Have you ever been in such a fury that you can’t see straight? That despite your best efforts, you know your anger is spilling over, attaching itself to anyone and everyone in sight? That you better get yourself under control or else … or else you might say or write something that you regreteven if it’s true? After listening to much of the proceedings at the recently concluded 17th International AIDS Conference in Mexico City, I’m overwhelmed with “outrage and anger,” as one of the participants, a longtime HIV/AIDS advocate, characterized his own state of mind upon his return last week.
It started on Day One of the confab, which gathered more than 22,000 researchers, activists and policy wonks, but just one national leader from a big countryformer president Bill Clinton. The big story on opening day was The New York Times report that “The United States has significantly underreported the number of new H.I.V. infections occurring nationally each year.” The culprit? The Centers for Disease Control and Prevention, the federal agency responsible for providing accurate statistics, which now tells us that, oops, they counted wrong for the past several years. Instead of 40,000 new HIV infections occurring each year in the U.S., the true number was a staggering 56,300, more than 40 percent higher than previously reported.
For years, as a journalist I have taken the CDC at its word when it reports HIV/AIDS statistics for the U.S. and individual 50 states. How many times have I, and countless others in a position of authoritylike those lobbying in Congress or before the state legislature for necessary funding levels for prevention, treatment and carebased their arguments on statistics we thought to be true. Now, it hardly matters on some level (and on another it matters enormously) to find out that the CDC has been miscounting, intentionally or not, for years and years and that the actual number is 41 percent higher (I know I am repeating myself, but this is not like a 2 or 3 percent margin of error), or 56,000 new cases each and every year. That’s an additional 16,000 men, women and kids infected with HIV/AIDS each year. Jeez. I feel a bit like Hillary Clinton believing the Bush administration on the intelligence on Iraq, and voting for the war as a result. Yes, I am sorry, but more than that, I am furious.
Why does it matter? First, reporters, policy and health wonks, AIDS activists and legislators all rely on the CDC numbers to assess the impact of the HIV/AIDS epidemic in our communities. One North Carolina AIDS activist told me last week: “The direct impact of the underreporting has had the effect of not making this epidemic as much of a crisis as it is. We’ve said all along that that the numbers of new cases in the state are not flat or dropping and that they only continue to go up.”
But who in the Congress or General Assembly is going to believe a homegrown rabble-rouser versus the venerable CDC, the mother of all infectious disease. Even the state’s AIDS czar, Evelyn Foust, could not hidenor is she the kind of person who would want to hideher frustration with the situation. “Having the right numbers is important to us, because [it allows] us to detect and estimate the burden. It’s important to guide Congress and the state legislature.” Foust also adds that the trend line “tell us whether or not our prevention efforts and activities are working or not.” Finally, she adds: “It’s important because we need to increase funding for prevention, and then care and treatment.” Exactly, Ms. Foust.
Another bombshell lay hidden in the CDC report. Again, The Times reported the news this way: “The findings confirm that H.I.V., the virus that causes AIDS, has its greatest effect among gay and bisexual men of all races (53 percent of all new infections) and among African-American men and women.” Hello? Gay and bisexual men are the epicenter of the latest wave of the pandemic? You’d never know that from the way this plague, now spanning across two centuries, is reported on by governments and journalists.
A generation ago, Larry Kramer, the playwright, activist and long-term HIV survivor, penned some of the first and most prescient stories about the explosive epidemic. One of his most famous, “1,112 and Counting,” was published in March 1983 in the New York Native. At that time there were a little more than 1,000 known cases of AIDS in the U.S. According to a New Yorker magazine critique, Kramer’s essay “was a five-thousand-word screed that accused nearly everyone connected with health care in Americaofficials at the Centers for Disease Control, in Atlanta, researchers at the National Institutes of Health, in Washington, doctors at Memorial Sloan-Kettering Cancer Center, in Manhattan, and local politicians (particularly Mayor Ed Koch)of refusing to acknowledge the implications of the nascent AIDS epidemic.”
And that’s putting it mildly. Kramer’s outrage had no bounds. Many at the time thought he was a loose cannon, even a lunatic. Time has shown otherwise; he was prescient, exacting and morally on the mark.
Exactly 25 years later, it’s more of the same. Only now it’s 565,000 deaths and counting. That is if you choose to believe the CDC. I don’t anymore.
Kramer directed his harshest vilification, however, at gay men who believed that denial of the impending holocaust would make it simply go away. He wrote: “Unless we fight for our lives we shall die … every gay man who is unable to come forward now and fight to save his own life is truly helping to kill the rest of us.” Strong language, indeed. And no truer words then … or now. In fact, Kramer, through both his prose and activism, jumpstarted a generation of AIDS activism in gayborhoods coast to coast that put our community center stage in this fight and through its efforts changed every aspect of this epidemic: innovative prevention efforts that actually altered gay men’s behavior, expedited drug treatment trials that saved tens of thousands of lives, and boatloads of dollars for treatment and care in the hardest hit epicenters of the original epidemic.
A former colleague of mine, a longtime HIV/AIDS advocate in New York who asked me not to use his name because he feared a backlash from his co-workers and others, was another who returned seething from Mexico City. Now approaching 50 and having fought this battle for nearly two decades, he found himself becoming “more and more agitated,” he said, as the conference went on through the week.
Why? “Everyone was kind of patting themselves on their backs,” he told me in a long phone interview. “Infection rates, especially for men who have sex with men and people of color, are going through the roof,” he sputtered. “This conference was a marker of shame, not a marker of progress.” But what outraged him the most, what caused him to “bubble over,” is this: “How did we [gay men] manage to get lulled into this quiet pervasive homophobia in the AIDS field?”
What he means is that despite the disproportionate impact on gay and bisexual men (referred to now as “men who have sex with men”)both in the U.S. and overseasneither the funding nor the discourse reflects that. “Fifty percent of countries don’t even collect data on men who have sex with men,” he said, “which is completely homophobic, and with no data, you can’t make an argument for prevention, much less treatment or care.” In this country, he says, “It’s my group. No, it’s my group. Back and forth.
“Other than gay black men, there’s no other group, other than men who have sex with men, that is so disproportionately affected by this epidemic, with the numbers still getting worse.”
Even CDC Director Dr. Julie Gerberding agrees, although it’s impossible to know or tell from her statement that she has any passion for this fight: “We are not effectively reaching men who have sex with men and African-Americans to lower their risk.”
But what worries this longtime activist is that “we’ve drifted to the point where we’re not even being outraged by this. It’s yawn, yawn and yawn, even within the gay community.” And he adds: “If you don’t talk about AIDS through the prism of women and girls, you’re misogynist and sexist. The face of HIV today is a young girl in Africa. We’re not paying attention to the logic of epidemiology, and that’s basic bad public health.”
Evelyn Fousts name was misspelled; it has been corrected.
Back home, the North Carolina advocate I spoke with couldn’t agree more. “When HIV dawned in the U.S., it first hit the gay community and it didn’t matter to most people because they were immoral and despised by God. That was until money came into the picture. Now, again, it’s the gay community that no one seems to care about. They didn’t matter then and they don’t matter now.”
Amen. As Larry Kramer said in 1983, if we don’t stand up for our brothers, and if our brothers don’t stand up for themselves, who will? Other than our friends in the lesbian community, I think history has clearly shown us the answer to this question. No one.
Steven Petrow has written four books on the HIV/AIDS epidemic, including When Someone You Know Has AIDS. He’s the former president of the National Lesbian & Gay Journalists Association.