Thursday May 5, 2005 — AIDS activists from around the country arrived in Washington to place 8,500 pairs of shoes before the White House. The shoes were meant to symbolize the 8,500 who die daily of AIDS worldwide. “We want the president to look out the window and see his inaction,” explained ACT UP veteran and co-founder/ President of Housing Works, the nation’s most militant AIDS organization. The event was the first of a year of events organized as the Campaign to End AIDS (C2EA). The C2EA will conclude with a national caravan of buses and marches (including a three-week walk by foot) to Washington to push for a new approach to AIDS activism and service provision in the United States.
Why is a new approach necessary? Consider recent events in AIDS activism. On May 20th, 2004, some thousands of activists (including this writer) participated in the largest AIDS civil disobedience in Washington for over a decade, with over 100 arrests. “The history of the AIDS movement is marked by direct actions that have galvanized public and private responses to the epidemic,” said Terje Anderson, Executive Director of the 21-year-old National Association of People with AIDS. “It’s time to put our bodies on the line again – we’ve got to wake these folks up.” Yet, this action, like many others over the long hot summer between it and the 1,800 arrests during the Republican National Convention protests of August/September 2004, failed to slow the AIDS catastrophe or reverse the erosion of the US social safety net which allows AIDS to grow unabated.
In the days after a fall election in which more Americans voted than in any other in history, members of Housing Works started a national conversation about changing the course of AIDS activism. Instead of only fighting the yearly rounds of AIDS service cuts, Housing Works founder Charles King suggested AIDS activists push for a far broader, more radical approach. Rather than view AIDS as a distinct tragedy in isolation from poverty and homelessness, King suggested AIDS activists take a larger view. At the AIDS demo on May 5th, King explained that this approach “starts with fully funding the Ryan White CARE Act, Housing Opportunities for Persons with AIDS (HOPWA), the Global Fund, and honest prevention education — but it ends when we bring the epidemic to an end” — once and for all. King concluded with an emphatic declaration: “We will not stop until AIDS is over for everyone.”
Until recently, the necessity to take AIDS activism beyond the limited scope of a single-issue movement was not obvious to all AIDS activists, for, even in the most politically conservative of times, AIDS activists managed to make headway when other interest groups experienced cuts. For example, the budget for the 1990 Ryan White Comprehensive AIDS Resources Emergency (CARE) Act, which provides funds for AIDS-related services in the United States, has expanded almost tenfold — from $220 million to $1.9 billion — through three presidential administrations and despite power shifts in Congress over a decade and a half. Even in 1996, the year when Aid to Families with Dependent Children (AFDC) was “reformed” — i.e., cutting funding for poor families and thereby gutting a cornerstone of the American social safety net — the Ryan White CARE Act was reauthorized with increased funding. Therefore, few involved with AIDS service provision were thinking beyond “getting another piece of the pie” during Ryan White funding reauthorizations.
However, the 2004 election results brought home that successes of the past could not last forever, just as another round of Ryan White authorizations loomed on the horizon in 2005.
After all, HIV/AIDS policy in the United States has never been insulated from the influence of larger policy trends and problems such as privatization of social welfare services, expansion of income inequality, lack of nationalized health care, reduction of social security provisions, a housing crisis, and an inordinate incarceration of the poor, especially poor people of color. In keeping with the “poor law” tradition of making a distinction between the “deserving” and “undeserving” poor, HIV/AIDS policy, too, has been enacted with a moralizing approach aimed at social control — e.g., banning the use of federal funds for needle exchange programs — rather than actually alleviating conditions of poverty, such as lack of housing and inadequate health care, experienced by low-income people. Needless to say, the “welfare reform” and other cuts in anti-poverty programs made in the midst of widening socioeconomic inequality which was masked by the economic upturn during the Bill Clinton administration, as well as further rises in numbers of the poor and uninsured during the economic downturn under the ensuing George W. Bush administration, negatively affected people with AIDS.
Moreover, the community mobilization of the late 1980s and early 1990s fractured with legislative and treatment breakthroughs in the mid-1990s. As the advent of highly active antiretroviral therapy (HAART) raised the hope of turning AIDS into a chronic but manageable illness, a class-based divide between those who had access to the best treatment available and those who were deprived of it became manifest. Rather than ensuring universal access to HAART and other state-of-the-art treatments, much of HIV/AIDS policy has shifted from tolerance to coercion (e.g. increasing criminalization and prosecution of HIV/AIDS transmission) in recent years — a response to the darker and poorer face of AIDS.
Health Care For All
To reverse the shift toward more and more punitive policies, as well as to effectively fight back the imminent cuts in AIDS-related services, it is more important than ever to remind ourselves of the ethical imperative of AIDS activism: health care is a right.
While many activists pushed for cure for AIDS, others worked toward a more universal goal of health care for all, especially during the first years of the Clinton administration. By the end of 1994, both initiatives appeared doomed. The same pharmaceutical companies that ACT UP had fought for years worked with the American Medical Association, the insurance industry, and political conservatives to generate a climate of fear that helped sink the proposed Clinton health-care plan. After the 1994 midterm election, the Republican Party took control of the 104th Congress, and universal health care was put on the back burner of the national policy agenda. At the same time, the state of California passed its “three strikes” law, which mandated automatic jail time for three-time offenders, regardless of the crime. The law set in motion a nationwide reallocation of resources from social services and education to criminal justice and the prison industry. In 1995, President Bill Clinton abandoned his health-care plan, declaring that “the era of big government is over.”
The struggle for universal health care, however, is far from over. In the fall of 1997, Project Inform, a San Francisco-based HIV/AIDS treatment advocacy group, released a position paper calling for a recognition that the U.S. system of health care delivery continued to be disaster, regardless of AIDS funding. The paper noted that while there had been a revolution in treatment for people with HIV/AIDS, there had been no similar innovative thinking about the future of AIDS services. Instead, many once-radical AIDS activists had been “bought off by the special programs and funding erected in response to our crisis-driven advocacy.” Much of AIDS funding was based on the idea of AIDS exceptionalism and powerful interest-group support for a unique continuum of services for people with HIV/AIDS. Yet people with other chronic illnesses, such as cancer, did not enjoy similar levels of funding and services. Without advancing the idea of national health care for all Americans, AIDS funding would not last.
While such programs may meet the individual needs of people in crisis, they do not solve the underlying problems that made AIDS such a crisis in the health care system. AIDS put the deficiencies of the system in the spotlight. But instead of fixing the system, we ended up settling for a literal side-show of programs, while leaving the system as deficient as ever. We may have gotten the basics of what was needed for some people with AIDS, but lost the opportunity to solve the problems on a larger scale.
Instead, Project Inform called for AIDS activists to work in coalition with advocates for people with other chronic diseases “to create solutions which can last a lifetime,” without leaving people with HIV/AIDS perched on the fragile political limb of annually renewed programs and services. With the Campaign to End AIDS, AIDS activists are pushing to see this policy agenda reach its fruition. (It all starts with registering at <www.endAIDSnow.org>.
Benjamin Shepard is co-editor of From ACT UP to the WTO: Urban Protest and Community Building in the Era of Globalization (Verso, 2002) and author of White Nights and Ascending Shadows: An Oral History of the San Francisco AIDS Epidemic (Cassell, 1997).
He can be reached at <benshepard@mindspring.com>.