So
I’m getting AIDS tested the other day in Berlin. I’m sitting in the
waiting room and feeling like a Bad Gay, because I’ve lived here for
three years and this is my first time getting tested. I’m
surrounded by all these scared-straight brochures about HIV and AIDS in
Germany. Prevalence rates, treatment options, prevention methods, names
and addresses of support groups. “Since the start of the epidemic,” one
of them says, “more than 27,000 people have died of AIDS in Germany.”
Wait,
that sounds triumphantly low for a country of 80 million people. I pull
out my phone and check the Centers for Disease Control and Prevention
(CDC) website, which tells me that, in the United States, 636,000 people
have
died since the epidemic began. That’s 23 times higher than Germany, for a country with four times the population.
This
makes no sense. Germany has big cities, it has gay men and sex workers
and drug users, it has all the same temptations for them to be uncareful
that the United States does. How could so many fewer people have died?
Maybe
it’s a fluke. I visit the Public Health England website and it says
21,000 people have died of AIDS there in total. If the rates were the
same as the United States, it would be 128,000.
The
further down the Google-hole I go, the more mind-boggling the numbers
get. Since the beginning of the epidemic, AIDS has claimed more people
in New York City than in Spain, Italy, the Netherlands, and Switzerland combined.
Illustration by Álvaro Domínguez
The
next day I start asking epidemiologists about this divergence. The
first thing they tell me is that it is real, even accounting for
differences in methodology. Scan the columns on the stats sheets—incidence, prevalence, deaths—and
you find the United States with a two-digit lead going right back to
the start of the epidemic. Still now, no matter how much we’ve learned
about how to prevent and treat AIDS, the United States loses more than
15,000 people to it each year. Germany and the United Kingdom lose fewer
than 800.
The
second thing they tell me is why. AIDS is the same virus no matter what
country you’re in. But when it arrived in the United States, how it
spread, who got it, and why—that’s more complicated, and not entirely flattering.
Looking at the data on AIDS deaths, you see that the virus hit the United States early—and
hard. In 1982, the first year of nationwide CDC surveillance, 451
people died of AIDS in America. Just five died in Britain. In 1985, when
Germany started reporting, it had 170 AIDS deaths. The United States
had almost 7,000.
Jonathan Engel, the author of The Epidemic: A Global History of AIDS,
walks me through the timeline: AIDS first appears in humans in central
Africa in the 1950s. A few isolated cases make it from there to the
United States and Western Europe, but it fails to catch fire. The virus
finally finds a host country in Haiti, ferried to and fro in the veins
of guest workers in Africa. By the mid-’70s, Port-au-Prince is a popular
tourist and cruise-ship destination—“a gay Bangkok” is how Engel’s book puts it—and the virus jumps from male prostitutes to gay American vacationers, to their friends and lovers back home.
Or
abroad. One of the first U.K. surveillance reports, from 1983,
announces 14 cases of AIDS, then adds: “seven of the cases were known to
have had contact with US nationals, suggesting that the present UK
situation is simply part of the American epidemic.”
But
it isn’t just that the virus arrived in the United States earlier. As
Dr. James Curran, dean of the Rollins School of Public Health at Emory
University, points out, Belgium and France had significant central
African and Haitian populations; Haiti was a destination for them, too.
“But the disease wasn’t able to spread through them like it went through
American gays,” he says.
Which
leads to the next factor explaining the larger scale of the HIV epidemic
in the United States: the clustering of our high-risk populations. The
United States has more people than any Western European country, as well
as more mobility, giving rise to larger numbers of and more tightly
grouped gay men and intravenous-drug users. Engel’s book quotes Frances
FitzGerald, writing in The New Yorker in 1986, saying “the sheer concentration of gay people in San Francisco may have had no parallel in history.”
These
clusters were also engaged in riskier behavior. The United States had
higher rates of STDs and intravenous-drug use (epidemiologists used to
call shooting up “the American disease”) before AIDS arrived. All of
this, combined with the virus’s devious characteristic of being
maximally spreadable right after infection, laid the infrastructure for
the disease to maraud through one population and jump to others.
The
closest thing to a natural experiment on this clustering phenomenon is
right in my own backyard. East and West Berlin had the same language,
history, and culture—everything but the political and economic structures that allowed gay men to find each other and addicts to find drugs.
“Before
the Berlin Wall came down, East Berlin had two gay cafés and two gay
bars, for a population of 1.3 million people,” says Michael Bochow, a
sociologist in Berlin who has been researching HIV in Germany since the
beginning of the epidemic. “East Berlin had no bathhouse, no bar with a
back room.”
Guys in East Berlin were still hooking up with each other—of course they were—but
the low labor mobility, combined with the logistical barriers to
participating in gay life and getting intravenous drugs, kept clusters
from forming.
In 1989, when the
Berlin Wall came down, West Germany had about 35,000 people infected
with HIV. East Germany had fewer than 500.
I
don’t want to overstate the case here. This clustering effect is almost
inherently un-measurable (drug use and gayness weren’t exactly on the
census), and there’s no way to know if San Francisco and New York really
had higher proportions of gay people than London, Paris, or Berlin. We
do know that the virus spread faster through U.S. cities than European
ones, but we don’t know, may never know, precisely why.
The third explanation for how the HIV epidemic in the United States got so severe so early has to do with intravenous-drug use—and
the policies that tried to prevent it. One of the most staggering
numbers I came across was that, from the beginning of the epidemic until
HIV treatment became widely available in 1996, 124,800 intravenous-drug
users were diagnosed with HIV in the United States. In the United
Kingdom, it was just 3,400.
Don Des
Jarlais, research director of the de Rothschild Chemical Dependency
Institute in New York, says HIV in drug users followed a similar
trajectory as HIV in gay men. It arrived earlier than in Europe, and it
had a more fertile spreading ground thanks to the higher prevalence of
drug use.
No one knew how severe the
epidemic was among drug users until 1984, when the
still-under-development antibody test found that 50 percent of drug
users in New York City and Edinburgh and 30 percent in Amsterdam were
already infected. (Des Jarlais says genetic tests have since shown that
the epidemic in Amsterdam originated in New York.)
Here’s
where the differences come in. Almost immediately after those first
tests, Western European countries installed needle-exchange programs,
gave out free syringes, and established opiate-substitution treatment.
Germany even got needle vending machines. By 1997, England and Wales
were giving out 25 million free syringes per year. Anything to keep the
virus from spreading, even if it meant making it a little easier to be a
heroin addict that day.
The United
States, on the other hand, refused to provide federal funds for needle
exchanges or even fund research into whether they were effective.
Exchanges were established in some cities—by 1990, New York City was distributing 250,000 syringes a year—but they never achieved the coverage of the countrywide programs in Western Europe.
This
sounds like just another episode to file under “Western Europe
enlightened, U.S. myopic,” but remember how different the context was.
The mid-’80s was America’s heyday of stigmatizing drug users. This was
the era of “Just Say No,” Nancy Reagan on “Diff’rent Strokes,” McGruff
the Crime Dog. America was in the middle of a crack epidemic. All of the
negative impacts of that epidemic—the gang violence to prolong it, the War on Drugs to end it—were
concentrated in poor, mostly African American communities. Just
possessing syringes was illegal in most states. Handing them out in the
millions, facilitating one epidemic to end another, seemed like a cruel
joke.
“They were saying, ‘Why don’t
you just get rid of drug use from our communities?’ ” Des Jarlais says. “
‘You’re letting these drugs come in because you don’t care about our
communities, and now you want to make things worse by giving out
syringes.’ ” This gave national politicians the excuse they needed. The
ban on federal funding for needle exchanges wasn’t
lifted until 2009
—and then got banned again in 2011.
As
I’m calling up epidemiologists, hearing these explanations, it feels
like something’s missing: What about all those public-information
campaigns I remember from growing up? After-school specials, PSAs, the
time my Seattle public middle school gave us all a stack of condoms and
told us to put them on fruit at home? Did Western European countries
implement different, more effective kinds of programs?
Prevention
efforts did indeed differ among countries. Germany threw funding at gay
community NGOs and gave them carte blanche to devise their own
prevention projects. Britain put a John Hurt voice-over on top of Mordor
imagery, called it “AIDS: Don’t Die of Ignorance,” and beamed it to the
whole country.
Engel points out
that, in the United States, despite Ronald Reagan’s sloth-like funding
of HIV research and the government’s stinginess in supporting NGOs, gay
activists were on the streets and in the bathhouses from the earliest
stages of the epidemic, condoms in hand, telling people how to protect
themselves. At the national level, C. Everett Koop sent a pamphlet to
every household in America (literally!), telling them about the disease
and achieving the goal, like the British mass campaigns, of scaring us
all shitless.
The efforts of gay community groups during this time have been (rightly) lionized in movies like We Were Here and How to Survive a Plague.
Less well known is that intravenous-drug users were also educating each
other about how to reduce risks. Drug users started sharing needles
with fewer partners, even setting up their own needle exchanges,
pilfering clean needles from hospitals, or importing them from Canada.
Des Jarlais told me about doctors who used to place boxes of clean
syringes around emergency rooms, knowing they’d be taken by drug users
and sold or given onward.
The
messages and methodologies of these efforts may have differed among the
United States, the United Kingdom, and Germany, but their effect appears
to be equally decisive. By the mid-’80s, gay men and drug users knew
about HIV, they knew about their risks, and they were making changes to
reduce them. In all three countries, HIV incidence—the number of people contracting HIV each year—peaked in the mid-’80s, then started to drop as people de-risked their sex and drug use.
But
for those already infected, none of that mattered; the number of deaths
rose steadily through the late ’80s and early ’90s. The avalanche had
been loosed, and there was little anyone—NGOs, doctors, politicians—could do to stop it.
Graphs
of AIDS deaths in almost every developed country look like a wave about
to break on the shore. Starting from zero, deaths rise steadily through
the ’80s, a bit faster in the ’90s, then suddenly, around 1995 or 1996,
plummet downward.
“That’s the
beginning of the HAART era,” says Caroline Sabin, a professor of medical
statistics and epidemiology at University College London. She’s talking
about highly active anti-retroviral therapy, the cocktail of
medications that, 15 years after the virus appeared, marked the first
truly effective rampart against it.
The
next thing you notice about those graphs is that death rates in the
United States didn’t fall to the same lows as the rest of the developed
world. (Check out how great the discrepancy is in the chart above.)
Sabin points me to a 2013 study that found the United States with
four-year HIV mortality rates roughly equal to those in South Africa.
And
it’s not just the death rates that stayed high. In 2010, the United
States had 47,500 new HIV infections. The entire European Union—with a population more than one and a half times that of the United States—had just 31,400.
So
what gives? “Keeping people alive is about getting them diagnosed,
getting them into care, then making sure they stay in care and on
HAART,” Sabin says. “And that, unfortunately, is where the U.S. differs
from the U.K.” It turns out that, just as the AIDS virus seems almost
designed to perfectly exploit the weaknesses of the human immune system,
treating it seems designed to exploit the weaknesses of our national
health care system.
Let’s start with
diagnosis, the first stage of what epidemiologists call the “cascade of
care.” An undiagnosed HIV infection is a ticking time bomb for the
people carrying it. Each day that goes by, the virus chips away at their
immune systems, reducing life expectancies and increasing the cost and
chances of complications once they finally get on treatment. They also,
crucially, remain more infectious. Up to
50 percent of new HIV infections are transmitted by people who don’t know they have it.
Getting
an HIV test is, logistically speaking, pretty easy in all three
countries. The next stage of the cascade, getting linked to another
round of tests and into treatment, is more challenging. In the United
Kingdom and Germany, if you test positive for HIV, you’ll immediately be
referred to an HIV clinic for tests to measure how much of the virus is
in your blood and how well your immune system is holding up.
Three-quarters
of Brits diagnosed with HIV get to this next stage of care within two
weeks, and 97 percent make it within three months. This is not just some
nationwide codification of English politeness. Clinics that provide
testing are required to get HIV-positive people to the next round of
tests or they don’t get fully reimbursed. If you screen positive and
skip your viral-load test, you’ll get a call from the clinic asking why
you didn’t show up. Some testing centers will walk you straight to the
hospital to make an appointment.
In
the United States, only 65 percent of people with HIV get linked to a
hospital or clinic within three months. A survey in Philadelphia
published in 2010 found that the median
time between diagnosis and treatment was eight months. The effect of
the wait can be devastating. A 2008 study found that gay men who had
full-blown AIDS before they were diagnosed were 75 percent more likely
to die within three years, even if they got on treatment. For people
whose viral load is high and T-cell count is low, getting on HAART is
like putting on sunscreen after they’ve already been at the beach for
two hours.
The next stage of HIV
care is receiving HAART pills and staying on them. People who get
medication rapidly and take it consistently aren’t just less likely to
die of the virus; they’re less likely to pass it on. The epidemio-speak
term for this is having a “suppressed viral load”: The levels of the
virus in your blood are so low that tests can’t pick them up anymore—and your sex and drug partners are also a lot less likely to.
This
is the holy grail of HIV treatment, and arriving there requires at
least 90 percent adherence to the pill regimen. If you stop taking the
pills then start again, or forget to take them more than once in awhile,
the virus could spike or you could develop resistance to the drugs.
In
Britain and Germany, two-thirds of people with HIV have a prescription
for HAART. In America? Only one-third. Forty-eight percent of Brits with
HIV have a suppressed viral load. In the United States, only 25 percent
of them do.
The most obvious reason
for this gap is cost. In the United Kingdom, HIV treatment is
completely free. Some clinics even reimburse you for your bus fare. In
Germany, drugs might cost you a co-pay of 5 euros ($7.50), but that’s
subsidized if you’re unemployed or below an income threshold.
Neither
the CDC nor the National Institutes of Health tracks the out-of-pocket
costs of anti-retrovirals, but Stephanie Cohen of the San Francisco
Department of Public Health tells me that someone without insurance and
earning too much to qualify for Medicaid could pay as much as $2,000 a
month. And that’s just the pills. Clinic visits, infections,
hospitalizations: The costs of treatment multiply as fast as the virus
does without it.
But before we all
rush to Twitter to make easy political points about how America is the
land of the nothing-is-free, again consider the context. The United
States has put tremendous effort and resources ($14 billion per year
now) into HIV treatment and has considerable achievements to show for
it. Medicaid covers HAART for the poor. The Ryan White Program, with
$2.4 billion in annual federal funding, provides it for the less poor.
Some cities, including San Francisco, have better treatment stats than
the United Kingdom or Germany.
Consider,
too, the scale of the epidemic in the United States. When HAART first
became available in 1995, the United Kingdom had around 30,000 people
diagnosed with HIV. Germany had 38,000. The United States had 759,000
and more new infections every year than the United Kingdom or Germany
had in total. Providing testing, treatment, and follow-up to all those
people would have been a Hoover Dam–size investment. One we were not, as
a country, willing to make.
It’s
not just a question of money or political will. In the last two decades,
as the United States has put so much effort into filling the cracks in
HIV care, the virus has moved into the populations most likely to fall
into them.
From its origins as a
concentrated, urban epidemic, HIV has migrated resolutely outward and
southward. “People test positive and they just go home. Then they come
and get tested again,” says Susan Reif of Duke University’s Center for
Health Policy and Inequality Research.
I
didn’t know it was possible to get a lump in your throat from lists of
two-digit numbers, but then Reif shows me the data on HIV in the Deep
South versus the rest of the country. HIV prevalence: 2.3 cases per
100,000 people in Vermont; 36.6 in Louisiana. Death rates: 9.6 per 1,000
person-years in Idaho; 32.9 in Mississippi. In 2011, nine of the top
ten cities for new HIV infections were in the South. In Louisiana, only
68 percent of people with HIV
saw a doctor that year.
Meanwhile, in 2012, AIDS
dropped off the list of New York City’s top ten causes of death for the first time since 1983.
As
the geography of HIV has shifted, so have its demographics. Ethnic
minorities, rural drug users, impoverished heterosexuals: The virus has
found the people least likely to seek—and have access to—health insurance and specialized clinics.
You
could drown in the numbers on this if you wanted to, but a study that
stuck out to me was one from 2012 that found uneducated black men had an
AIDS mortality rate 30 times higher than educated white men. Among
uneducated black women, it found that the introduction of HAART barely
dropped mortality rates at all. In 2011, AIDS was the ninth-highest
cause of death for blacks and twenty-fourth for whites.
Higher levels of stigma, poor infrastructure for treatment in rural areas, abstinence-only education—Reif
says they all contribute to the higher rates of diagnoses and deaths.
Syringe exchanges are still illegal in almost every Southern state. An
estimated 60,000 uninsured or low-income people with HIV live in states
that have rejected the Medicaid expansion under Obamacare.
“Each
state has a different Medicaid program in terms of whether you’re
eligible and what your co-pays are,” she says. “Some Medicaid programs
will only cover a certain number of drugs. So you get five. And you have
to pick which five.”
Just as
explaining the differences between Europe and America requires
accounting for the weight of their histories and social structures, so
does explaining the differences between the South and the rest of the
United States. “The disease burden in the South is high for other
diseases, too,” Reif says. “A lot of it goes back to institutionalized
racism, poverty, the legacy of Tuskegee. There’s a lack of trust in
health care. The states say they don’t have the money [to expand
Medicaid]—and there’s some truth to that.”
No
health care system in the world has solved the problem of AIDS. The
United Kingdom and Germany have gaps in their cascades, too. They
struggle to control costs and reach marginalized populations the same as
the States. They just have less margin to reach.
But
in trying to explain these numbers, I don’t want to excuse them. Some
of the reasons the AIDS epidemic has been so devastating in the United
States were chosen for us by history. Others we have chosen ourselves.
“At
the end of the day, it’s best understood as a function of health
disparities writ large,” says Chris Beyrer, the director of the Johns
Hopkins Fogarty AIDS International Training and Research Program. The
core difference between the United States and Western Europe, he says,
is that “we’re a much bigger, much more complex, and much more unjust
country.”
Clarification: This
piece has been updated to note that federal funding for needle exchange,
permitted after 2009, was banned again in 2011.
Michael Hobbes is a human rights consultant in Berlin. He has written for Slate, Pacific Standard,
and The Billfold. Follow him on Twitter @
rottenindenmark.
Bunmi is the author of 