Thursday, December 01, 2011

Lessons of the War*

We aren’t supposed to use the language of war when talking about HIV anymore.

In January 2011, UNAIDS published its latest set of terminology guidelines (PDF). The guidelines are very explicit:

Avoid using words such as ‘fight’ and other combatant language, e.g. struggle, battle, campaign, or war, unless in a direct quotation or because of the specific context of the text. For example, possibly a poster or very short publication designed to have high impact would make such use appropriate. Alternatives include ‘response’, ‘management of’, ‘measures against’, ‘initiative’, ‘action’, ‘efforts’, and ‘programme’. One rationale for this is to avoid transference from the fight against HIV to a fight against people living with HIV.


I “get” that. Truly I do. But, from my perspective, this is—and always has been—a war.

It has been a war against ignorance, indifference, and prejudice. A war against shame and violence committed against both the body and the human spirit. A war against a virus that is one of the wiliest and deadliest we’ve ever encountered.

I believe we will win that war eventually. We will eradicate HIV from the planet, just as we have eradicated smallpox and—largely—polio.

But today is the 24th observance of World AIDS Day--and, for now, we are still fighting.

For a long time, HIV marched through the world like General Sherman marched through Georgia. It laid waste to everyone in its path, and there was nothing to stop it.

The first glimmers of a successful resistance came in 1987, when the U.S. Food and Drug Administration (FDA) approved zidovudine (AZT) as the first treatment for HIV infection. As I noted in my post on June 5, AZT alone could only slow the progress of HIV infection. The virus was too strong for only one drug to keep it in check—over time, it simply mutated into a drug-resistant form and renewed its unrelenting assault on the human immune system.

It would take the combination therapy that became available in 1996 to finally stop HIV’s hegemony.

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And that brings us to the question: What have we learned from 30 years of AIDS? What are the “Lessons of the War”?

The first one is this…

Crumbling is not an instant's Act
A fundamental pause
Dilapidation's processes
Are organized Decays.

Tis first a Cobweb on the Soul
A Cuticle of Dust
A Borer in the Axis
An Elemental Rust—

Ruin is formal—Devil's work
Consecutive and slow—
Fail in an instant, no man did
Slipping—is Crash's law.

---Emily Dickinson

What happened did not happen in an instant. It happened in the context of prejudice and indifference—those “cobwebs on the soul.” It happened over years of “organized decay,” when the people who should have stepped up to help—the government, healthcare providers, churches, and even families and friends—either hung back or deliberately turned away. As in so many other human tragedies, “Devil’s work” was supported, furthered, and expanded by people who saw themselves as good, decent individuals—and by systems that were supposed to serve and protect.

We learned what happens when disadvantaged groups fall prey to a deadly epidemic.

Not much...at least until people with privilege begin to succumb. Until AIDS killed a high-profile celebrity with deep pockets and a personal connection to the White House, the Centers for Disease Control and Prevention (CDC) and the National Institutes of Health struggled to find the most basic funding for AIDS research and treatment. Almost no one cared about gay men or injecting drug users for a long time--it would take the fear of the epidemic moving into the general population for people to start paying attention.

Plus ça change, plus c'est la même chose. As the epidemic has become more and more concentrated in the African American and Latino communities—and among men who have sex with men (MSM) in those communities—the epidemic has faded, once again, from public consciousness. This appears to be one lesson we forget with regularity...

We learned that sexism never takes a holiday.

Women were almost completely missing from the AIDS equation for over a decade (if you don’t count prostitutes, who were seen as “vectors” for infection and vilified as such). AIDS in women often presented as gynecological symptoms, including pelvic inflammatory disease and recurrent, severe vaginal yeast infections. But the CDC case definitions for AIDS were built on the opportunistic infections that were common in men—and CDC did not change those definitions to include a condition common among women with HIV (invasive cervical cancer) until 1993.

Because the CDC definition was adopted as an eligibility criterion by U.S. government public assistance programs (including the Social Security Administration), this meant that many women—the majority of whom were poor women of color—were never able to get the assistance they needed. Their final days were made even harder because the system was geared to men.

We learned that it is incredibly difficult to change people’s risk-taking behavior, long-term—especially when it comes to sex.

In the beginning, the gay community did not want to believe that frequent sex with multiple partners could be the cause of AIDS. To believe that was to threaten the world they had created to protect themselves from all those “fine Christians” who hated them and wanted them dead.

And really...who could blame them? Sex was fun, usually free, and their variety of it didn’t lead to unwanted pregnancies. Antibiotics would take care of the multitude of sexually transmitted infections (STIs) they got, and no one got hurt. At least until HIV showed up...

Once it became clear that HIV was sexually transmitted, condom use by MSM skyrocketed. As a result, the infection rates among gay men fell dramatically in the late 80s and early 90s. But HIV incidence rates among MSM have been creeping up slowly again for the last decade. Among young Black and Latino MSM, the increases are dramatic.

We now have an entire generation of young people who do not remember a time before antiretroviral drugs (ARVs), and who have the (very mistaken) notion that “HIV is no big deal anymore. All you have to do is take some pills.”

When I am asked to speak about the HIV/AIDS epidemic, people frequently want to know “Why do people keep getting HIV? We all know what causes it—why don’t they protect themselves?” Given that there are an estimated 50,000+ new HIV infections in the U.S. each year (and 2.5 million new infections worldwide), it’s a fair question—despite the judgmentalism that is usually part and parcel of the inquiry.

My best answer is to compare sexual behavior to eating. Sex and eating are two of the strongest biological drives that humans experience. In our culture of affluence, many of us struggle to eat in a healthy way and to maintain a healthy weight. We take a look at that tempting piece of chocolate cake, or the second helping, and we tell ourselves “I’ll just have that now, and I’ll be ‘good’ the rest of the day/week.”

But we rarely do. It is hard to deny ourselves things that bring us pleasure and comfort--and both sex and food do that. In addition to perpetuating the species, those drives also serve to connect us to others and to meet a myriad of emotional needs, as well as the physical ones.

I am grateful to work in the field of HIV prevention, and I believe very strongly in what I do. But I am coming to believe that only a vaccine for HIV will end the pandemic for good. People want to be “good”--but, for a whole variety of reasons...many of them deeply emotional...it is difficult to be vigilant all the time.

The next time you have that piece of cake, or that second helping against your better judgment, I hope you will stop and think a little more kindly of those who struggle with the same temptation in the bedroom instead of the kitchen...

On a more positive note...

We learned that average people can make a difference on public policy and healthcare if they are loud and organized.

People living with HIV/AIDS forever changed the way we deliver healthcare in this nation. They demanded the opportunity to be partners in their own care. When no one else would help them, they created their own networks of support.

Today, we need more people like those in the activist group ACT UP, who embarrassed the Federal government to the point that it finally acted to fund research, care, and treatment initiatives, and to open access to medications and clinical trials. I have hopes that the Occupy movement will be the latest incarnation of ACT UP--and I dream that, one day, people will take to the streets to demand decent healthcare for EVERYONE in this country.

We learned that government leadership is crucial in the face of a pandemic.

A key role of government is to protect citizens—and that includes protecting their health. We call it “public health” for a reason.

There are very few government heroes in the story of AIDS--but a couple stand out for me, and you may be surprised by who they are.

Dr. C. Everett Koop, the 13th U.S. Surgeon General, did a very brave thing. Like his boss, Ronald Reagan, he said nothing about AIDS for years--but when he finally decided to speak, he changed the game completely.

In October, 1986, Koop released a publication entitled The Surgeon General’s Report on Acquired Immune Deficiency Syndrome. To get the report past the White House without going through the usual clearance process--a process he knew would gut the very frank discussion of AIDS he wanted to have--he printed 1,000 copies on expensive paper, complete with the silver seal of the Public Health Service embossed on the front. He was scheduled to review it with the Domestic Policy Council and he gambled that the Council members wouldn’t want to spend the money to reprint such a fancy-looking report. (I could admire him for that alone! ;-) He also numbered the copies and told the Council that he would be picking them up at the end of the meeting to avoid any press leaks.

His gamble paid off--the review was cursory and no one complained. Not then, anyway...

The staunchly conservative Koop, who had been nominated for Surgeon General because of his leading role in the anti-abortion movement, shocked and dismayed his conservative colleagues by addressing the problem of AIDS purely in public health terms, without the political or religious rhetoric that had muddied the waters in the past. He advocated for AIDS education “at the earliest grade possible” for children. He was blunt in pushing condom use.

And possibly most impressive of all (given his background), he came down hard against calls for mandatory HIV testing. He was able to explain, clearly and well, why any push for large-scale HIV testing must be accompanied by guarantees of confidentiality and nondiscrimination.

While it took him longer than it should have to address the issue in the first place, when Dr. Koop took it on, he didn’t flinch. He set aside the ideology that got him his job and attempted to quell the worst of the AIDS-related hysteria. He made it possible for the American public to have a reasonable conversation about HIV/AIDS, and helped to begin the still-unfinished process of tackling the stigma and discrimination associated with HIV. For those things, I consider him a leader and a hero.

The other hero is a most unlikely one, given that I am the one doing the designating. I cannot think of any other thing on which I agreed with him--but George W. Bush showed the kind of leadership on responding to HIV/AIDS that represents the very best of what government can do.

By his support for the creation of the President’s Emergency Plan for AIDS Relief (PEPFAR) and his commitment of $15 billion over the first five years of that program (2003-2008), George Bush saved literally millions of lives.

There are many details over which I could argue (focus on abstinence, ignoring harm reduction techniques for injecting drug users, etc.), but the fact remains: without President Bush’s active support for, and commitment to, PEPFAR, the AIDS pandemic would have been immeasurably worse.

Thanks to his leadership, there are babies and children all over the world who are HIV-free, because their mothers got the treatment they needed to keep from passing the virus during pregnancy, labor, or delivery. There are millions of people who have access to affordable antiretroviral drugs, and who are now leading productive lives.

I predict that PEPFAR will be the only positive legacy of George Bush’s presidency--but it is a legacy of which he can justly be proud.

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Today is the 24th observance of World AIDS Day. I love what I do--and I am glad to have an opportunity to honor those who lost the fight, and to look forward to the creation of an "AIDS-free generation," which is now the official goal of the U.S. Government, in the future.

But I wonder...will we finally learn the lessons of the war?



*The title of this post comes from a six-part poem of the same name by WWII English poet Henry Reed. It’s funny and dark (with flashes of beauty and brilliance) all at the same time—a case of laughing to keep oneself from crying…or screaming. It reminds me of the grim humor in which so many people living with, or affected by, HIV have to engage in order to find the courage and strength to keep fighting the battle.

You can read all six parts of Lessons of the War here.