CHAPTER 14

REVIVAL

1997–2004

IT can be hard to rise from the dead.

The miracle of combination therapy helped people stop dying from AIDS, but it didn’t offer a road map for how to start living again. Learning how to live without the threat of imminent death came with a completely different set of challenges and struggles. Just as with veterans who return from war, there were adjustments to make after enduring a protracted life-and-death struggle. No one regretted the arrival of protease inhibitors and ART. But the prospect of long-term health literally forced survivors to consider an unexpected question: Now what?

Many people had prepared so thoroughly for death that they had liquidated their assets. That house? The life insurance policy? Money in a retirement account? All of them could be gone. People had often sold everything in an effort to pay for the monumental costs of their illnesses. It was as if they’d settled their estates from the living side of the grave. They had done so confidently because everyone who was HIV-positive died sooner or later. So they had planned for it.

And then they stopped dying.

DEATHS FROM HIV/AIDS PRE-1981 TO2001
YEAR	DEATHS
PRE-1981	30
1981	130
1982	466
1983	1,511
1984	3,526
1985	6,996
1986	12,183
1987	16,488
1988	21,244
1989	28,054
1990	31,836
1991	37,106
1992	41,849
1993	45,733
1994	50,657
1995	51,414
1996	38,074
1997	21,846
1998	18,148
1999	16,762
2000	14,499
2001	8,998

CDC data analysis conducted by Dennis Osmond, University of California at San Francisco. An additional 360 undated deaths brings the total for this period to 467,910.

Survivors also had to reimagine relationships. So did friends, family members, and lovers, some of whom had been on deathbed watches until the Lazarus effect kicked in. There was joy in knowing a person would survive, but there was also a challenge in transitioning from a prolonged state of distress to one of normalcy. Those who had been ill resumed everyday acts that they’d previously abandoned, such as having their teeth cleaned and buying new clothes. But they also found themselves breaking off relationships where preparing for death had become a central reason for staying together.

Surviving was hard in other ways, too, particularly for those who had witnessed the greatest losses. “Like any war, you wonder why you came home,” Peter Staley later observed. Survivor’s guilt, it can be called, or, as Steve Bolerjack suggested in 2017, not necessarily guilt but “survivor’s bafflement.” Many people had barely had time to mourn because so many friends and loved ones had died for such a long time. It was particularly painful to consider the individuals who had died in the years just before the arrival of protease inhibitors and ART. If only they’d been able to hang on a little longer.

It wasn’t just the infected who’d experienced the trauma of a pandemic. So had HIV-negative activists, family members of people with AIDS, and medical professionals who’d cared for patients. They’d all witnessed unnatural living and dying. “I remember their names,” Los Angeles physician Michael Gottlieb recalled of his earliest cases during a 2016 retrospective about AIDS. “I remember what they looked like. I remember them in greater detail than patients I saw last week.” “I miss so many people so bad,” poet and feminist Dorothy Allison observed during a 1998 interview. Steve Bolerjack, whose record of dead friends grew to more than one hundred names at the height of the pandemic, occasionally still looks at his old list. “It jogs my memories, helps me remember people who are gone. But when I die, of course, those stories will disappear.”

AIDS historian and activist David France has written about how, “An incomprehensible thing happens to the human mind when it is folded in fear and death for so long. It causes mysterious wounds and spurs unexplainable behaviors.” Having gotten back their lives, many survivors went on to have them fall apart. They developed depression. They numbed old pains with alcohol and drugs. Crystal meth ensnared many survivors, including, for a time, TAG members Spencer Cox and Peter Staley. Some of the youngest activists and survivors had skipped normal phases of life development, such as going to college and pursuing careers. Fighting AIDS was what they’d done. That meant they’d missed the natural on-ramps for adulthood and didn’t have self-sufficient patterns to fall back on.

Combination therapy presented its own challenges. It didn’t take long for the HIV-positive to figure out that, even with new medications and ART, they would remain in a constant battle with the virus. “To proclaim that anyone with HIV is familiar with its four Ds (debilitation, depression, destitution, and death) is of course, gross understatement,” wrote Bolerjack in a 2001 column he titled “HIV lite.” “With the exception of actual death, most poz people contend with one of these factors every day.”

Keeping ahead of HIV required so-called poz people (as in HIV-positive) to follow an intense regimen of care. Dozens of pills had to be taken with precision timing every day. HIV lay perpetually at the ready, waiting for a lapse in defenses, a chance to outwit a drug. Whenever it did, that medication could no longer be a part of the arsenal of potential weapons. Get too sloppy, and doctors ran out of options for keeping the virus at bay.

Stephen Gendin’s death in 2000 at age thirty-four reinforced that point. Gendin had helped his friend Sean Strub found POZ magazine. He’d become widely known as a POZ writer and through his AIDS activism. Gendin had experimented aggressively with medication blending in the years leading up to ART, but his treatment plan may have backfired. His version of HIV seemed to have evolved until it could outsmart every possible drug combination, and he’d had a fatal heart attack while being treated for AIDS-related cancer.

Even when people were able to suppress the spread of HIV within their bodies, they faced countless troubling side effects. Some consequences were humbling, such as the way protease inhibitors sapped body fat away from desirable places, like the face and buttocks, and deposited it into what came to be known as Crix belly (named after the drug Crixivan) and protease paunch. This fat redistribution, known as lipodystrophy, was among the more benign side effects. Worse were the explosive bowel movements that came with almost no warning; those who experienced it have characterized it as projectile diarrhea.

Medications could cause nerve damage, elevate cholesterol levels, and put extra stress on organs such as the heart, liver, and kidneys. Before long, the pillboxes of the HIV-positive contained drugs for treating conditions caused by side effects of their HIV meds, and then medications that treated the side effects of the additional medicines.

The population of infected survivors became its own long-term study. Drug manufacturers had tested drugs to see if they worked, and they’d tested them for unrelated reactions. But no one knew what the substances might do to people who took them for decades. Nor did they anticipate all their unintended consequences. A reverse transcriptase inhibitor called Sustiva, for example, turned out to trigger suicide-inducing depression, especially among people already susceptible to dark moods. Dropping it from the pillbox literally pulled some people back from the brink of self-harm.

Living with HIV/AIDS took all the discipline, tolerance, awareness, and fortitude required for managing any chronic illness, but multiplied many times over. It also took a lot of money, particularly before the Affordable Care Act of 2010 made it illegal for health insurance providers to exclude potential customers from coverage because of preexisting medical conditions. Even for people lucky enough to have health insurance, navigating the system of deductions and benefits could be daunting. Finding and maintaining relationships with doctors, including those specializing in the long-term care of the HIV-positive, could be challenging, too. People with solid educations, financial reserves, and personal support systems in place held the best prospects for long-term survival. But for the many who didn’t benefit from those resources, and especially for those who also faced the burdens of racism and poverty, managing HIV could be overwhelming.

Medical care was the core issue, but there were other challenges to living HIV-positive, too. Ongoing social stigma. The minefield of maintaining physical relationships in a world that judged the safety of sex by whether or not someone’s lab results carried a plus sign or a minus mark after the letters H-I-V. The challenges of holding a job while managing a chronic illness. The risks of developing a major infection from someone else’s everyday germs. And on and on and on.

It could be hard to rise from the dead.

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Even as the fight against HIV had intensified in the United States, the virus continued its march around the globe. Invariably, it gained an almost unshakable toehold before countries began to react. As it had in America, the virus struck marginalized and powerless segments of society first. Hemophiliacs in Japan. Prostitutes in Thailand. Intravenous drug users in Russia. It exploited the most vulnerable, and then spread from there.

HIV hitchhiked with truck drivers who visited brothels along the long-haul routes of Africa and India. It traveled with marauding soldiers in war-torn regions of Africa. It accompanied migrant workers as they followed seasonal work across borders. Wherever it went, by the time leaders realized that other segments of the population were at risk, the virus had spread so widely that it seemed virtually impossible to extinguish.

Residents of Bossangoa in the Central African Republic assemble for voluntary HIV testing, April 14, 2014. This country is one of many actively working to identify, contain, and treat infections in order to prevent the spread of HIV and reduce AIDS-related fatalities.

Religious and cultural conservativism slowed response overseas, as they had in the United States. Political and regional instabilities also made it hard for some foreign governments to mount treatment and prevention programs, as did poverty in the developing world. By 2016, thirty-five years into the pandemic, more than 35 million people around the globe were living with HIV/AIDS. An equivalent number had died since the outbreak’s emergence in 1981.

Late in the twentieth century, various international efforts to combat HIV began to coalesce behind a United Nations effort known as UNAIDS. The move reflected a growing realization that the virus wasn’t just an international health threat; it posed a threat to global security, too. At the beginning of the twenty-first century, an international public/private initiative known as the Global Fund to Fight AIDS, Tuberculosis and Malaria was created to serve as a key fundraising source for UNAIDS. The United States became a major contributor to the fund starting in 2004 through a program known as PEPFAR—the President’s Emergency Plan for AIDS Relief.

PEPFAR began during the presidency of George W. Bush, the son of the man who was living in the White House during the first Ashes Action. It has continued under subsequent administrations, and Congress has appropriated billions of dollars toward the international effort. These funds have supported efforts to train healthcare workers, conduct HIV testing, counsel people who are HIV-positive, prevent the transmission of HIV during pregnancy, and underwrite the costs of providing medications to impoverished populations.

PEPFAR, the Global Fund, and UNAIDS have had a tremendous impact on curtailing the spread of HIV and saving lives. More than half of the world’s HIV-positive population now receives combination therapy, and prevention programs have begun to slow the spread of the virus around many parts of the globe. Efforts are now underway to expand that work until 90 percent of the world’s infected population has been identified and is being successfully treated to the point of viral suppression. Should these goals be achieved by 2020, researchers predict an outcome for 2030 that was once considered unimaginable:

An end to the AIDS pandemic.