WASHINGTON — AIDS has killed 35 million people. It’s caused physical pain and mental anguish for many who live with it. It’s created a generation of African orphans. It’s drained untold trillions of dollars from national economies and people’s pockets.
There’s also another way to describe the AIDS saga. It’s a success story.
As the International AIDS Conference returns to the United States after 22 years, the saga of a disease that has killed 35 million people captures the turn of the millennium as a time of optimism as well as crisis.
“We are entering a new era — an era of burden-sharing but also an era of ownership,” says UNAIDS head Michel Sidibe.
“I hope,” he continued, “that will be one message this week.”
AIDS tells the story of mankind’s powers of observation, the capacity of science to figure things out, the importance of citizen movements, the globalization of problem-solving, the intolerance of extreme inequality, the impulse for generosity, the ability of government to do good. It captures everything that has made the turn of the millennium a time of optimism as well as crisis.
“There is no other infectious disease in the last 100 years that has caused so much suffering and so much death and appeared so unexpectedly,” said Diane Havlir, an AIDS physician at the University of California at San Francisco and co-chair of this year’s International AIDS Conference. “Also no other disease where the benefits of the investment in science and response have been so great.”
AIDS conferences are the stop-action frames of that narrative.
The 19th International AIDS Conference opens today in Washington. It is in the United States for the first time in a generation. Its convening on American soil acknowledges the end of a long and controversial U.S. policy — a ban on known HIV-positive people from entering this country. As a result, 25,000 researchers, activists, clinicians, social scientists and journalists will be around town and underfoot this week.
If by some chance there were a Rip Van Winkle character among them and he asked what had happened in the 22 years since an international AIDS conference was held in the United States, the answer would be simple.
Just about everything.
In 1990, when the meeting was held in San Francisco, AIDS was an almost uniformly fatal disease. The public and much of the medical profession feared it and its victims, mostly white homosexual men and intravenous-drug users. The one AIDS drug worked poorly.
AIDS advocates waged angry and occasionally violent protests for more research and better drugs. Pharmaceutical companies and many scientists resented the meddling by “non-experts” (but eventually came to include them in decisions). Preventing infection required difficult changes in behavior. The biological workings of the infecting agent, human immunodeficiency virus, was mostly a mystery.
In 2012, HIV infection is a dangerous but treatable disease. Many people will live with it for decades and die of other ailments. It is less feared and stigmatized, although many sufferers still live at society’s margins. There are now two-dozen drugs to fight the virus. They are expensive but available to nearly everyone who needs them in wealthy countries and taken by more than 8 million people in poor ones.
A vaccine against AIDS remains elusive. But there are strategies afoot that may further quench the global epidemic, which peaked during two decades separating the 1990 conference and this one. And now there are phrases such as “AIDS-free generation” and “cure for AIDS” in the air.
The public’s understanding of AIDS has also progressed.
A new poll by The Washington Post and the Kaiser Family Foundation sketches a picture of the host country — a United States that understands the sea change in AIDS of the past two decades but is unaware of many details of the progress of recent years.
International AIDS conferences — held since 1985, first annually and now every other year — are cacophonous, confusing, crowded, interesting and exhausting events. For a week, experts give plenary lectures updating listeners about the biology, epidemiology and treatment of HIV infection. New research is presented in 15-minute lectures, in poster sessions held in cavernous halls, and in late-afternoon symposiums. Activists meet, train and exhort. Drug and device companies show their wares. The famous and the unknown speak.-
The terms of success
Look for the words “amplification” and “implementation” to be a big part of talk this week.
They are boring, polysyllabic words. Not like “sex,” “drugs” and “death,” which were the key words of some AIDS conferences. But they are words that signal success.
The world today knows how HIV is transmitted, what can be done to prevent its spread and how to treat someone once it is diagnosed. The issue is no longer what to do but rather who to do it for, where, how quickly and at what cost.
That’s where “amplification” and “implementation” come in. How much do we want to amplify our successes? What is the strategy for implementing our hard-earned knowledge? Those are the big questions.
The greatest scientific achievement in the past 22 years is combination anti-retroviral therapy (ART), with wide usage beginning in 1996. A patient takes three drugs that block one or more steps in HIV’s replication. That drives the virus to undetectable levels in the bloodstream and allows the immune system to restore itself to health.
Treatment is now a “done deal” in the eyes of John Bartlett, the 76-year-old former head of infectious diseases at Johns Hopkins Hospital and one of the first people to notice the appearance of rare infections in unlikely patients.
In May 1981 he saw a Baltimore woman, a heroin addict, who had Pneumocystis carinii pneumonia. A month later, physicians in Los Angeles published a report on a group of gay men with that same “opportunistic” infection seen most often in cancer patients with severely damaged immune systems. It was the first description of AIDS.
In 1984, Bartlett set up the world’s second AIDS clinic at Hopkins. He has helped write the federal government’s treatment guidelines ever since.
In a recent conversation, he conceded that there will be new and better HIV drugs to come. But with many patients achieving an undetectable “viral load” by taking one pill once a day, the therapy battle has been won.
“We have the (pharmaceutical) armamentarium that will take care of all the patients that come to us — with the proviso they take the pills,” he said. “People who start now should almost always succeed.”
There’s an added bonus. People with a virus that is “fully suppressed” rarely transmit it. In a study of African couples published last year, the risk of passing on the infection was cut 96 percent.
That finding, long suspected, has led to the battle cry of “treatment as prevention,” which also will be a big part of this conference’s conversations. Expect to hear that the multibillion-dollar effort to get HIV medicines to the developing world needs to be increased by billions more because, short of a vaccine, AIDS drugs are the best tool for stifling the epidemic.
For the American public, this news is just starting to sink in.
In the Washington Post and Kaiser Family Foundation poll of 1,524 adults done in mid-June, only 49 percent of people say HIV treatment improves the lives of those who receive it “and also helps prevent the spread of the disease to others.” Forty-four percent say HIV treatment benefits patients but has no effect on transmission.
The vast majority, however, know the central truth about AIDS in 2012.
Eighty-nine percent say they agree with the statement, “It is possible for people with HIV to lead healthy, productive lives.” In fact, nearly half — 46 percent — say HIV infection is a “manageable chronic disease, similar to diabetes or high blood pressure.”
While most patients and physicians would argue with that second statement, it is an extraordinary change in public perception from the HIV-as-death-sentence view that held sway the last time an AIDS conference was here.
Progress, and its cost
From the start, AIDS has been a global disease — a pandemic. The world is also a flatter, more intimate place than it was in 1990. So most of this week’s conversation will be about AIDS far from American shores.
According to UNAIDS, the United Nations AIDS agency, there are 34.2 million people living with HIV around the world (a number that, as it happens, is close to the death toll of 35 million since the start of the epidemic). More than two-thirds of those people — 23.5 million — live in sub-Saharan Africa, and more than 1 in 10 (4.2 million) in India or Southeast Asia.
The effort to bring anti-retroviral therapy to people in those regions is the most important development since the emergence of the treatment strategy itself.
Today, more than 8 million people in low- and middle-income countries are taking the medicines. That’s 54 percent of those who should be getting it, according to clinical guidelines drawn up by the World Health Organization.
Coverage in sub-Saharan Africa is 56 percent. (That is the region targeted by the President’s Emergency Plan for AIDS Relief, or PEPFAR, the five-year, $15 billion program that George W. Bush announced to astonished listeners in his 2003 State of the Union speech.) Coverage is higher in Latin America (70 percent), lower in Asia (40 percent) and much lower in Eastern Europe and Central Asia (23 percent) and the Middle East and North Africa (13 percent).
Less than 10 years ago, there were only 400,000 people in the developing world taking anti-retroviral drugs. The 20-fold increase has occurred with astonishing speed. In Africa, the number of people on therapy jumped 20 percent — from 5.1 million to 6.2 million — in 2011 alone. The Obama administration announced last week that PEPFAR is now treating 4.5 million people, a half-million more than in December.
Prevention is also making headway.
In 2011, 2.5 million people acquired HIV — one-fifth fewer than a decade earlier. Last year, 57 percent of pregnant HIV-positive women got anti-retroviral drugs to prevent transmitting the virus to their babies — a strategy that produced 24 percent fewer newborn infections than just two years earlier.
News of these recent gains appears not to have reached most Americans. Nearly three-quarters in the Post-Kaiser poll say that most people in developing countries do not have access to HIV prevention services. Only 16 percent say that most do.
However, when asked more generally about progress against AIDS, Americans are more up to date. Asked if “the world is making progress,” 58 percent say yes, a lot more than in 2002, when 35 percent gave that answer.
Who’s paying for this progress? Countries of the developing world last year spent $8.6 billion on AIDS. Rich countries, philanthropies, the World Bank and U.N. agencies spent another $8.2 billion. Money from the U.S. government accounted for 48 percent of all international assistance. When only assistance from governments is considered, the U.S. share was even larger — 59 percent.
A new entity , the Global Fund to Fight AIDS, Tuberculosis and Malaria, has collected or been pledged $22.6 billion since its creation in 2002. It now provides AIDS treatment for 3.3 million people.
This picture is changing, too. In the past five years, 81 countries increased the amount of money they spent on AIDS by more than 50 percent. Even some of the poorest, such as Haiti and Sierra Leone, more than doubled it. South Africa quadrupled it.
“I am seeing a new narrative,” Sidibe, the UNAIDS director, who is originally from Mali, said last week — a narrative of “burden-sharing.”
That is not going to muffle shouts that the United States is not spending enough money on AIDS, despite the fact that PEPFAR’s budget is $6.6 billion. Activists are particularly unhappy with the Obama administration’s plan to cut the program by 3.3 percent next year in the name of fiscal austerity. The president’s commitment “has been lukewarm at best,” said Tom Myers of the AIDS Healthcare Foundation, which helps care for people in 26 countries. “It may be better if he doesn’t attend the conference.” In fact, the White House announced that the president’s schedule will preclude him from coming.
On the domestic front of the war on AIDS, a different debate about “amplification” and “implementation” is getting started. It involves prevention, not treatment. The question is how many people — and which ones — should use a new weapon called pre-exposure prophylaxis, or PrEP.
Several studies have shown that when HIV-negative people take anti-retroviral drugs they are less likely to acquire the virus if they have a sexual encounter with someone who is infected. The protection is far from absolute. But in people who take the medicines regularly, the strategy appears to reduce risk by at least 75 percent. This is true for homosexuals and heterosexuals.
This month, the Food and Drug Administration approved the use of Truvada, the brand name for a combination of emtricitabine and tenofovir, for this purpose. Is this the secret to ending the spread of the AIDS virus? Some think it will be a big help; others that it is a dangerous and expensive distraction.
How much interest there is in PrEP is unknown. That is likely to be a topic of discussion at the conference this week.