Under fire for new infections, HIVers confront a crisis worse than any supervirus. But by embracing responsibility for prevention—and facing our demons—we can end the epidemic
We know in our bones what’s in store. Despite all our efforts to put a
human face on AIDS, HIVers are in danger of becoming as demonized as in
the darkest days of the ’80s. With the ranks of Americans with HIV now
exceeding the one million milestone, the nation is growing impatient
throwing money at a preventable epidemic that no one can seem tohalt.
“You should’ve known better” is the increasingly common response to new
HIVers, many but a step removed from prison, promiscuity and
drugs. Nothing illustrates this intolerance better than the media’s
near-unanimous praise of a published “apology” by Jesse Helms, for many
years the most powerful anti-PWA lawmaker in the land: “Until
[befriending evangelist Franklin Graham and rocker Bono], it had been
my feeling that AIDS was a disease largely spread by reckless…sexual
and drug-abusing behavior and that it would probably be confined to
those in high-risk populations. I was wrong.”
Tragically,
we stand at the brink of a potentially epic breakthrough in the science
of prevention that could turn the American epidemic around. But this
critical development comes at a time when what prevention needs is to
free itself from the irrationality and ideology that have long informed
it—both the moralizing of Christian conservatives and the moral
relativism of liberals—in favor of hard science. Instead, it remains at
the volatile center of the culture wars.
The little-publicized
research focusing on “sexual networks” is telling us to go right to the
epidemic’s viral hot spots—and not simply test those high-risk people
but launch reality-based interventions that offer carrots rather than
sticks (drug treatment, for example, not prison). But most leading
civil rights and AIDS organizations lack the political will to risk
backing these measures in the face of a Bush administration that owes
its reelection to the evangelicals, for whom abstinence funding is
payback.
Looking at the prevention through “sexual networks”
reveals one immensely significant fact about the epidemic: that a tiny
fraction of people with HIV—perhaps less than 5%—keep a particular
community’s viral wildfire burning. These hot spots are defined not
only by sexual connections but by personal problems like addiction and
social ills like poverty that dramatically accelerate the spread of
HIV. As their staggering HIV infection rates attest, people of color
and men who have sex with men are up to five times as likely as the
average Joe or Jane to shack up with one of these high-risk core-group
members—or, like the crystal meth–addicted gay New Yorker at the center
of the recent supervirus furor, get sucked up into the hot spots
themselves. If community-based prevention—including condom and
clean-needle distribution—can be said to be a failure, it is precisely
because it has failed to adequately reach this crucial 5%. But
interventions that expand our grass-roots prevention to include
rational public-health measures like partner notification stand a
chance—if only our community could embrace and implement them in our
own way.
Unfortunately, old fears have prevented us from
thinking clearly about such methods. Meantime, we are mired in an
argument about whether to disown or protect these hard cases at the
heart of the epidemic. Outside our community, a similar argument is
taking place between our friends and enemies, one that increasingly
centers on the personal responsibility of all HIVers in sex—despite the
evidence that the 95% of HIVers outside the viral hot spots have little
effect on driving the epidemic. But when has reason ever trumped
emotion when it comes to AIDS?
Still, talk of “personal
responsibility,” however threatening to some HIVers, may be the opening
to a new and necessary dialogue. People with HIV alone do have the
power to stop new infections—and not only through facing fears of
disclosure and always protecting sex partners, as profoundly important
as those are. The personal responsibility that is increasingly focused
on all HIVers also offers the chance for our community to be leaders
once again in prevention.
Failing
to do so, we risk being
scapegoated—lumped together by an AIDS-weary, moralistic nation as
reckless infectors. Given the abstinence-pushing forces ranged against
us—from private groups, like Focus on the Family, to the highest
government officials—taking charge of, let alone reforming, prevention
could take a miracle. But HIVers have made miracles before. In 1983, a
few desperate gay men invented “safe sex,” cutting new infections so
rapidly that public-health experts hailed it as miraculous. That they
did so in the face of society’s stigma and persecution is even more
miraculous.
We can once more find the courage to confront our demons
and transform them into salvation. We can fight the urge to back away
from new HIVers and to deny that we too know the drug addictions and
sexual compulsions of that hard core. Together, we can bite the bullet.
A DANGEROUS NEW PHASE For
a reality check on how bad things are, consider the supervirus case.
Last February, New York City’s health commissioner, Thomas Frieden, MD,
announced that researchers had diagnosed a strain of HIV so
aggressive and drug-resistant as to seem untreatable. At a news
conference on the steps of City Hall, he declared an official
emergency, alerting the public to a dangerous new phase of the
epidemic.
As AIDS leaders called for a renewed attack on the
scourge of crystal meth among gay men, and public-health experts fanned
out to labs nationwide looking for similar infections, the media
focused intensively on one particular sexual network, New York’s
fast-track gays and their meth-fueled unsafe-sex parties. Anti-PWA
rhetoric spewed from HIV negative gay journalists, such as Charles
Kaiser, who told The New York Times, “A person who is HIV positive has
no more right to unprotected intercourse than he has the right to put a
bullet through another person’s head.”
Equating HIVers with
murderers, Kaiser’s “bullet” was the pitch-perfect sound bite, and the
press declared open season on risk-taking HIVers. Hearing hate
speech from so close to home stunned many HIVers. In June, Canadian gay
columnist Richard Burnett added: “If you want to play God, spread HIV
and ruin other lives in the process—then do us all a goddamn favor and
put a fucking bullet through your head instead.”
That the
supervirus had been downgraded in the media to a false alarm—no second
case was discovered, “Patient Zero” was on treatment and back at
work—barely registered. Righteous wrath at irresponsible HIVers
was the beat. Veteran journalist Andrew Sullivan says, “Ever since I
came out as positive, the hatred has been far more intense from a small
cadre of gay activists and journalists than from the religious right.
Sometimes I wonder what separates the two with respect to attitudes
toward people with HIV.”
A TEST FOR POSITIVES If
only Sullivan were right. In fact, the name-calling of gay journalists
was so much spilled milk (and ink) compared to the blitzkrieg on
condom-based prevention unleashed in recent years by allies of the Bush
administration. HIVers and their advocates could, until Election 2000,
boast of hard-won places at federal AIDS tables, including the Centers
for Disease Control and Prevention (CDC), which funds most of the
nation’s prevention research. But in the Bush White House, HIV
prevention at the CDC became a battleground on which the faith-based
movement simply overpowered our AIDS service organizations. Demoted
from trusted adviser to outside observer at the CDC, community groups
abandoned an emerging critique of our own failing prevention to mount a
defense of condoms and frank talk of sex, the two cheapest, most
trusted tools of sound prevention policy.
Then, in 2004, the CDC
unveiled its Prevention for Positives Initiative, an implicit
acknowledgement that the millions of federal dollars spent on a
decade-plus of education for low-risk suburban teens and “a condom
every time” prevention was a bust—a view the rising new infection rates
confirm. But shifting the burden for prevention from the HIV negative
to the HIV positive raised red flags for many advocates and experts.
Julie Davids, head of the Community HIV and AIDS Mobilization Project
(CHAMP), sees this shift as the beleaguered CDC’s strategy to keep both
conservatives and community activists off its back, but ultimately
feels that “what underlies all of this is what happens when you have a
government that…doesn’t actually believe you can end AIDS.”
The
CDC’s justification sounds benign, contending that since most HIVers do
the right thing regarding safe sex—and studies support this safe-sex
assumption—the key to controlling infections lies in testing the
250,000 Americans who don’t know they are positive. The feds may tout
this as a radical new public-health focus, but these measures are
neither new nor radical: HIV testing as a “routine” part of medical
care and notifying sex partners for those who test positive are decades
old. The word condom, however, is suspiciously missing in the CDC’s
proposal, so in practice, Prevention for Positives often begins—and
ends—with testing. As for counseling, care and treatment, the CDC
merely “recommends” these services, leaving it an open question where
the money for the psychological and physical health of a quarter of a
million newly diagnosed Americans with HIV will come from.
Ana
Oliveira, executive director of Gay Men’s Health Crisis (GMHC),
dismisses the new focus on positives as “simple-minded thinking on HIV
testing and names reporting…that you just need to ‘test and track’ and
the epidemic would take care of itself,” adding that “HIV
prevention [has been driven] into the arms of those who would ‘just say
no’ to sex and drugs.”
But Ronald Valdiserri, MD, the deputy
director of the CDC’s National Center for HIV, STD and TB Prevention,
defends shifting the responsibility for prevention to HIVers by
pointing out that treatment advances are allowing people with HIV to
live longer, have more sex and therefore transmit more HIV. He
also disputes the claims of right-wing pressure, saying, “I’ve been
involved with [the new initiative] since day one, and I’m not aware of
any influence at all.” Prevention for Positives may indeed uncover
thousands of new HIVers, but with no commitment to other supports—from
condoms to HIV meds—the campaign may also backfire, producing thousands
of newly positive who are desperate, confused, angry, hardly the ideal
mind-set for taking personal responsibility in sex.
And does
Prevention for Positives address that crucial 5% driving the epidemic?
Valdiserri claims that his agency not only endorses the science of
sexual networks but invented it. “The CDC, especially the STD program,
has been aware of sexual networks before the theory even had a name,”
he says. In fact, the CDC has funded and implemented a number of such
studies over the years, but the new initiative uses it only to find new
HIVers, not to enlist them in interventions. “I don’t understand why
this is just coming to people’s attention right now,” says Maureen
Miller, MD, a pioneering Columbia University researcher. “It should
have been on the agenda 15 years ago.”
THE RATIONAL IS RADICAL The
dry, almost mathematical details of sexual-network science have always
bothered HIVers and other advocates (see “Hot-Spot Science,” page 29).
They seem to reduce humanity, psychology, morality to statistics, data,
a dot on a map. Back in the ’80s, it also led some scientists and
politicians to a simplistic and punitive solution: The best way to stop
HIV was to cut the sexual connections—by promoting abstinence or
monogamy. For those of us who can’t or won’t comply, condoms were an
unfortunate last resort. A = Abstinence. B = Be Faithful. C=Condoms.
Sound familiar?
Some Republicans in Congress proposed a more
draconian “solution”: Isolate the people with multiple connections
through quarantine. A public-health emergency, they claimed, justified
the violation of civil liberties.
This willingness to
sacrifice the few to save the many was heard often in the early days,
and the revelation of how hated HIVers were has traumatized our community. Our prevention leaders wanted nothing to do with this
dehumanizing public-health numbers game.
Well, the scientists
and numbers people are back with their charts, graphs and a powerful
message—one that explains why even our most well-intentioned prevention
has failed to stop AIDS. Sexual-network experts describe the epidemic
as clusters of people making choices about who to partner with, what
degree of risk to take and how they and their partner are connected to
the larger network. Most HIV negative people have a low risk, and most
HIV positive people pose a low risk, as long as they always use condoms
or partner exclusively with others whose status they can be sure of.
But whether a person has a lot or a little sex, when they do have
condom-free sex with a new partner, everything rides on who that person
is. If they’re directly connected to a cluster at the center of the
network—those who have high-risk sex with many partners, negative and
positive—the chance for transmission grows astronomically. At the same
time, the closer a person is to the core, the less likely that
traditional prevention will reach them. A crystal-meth addict is
unlikely to stop for condoms between parties and scoring. A young black
woman who needs to keep her man is not likely to demand that he put on
a rubber.
Columbia University’s Maureen Miller knows all
too well how hard it is to change the behavior of people in a sexual
network. “The reality for the women I work with in Brooklyn is that
there are 40% more women than men, largely because so many men are
incarcerated,” she says. “This puts women at a disadvantage in
negotiating safer sex, as they know that their partner can easily
choose to be with another woman.”
There’s a good chance that this
other woman will have a history of crack or heroin use and exchanging
sex for drugs or money—and therefore a risk of HIV. In the sexual
networks Miller studies, most women have a much higher HIV risk, even
those who have never used drugs and are monogamous.
Not
all the
research is grim, however. Many novel interventions are either in the
works or already up and running (see “Hard Core,” page 30). None is the
miraculous answer to HIV that was once believed to be coming in “just
10 years” in the form of a vaccine. But they are programs that
realistically address the epidemic as we live it today. Though small
first steps, they offer hope precisely because they are grounded in the
actual risks people take—not the ones that prevention activists or
evangelical Christians think they should take.
REACHING—AND REACHING OUT The
ugly truth is that our epidemic is still driven by sexual promiscuity
and drug addiction. As this news gets louder and more public, you
needn’t be psychic or paranoid to predict Jerry Falwell and James
Dobson giving impassioned speeches, run hourly on Fox News, to
criminalize gay sex in the interests of national security. Fiscal
conservatives will argue that it is no longer fair to ask the rest of
America to cover expensive HIV meds for people whose deviant behavior
made them sick.
Will HIVers then divide into ugly oppositions:
the “innocent” infected vs. the “you should’ve known better,” negatives
vs. positives, hetero vs. homo? It will be harder than ever for
HIVers to speak openly about the complexity of their lives before they
were infected. But such honesty is the only corrective to the
stereotypes exploited by the morally righteous to justify the
scapegoating of HIVers.
Given our nation’s growing intolerance,
the ability to respect painful differences and speak shameful truths
will take courage. But do so we must. Failing to reach—and reach out
to—the most despised and irresponsible among us will lead to
retribution against all HIVers. After all, so many HIVers were
once desperate souls who know what it is to put
another person at risk, and with each passing month, a larger majority
of newly positive people will be, too. Who better, who else to lead the
way?
Hot-Spot Science
The
science of sexual networks explores how people are related through
sex—and the risk of HIV. While radically reducing our rich humanity to
dots on a chart—connected by lines to other dots—the method’s power is
to offer a bird’s-eye view of who is infecting who.
“It
has long been known that some contribute much more to the spread of HIV
than others. Ignoring that fact hampers our ability to slow HIV/STD
transmission,” write Dan Wohlfeiler and John Potterat, two research
pioneers. This throws light not only on why untargeted, “a condom every
time” prevention misses the mark but on the very people and places we
must reach—that core 5%—to stop HIV.
Hot
spots—whether a sex-worker strip, a needle-shooting gallery, a gay
bathhouse, a prison or the ’hood where women outnumber men—share five
features: 1. Size: The more people, the faster HIV spreads. 2. Sex: The more sexual links, the faster HIV spreads. 3. The Core : The more people with more partners, the faster HIV spreads. 4. Partner Sharing: The more people with more sex partners at one time, the faster HIV spreads. 5.
The Periphery: Sex between people on the periphery, with fewer
partners, and those in the core, with many, define the scope of
HIV.
Studying
hot spots in tandem with such social ills as segregation, stigma, drugs
and poverty explains why HIV still rages in the communities of people
of color and gay men. Science has advanced us a long way from the old
notion that everyone is equally at risk and responsible, but prevention
has yet to catch up.
Hard Core
These
three interventions offer new ways to access sexual hot spots. None is
earth-shattering, but each uses self-interest as an incentive for
high-risk, hard-to-reach HIVers—and they work.
1. Kinder, Gentler Partner Notification University
of North Carolina’s Adaora Adimora, MD, launched a partner-notification
program—a standard public-health measure long resisted by the HIV
community—but with a twist. Rather than subject a person who has just
tested positive to the sexual third degree, Adimora
pays these black women to recruit others for testing. Her program
proved nearly five times better at finding undiagnosed HIVers than the
CDC.
2. Get Cash to Get Clean Similarly,
UCLA’s Steven Shoptaw, PhD, has found that paying meth-addicted gay men
incrementally larger stipends for staying clean over time not only
works better as a drug treatment than standard approaches but also dramatically reduces unprotected anal sex. Money talks—especially to
folks who have hit bottom. (For more on kicking crystal, see Resources,
page 44.)
3. A Risk-Reduction pill Scientists
recently confirmed that herpes-2 astronomically increases the risk of
giving or getting HIV. So researchers at the University of Washington
in Seattle are studying whether blanketing gay communities on the West
Coast and HIV hot spots in Africa with acyclovir, a cheap herpes med,
will reduce new HIV infections.
