, although the behaviors that constitute exposure vary by state and are often not based on scientific knowledge related to HIV transmission.

At a 1983 Government Response Hearing in the House of Representatives that spanned multiple days, CongressmanTed Weiss asked questions of the many witnesses that still resonate today. “Are adequate resources available for research, treatment, and prevention? How comprehensive are the research and surveillance activities? What is the extent of coordination in the efforts to fight the epidemic? What is the scope of public education and how effective is it? How accessible is health care for persons with AIDS?” [3]

Today we continue to ask the same questions, with equally unsatisfactory answers. In the same hearing, former Congressman Walker stated, “I spoke of a cure, and I believe we will eventually solve this medical mystery. We should be careful to avoid the inevitable push for more money as if dollars are a magic potion.” Now in the 35th year, with the new burden of federal budget cuts and sequestration, the cure remains elusive, and we continue to struggle for enough money support organizations who engage with the social and political issues of the crisis.

Still, there is cause for optimism. Effective antiretroviral drugs, treatment as prevention, developments in pre-exposure prophylaxis, the creation of the National HIV/AIDS Strategy, and new state-led efforts to push for an end to AIDS are progress towards our ultimate goal to halt the epidemic.

As we enter the 35th year, with increasingly effective prevention tools and treatments for affected by HIV/AIDS, it is as important now as it was in the early days to engage socially and politically. As the past three and a half decades have shown, it will take more than a cure to truly end the AIDS crisis.