On an otherwise quiet residential block, with a school on one side and a church on the other, a nightclub once drew crowds from all along the East Coast for some of Washington, D.C.’s most raucous parties. The center of the city’s black gay nightlife, the ClubHouse, would have hundreds of patrons wrapped in a line around the block waiting to get in on a given night. But in the early 1980s, the nightclub’s manager began to notice that certain regulars had stopped showing up. Many of them, it turned out, were starting to get sick. Some started dying. For many, it visibly marked the beginning of the AIDS epidemic hitting D.C.
Like other organizations in the city, the ClubHouse quickly responded to the AIDS crisis. Its staff collected money for patrons who were too sick to work and pay rent. The club also partnered with Whitman-Walker Health, a D.C.-area clinic focused on HIV and LGBTQ care, to raise awareness about HIV and AIDS. With city funds, Whitman-Walker started programs like syringe exchanges, which research showed could stymie the spread of HIV among injection-drug users by providing access to clean needles.
But as local organizations confronted the virus, the federal government often stood in their way. When Bill Clinton was sworn in to the presidency in 1993—after roughly 200,000 people diagnosed with AIDS in the U.S. had died—he launched a far more rigorous federal response to the epidemic than his predecessors had, dramatically increasing funding for research, treatment, and care. But the ramped-up efforts to stifle the epidemic left some communities behind when political fights got in the way. In 1998, Clinton upheld a Reagan-era ban on the use of federal funds for needle exchanges amid unsubstantiated concerns that those programs would promote drug use. That same year—when the epidemic’s death toll had reached more than 400,000—Congress, which oversees Washington, D.C.’s budget, banned the city from using its own municipal funds for syringe exchanges.
The D.C.-specific ban lasted for nine years. During that time, the District suffered the highest rates of HIV in the country, while other cities that were allowed to fund their own exchanges saw drops in transmissions caused by intravenous-drug use. By the time the ban was lifted, the nation’s capital had reached a higher rate of HIV per capita than that of West Africa.
At the height of the AIDS crisis, Washington was a majority black city. The black share of the population has since dipped below 50 percent, but black residents are still disproportionately affected by HIV today: Recent data from the D.C. Department of Health showed that eight out of 10 young residents diagnosed with HIV are black. This sobering statistic reflects a broader trend when it comes to racial disparities in HIV diagnoses in the United States. According to the Centers for Disease Control and Prevention, black people, who comprise about 13 percent of the population, accounted for 43 percent of HIV diagnoses in 2017. Hispanic and Latino people accounted for 26 percent of new diagnoses, while making up 18 percent of the population.
U.S.-government-backed programs have profoundly changed the landscape in the global fight against the epidemic, saving countless lives. But from the start of the AIDS crisis to today, the government also has failed to treat all communities equally. At times when federal policies have caused spikes in infection rates, people of color, LGBTQ people, and the poor have tended to suffer most. D.C.’s battle over syringe exchanges was a case study of this disparity—and its legacy still lingers.
Whitman-Walker, the LGBTQ-focused clinic that partnered with the ClubHouse, was on the front lines of the AIDS crisis in D.C. It was one of many clinics that had cropped up across the country in the 1970s as part of a growing LGBTQ health movement, which was galvanized by the Stonewall riots and the broader LGBTQ liberation movement. At the time, “most doctors and most hospitals and clinics would see homosexuality as an illness,” says Lawrence Deyton, a senior associate dean for clinical public health at George Washington University and a founding volunteer at Whitman-Walker. “It was hard to find care that wasn’t really laced with stigma.”
Deyton says he experienced discrimination in the health-care industry himself in this period. When he visited a doctor for a sore throat and disclosed that he is gay, the doctor referred Deyton to a psychiatrist, even though this was shortly after the American Psychiatric Association had declassified homosexuality as a mental illness. “That really kicked me into gear and into realizing, Oh my God. Here I am, this open, proud gay man, yet this whole medical establishment doesn’t get it yet,” Deyton says.
Because the U.S. has an employer-based health-care system, people feared that their employer could find out about a doctor visit for a sexually transmitted disease when it was billed to their insurance, and that the consequences of the stigma of certain diseases could spill over into the workplace, says Cornelius Baker, who served as Whitman-Walker’s executive director from 1999 to 2004. “You weren’t just revealing that you have a health condition. You were revealing a lot about your life,” he says.
As Whitman-Walker grew, it became a part of a network of organizations that covered services the U.S. government didn’t. While the government worked with and financed many of these clinics, it set limits on what it would support, and pulled funding from certain programs that became too politically sensitive. Many of those programs disproportionately helped the marginalized groups that the government was trying to reach through these clinics in the first place—LGBTQ people, people of color, and LGBTQ people of color in particular. When it came to needle exchanges, for example, black and brown people across the country were, and continue to be, likelier to contract HIV through injection-drug use than their white counterparts.
During the Clinton administration, many major public-health officials—ranging from the surgeon general to the heads of the Food and Drug Administration, the National Institutes of Health, and the CDC—spent years trying to persuade the president to lift the Reagan-era ban on federal funds for needle-exchange programs. “There was no question that the science was clear,” says Donna Shalala, who served as Clinton’s Secretary of Health and Human Services. But, she says, the perception that needle exchanges promoted drug use worried some Democrats in Congress that their party would appear to be soft on drugs if it funded the programs. Ultimately, Clinton refused to remove the ban.
“The president decided not to do it for political reasons,” says Shalala, who now represents Florida in Congress. She stood by the scientific evidence when she had to announce the decision more than 20 years ago. “One of the calls we got from the White House was, ‘Why doesn’t Shalala simply say we need more studies?’ And I said, ‘Absolutely not. We don’t need any more studies.’” A spokesperson for Clinton maintains that the administration acknowledged the science when it made the decision, and that it wanted local communities to choose whether to fund their own exchanges.
When Congress subsequently barred D.C. from financing its own syringe exchange, Shalala and other proponents of the program were dismayed by what it would mean for the communities that stood to benefit from it most. “There just weren’t people who were willing to fall on their swords to say, ‘We shouldn’t be treating the District differently from any other community,’” says Jeffrey Levi, who served as the deputy director of the White House Office of National AIDS Policy from 1994 to 1996. Because of its status as a federal district, D.C. has limited budget autonomy. Congress has a say in how the city runs, which Levi contends makes its residents fall prey to national politicians pushing policies on them without local input. In this case, those who bore that burden were predominantly gay, black, or poor.
Shalala derides the decision as “pure racism.” Todd Summers, who served as Levi’s successor, told me that “it was one of the saddest moments of my time with the administration. Frankly, it was one of the saddest moments of my professional life.”
A two steps forward, one step back approach to HIV and AIDS—significant advancements in public health that nonetheless leave some of the most marginalized groups behind—was not unique to D.C. or to Clinton’s tenure. For as long as America has grappled with the disease, the federal government has taken actions that have allowed a president to envision the end of HIV and AIDS while simultaneously doing things that make the eradication of the virus a near-impossible task.
Clinton’s predecessor, George H. W. Bush, signed the Americans With Disabilities Act into law, which prohibited discrimination against people living with HIV/AIDS in the health-care system, and also famously passed the Ryan White CARE Act, which provided treatment and services for HIV-positive people. But like Ronald Reagan, Bush ignored much of the World Health Organization’s advice on other methods to reduce the spread of the virus, and often categorized prevention strictly in terms of personal responsibility. “I’m in favor of behavioral change,” he once said. “[AIDS] is a disease where you can control its spread by your own personal behavior.” This focus on behavior rather than funding for preventative measures such as safe-sex programs would end up harming those most affected by HIV and AIDS at the time: gay and bisexual men.
Clinton’s successor, George W. Bush, is often praised for his administration’s efforts to fight HIV and AIDS in the global South, particularly in Africa. But in the United States, the rates of HIV worsened during his tenure. He continued the bans on both federal and D.C.-specific funds for needle exchanges, which contributed to a worsening epidemic in Washington, particularly among African Americans. He also supported funding for “abstinence-only” education programs that downplayed the role of condoms in prevention. (The WHO says that condoms have at least an 80 percent success rate in preventing transmission of HIV, and studies show that condom-distribution centers do not increase sexual activity.)
When he left the presidency, Clinton continued his work combatting HIV and AIDS around the world. And he eventually expressed regret over his decision on syringe exchanges. When D.C. was finally able to fund its own needle exchange again, in 2007, the city saw an 80 percent drop in HIV infections through injection-drug use. But the ban on federal funds continued through most of Barack Obama’s tenure, other than during the first few years of the administration when Obama repealed the ban, only to have Congress reinstate it.
Toward the end of Obama’s presidency, more lawmakers, including the traditional conservative opponents to needle exchanges, began embracing the program as the opioid epidemic ravaged urban and rural communities alike. After a new HIV outbreak in Scott County, Indiana, a Republican-led bill, signed into law by President Obama in 2016, finally lifted the ban on federal funds for needle exchanges. But the time it took lawmakers to come around to reversing the ban cost some of the most vulnerable people their lives.
It often takes time for politics to change. When Donald Trump proposed slashing the budgets for global HIV- and AIDS-relief programs by $1.1 billion two years ago, experts warned that such a dramatic cut could cost more than a million lives around the world and undermine any progress made in the U.S. And yet earlier this year, after he requested a $291 million increase in domestic HIV-related spending and pledged to “defeat AIDS in America and beyond,” the president called for even deeper cuts in funding abroad.