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Why Did AIDS Ravage the U.S. More Than Any Other Developed Country? Solving an epidemiological mystery
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. 1 Scan the columns on the stats sheetsincidence, prevalence, deathsand 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. 2
(Five Startling Statistics About America's Dreaful Record on HIV/AIDS)
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 whythat's more complicated, and not entirely flattering.
Looking at the data on AIDS deaths, you see that the virus hit the United States earlyand 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 itand 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 cultureeverything 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 otherof course they werebut 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 useand 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 citiesby 1990, New York City was distributing 250,000 syringes a yearbut 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 epidemicthe gang violence to prolong it, the War on Drugs to end itwere 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 2009and 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 incidencethe number of people contracting HIV each yearpeaked 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 anyoneNGOs, doctors, politicianscould 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 Unionwith a population more than one and a half times that of the United Stateshad 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 anymoreand 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 Damsize 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 seekand have access tohealth 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 educationReif 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.
Each country has a slightly different system for reporting HIV cases and AIDS deaths, and epidemiologists are often reluctant to make apples-to-apples comparisons: "It's more like Red Delicious to Granny Smith," one of them told me.
It's better to think of the surveillance numbers as a range, subject to updates and back-calculations as more data comes in. But still, the differences in measurement are nowhere near enough to account for the gaps among countries. Measuring my income against, say, Oprah Winfrey's would be subject to methodological fuzziness, tooshe has capital gains, real estate appreciation, tax acrobaticsbut it's still fair to say she makes more money than I do
I'm comparing the United States with these two countries for the sake of simplicity and because I speak the languages and have access to epidemiologists there. The United Kingdom and Germany are on the high and low side, respectively, of the severity of the AIDS epidemic in Western Europe, but they're not outliers by any means. You could compare the United States with France, the Netherlands, Italy, wherever, and you'd come up with basically the same story.
Michael Hobbes is a human rights consultant in Berlin. He has written for Slate, Pacific Standard, and The Billfold. Follow him on Twitter @rottenindenmark.