No One Should Die From AIDS

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From the 19th International AIDS Conference, looking at how far we've come and how far we have to go before an AIDS-free generation

AIDSribbonMAIN.jpgReuters

In 1959, the year Dinah Washington won a Grammy for "What a Diff'rence a Day Makes," scientists isolated a new microbe from the blood of a man in what is now the Democratic Republic of the Congo. They had no idea what an extraordinary difference that organism would make in the history of mankind.

The same year, Robert C. Gallo had just finished a bachelor's degree in biology at Providence College. He was determined to become a biomedical researcher, driven by a strong intellect and deep sorrow to investigate leukemia, the blood cancer that had killed his beloved little sister Judy, when she was only five years old and he was not quite twelve.

Gallo had no way of knowing the expertise he was to accumulate in the coming years would enable him in 1984 to prove that the human immunodeficiency virus (HIV) -- the microbe first isolated in 1959 -- was the cause of the fatal disease called AIDS, and to develop the first blood test to detect HIV infection.

Neither Gallo nor anyone else had the slightest inkling that AIDS -- first identified in the United States in 1981 among young gay men in Los Angeles, New York and San Francisco -- would become the greatest and deadliest pox on humanity in modern times.

***

People working on HIV/AIDS over the past three decades often remark about what they call "AIDS time" -- the way that so much happens in compressed spaces of time. In the early years, and still today for far too many, days can seem like eternities when the only certainty is that, a disfiguring, terrible death awaits at the imminent end of a life cut short by AIDS.

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Many young lives were already being foreshortened at the time of the Third International AIDS Conference, in June 1987. Before this year, that was the last time the global gathering of scientists, medical professionals, traditional healers, family members, activists and people infected with HIV was held in Washington, D.C. At that point, 36,000 Americans had been diagnosed with AIDS. Twenty-one thousand were already dead, and "only" 51,069 cases had been identified worldwide.

I reported on that conference for Washington City Paper, at the beginning of my journalism career. Two years before my own first (negative) HIV antibody test, I recounted my experience of talking outside the Washington Hilton, where the meeting was held, with my then ex-lover. Bill had tested HIV-positive the year before. A positive test back then, when there was no effective treatment, meant certain death.

"Hearing the angry shouts," I wrote, "considering all I'd heard in symposia that day about gay sexuality and seropositivity, I looked at the man who had shared my bed for a year and a half, and remembered the fear and pain we'd borne together. I realized again how personal an issue AIDS really is."

***

In 2005, three weeks to the day after I turned 47 -- on the October 27 birthday of one of my dearest (and, by then, deceased) friends -- my doctor called to give me the results of some routine blood work. Eight little words turned my life upside down. "I have bad news on the HIV test," he said.

Reporting on the Nineteenth International AIDS Conference, held in Washington, D.C. last month, nearly seven years after my own diagnosis but still exceedingly healthy thanks to antiretroviral medication, I looked and listened as though through new eyes and ears.

Today I possess the understanding and compassion that comes only from firsthand knowledge of the terror of an HIV diagnosis; the fear that side-effects of the very medication I need to stay alive will themselves damage my health in a sort of pyrrhic medical victory. The resilience it takes to hold my head up when friends, potential partners, and total strangers condemn and disappear because of their misguided belief that microbes mean something more than that we are all fragile creatures in a dangerous world.

Twenty-five years since I reported on that earlier AIDS conference in Washington, the federal Centers for Disease Control and Prevention report that an estimated 1,178,350 Americans were living with HIV. That was at the end of 2009. That year alone, 42,959 were estimated to be newly diagnosed as HIV-positive in the forty states and five U.S. territories that report the diagnoses by name. By then, 617,025 Americans had already died from AIDS. 

The Joint United Nations Programme on HIV/AIDS (UNAIDS) estimates that since the start of the global pandemic, sixty million people worldwide have been infected with HIV; thirty million have died.

***

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For one short week in July, you could easily have believed the world had finally awakened to the reality of the continuing plague. Journalists from all over the world descended on the Walter E. Washington Convention Center to report on the scientific presentations and protests that don't much interest editors most of the rest of the time.

Every media outlet in Washington -- except for, notably, Washington City Paper -- featured either cover stories, special sections, or daily coverage. Not surprisingly, they mostly focused on the big-name speakers: former President Bill Clinton, Secretary of State Hillary Clinton, and former First Lady Laura Bush among them. Other dramatic subjects naturally appealed to them, such as "Berlin Patient" Timothy Ray Brown, the first and only person to have been "cured" of HIV infection after complex and expensive bone marrow transplants and a reconstructed immune system.

For this reporter, however, the real news wasn't to be found in the platitudes and boasts about how much the U.S. government has done, or which global organization has received the most funding to pay its legions of highly paid consultants who shuttle from one conference to another to talk about all they've done to fight AIDS.

The real news was in the stories of hope and strength from people around the world who live courageously with a deadly, highly stigmatized virus; of the creative approaches to educating young (and not-so-young) people about how to avoid HIV while enjoying healthy and satisfying sex lives; of individuals seeking to be true to themselves while living in societies that insist they are less than fully human because nature happened to make them female instead of male, gay instead of straight, black instead of white.

Take the story of Angeline Cecilia Jackson. The young woman told me that in her home country of Jamaica, the police commissioner says they are not a homophobic culture. Meanwhile, it's not uncommon for police themselves to frame gay men when someone murders one of their comrades. Another young woman, from Kenya, told me about visiting an Anglican church where the priest himself threw her out. "Jesus doesn't love you," he said. Attorney Priti Patel, deputy director and HIV program manager at the Southern Africa Litigation Centre (SALC) in Johannesburg, described cases in Namibia of HIV-positive women who were coerced into signing papers -- while they were in labor -- authorizing their subsequent sterilization. Although the Namibian High Court judge on July 30 dismissed the argument that they were discriminated against because of their HIV status, he ruled that their human rights were violated. 

"There is also a huge problem of self-stigma among HIV-positive women," said Patel, "and a huge lack of awareness of their own rights."

Of course discrimination and violence against women and HIV-positive people aren't always as blatant or physical as forced sterilization. Here in the United States, for example, Karina L. Walters, a professor of social work at the University of Washington and an enrolled member of the Choctaw Nation of Oklahoma, noted that Native American women are 2.5 times more likely to have HIV than white women. They are also diagnosed later on average, often after it has seriously damaged their immune system. She said 85 percent of "two-spirit" (lesbian or bisexual) Native American women have experienced sexual assault. And although most Native women reside in urban areas, not on reservations, less than two percent of Indian Health Service funding goes to urban centers.

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Like Native Americans and millions of people living in the former European colonies among the most HIV-afflicted areas of the developing world, Anglican priest Albert Ogle, president of the San Diego-based St. Paul's Foundation for International Reconciliation, said, "Lesbian, gay, bisexual and transgendered (LGBT) people share the experience of being colonized by the dominant heterosexual culture." He added, "The spiritual damage of colonialism can't be fully undone, but it can be redeemed."

***

When President George W. Bush launched the President's Emergency Plan for AIDS Relief (PEPFAR), in 2003, only 50,000 people in hardest-hit sub-Saharan Africa, the epicenter of the global pandemic, were receiving antiretroviral treatment for HIV/AIDS. Funding from PEPFAR, the largest global health initiative in history, today provides treatment for more than 4 million people around the world.

In a Washington Post op-ed column on the final day of the AIDS conference, Eugene Robinson -- no fan of President Bush -- said it was Bush "more than any other individual, who turned the tide." The PEPFAR program," he said, "is a reminder that the United States can still be both great and good."

Beginning in 2008, HIV co-discoverer Robert Gallo has called for a domestic PEPFAR program modeled after the highly successful international one. Writing in the Washington Post on July 20, 2012, Gallo reiterated his call for a PEPFAR-like program that focuses on the twelve U.S. cities in which 50 percent of HIV-positive Americans reside. That includes the D.C./Baltimore metropolitan area. The organization would coordinate efforts, share best care, support practices, improve services, and control costs.

"When my lab showed that HIV was the cause of AIDS and developed the blood test for the virus in 1984," wrote Gallo, "I never would have imagined that in 2012 the infection rates in U.S. inner cities would be so high. That's why I am calling on President Obama and the U.S. Congress to create a domestic PEPFAR, to take full advantage of the power of diagnosis and treatment as part of a comprehensive prevention strategy to move us toward Obama's vision of an AIDS-free generation."

Responding to the repeated call for "treatment as prevention" heard during the AIDS conference -- based on the principle that HIV-positive individuals who are taking antiretroviral treatment are far less likely to spread the virus -- Gallo added, "We have a long way to go before we fully achieve the hope of treatment as prevention. But we have to start somewhere. Given all we now know about treatment, there is no reason for anyone living in the industrialized world to die from AIDS."

As a journalist reporting on AIDS since the mid-eighties, as a man living with HIV since the middle of the twenty-first century's first decade, the strongest word I can think of in response to Dr. Gallo's statement is this: Amen.

Inset photos: Reuters

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The author of Victory Deferred, John-Manuel Andriote has specialized in HIV/AIDS reporting since 1986. His research materials, correspondence, and recorded interviews are part of a special collection curated by the Smithsonian.

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