Thirty years ago, we first began hearing about AIDS — then a mysterious, unnamed disease that was initially thought to be a rare form of cancer that affected gay men. Scientists soon learned that it was neither of those things, and, in fact, it was a virus that everyone was vulnerable to.
That vulnerability became apparent when, in 1991, basketball superstar Magic Johnson announced that we would retire immediately because he had contracted HIV.
Johnson assumed he would begin to manage his own death, and yet today, it's very likely people like him will live to see Social Security checks and Medicare benefits. The biggest part of that reason is because of the breakthroughs in treatment. The new drug Truvada, which can actually prevent HIV, was approved by the FDA this week.
The battle, however, is far from over. Each year in the U.S., 50,000 new cases of HIV are diagnosed. One of the hardest-hit places is Washington, D.C., which plays host this week to the International AIDS Conference.
AIDS In The Nation's Capital
HIV infection rates in Washington are higher than in many countries in Africa; 2.7 percent of the population – roughly four times the national rate — has HIV.
The city's black community is hit especially hard, with an infection rate of 4.3 percent. Less than half of D.C. residents are black, yet they account for 72 percent of those living with HIV/AIDS in the city.
According to Dr. Gregory Pappas, who heads the HIV/AIDS Administration for the city's health department, 20 percent of residents who are infected have no idea.
"So in D.C., that means that 4,000 or 5,000 people are out there on the streets, living their life [and] spreading disease," Pappas tells NPR's Amy Held. "Half of new infections come from people who don't know their status."
The city is making some progress. Not a single HIV-infected child has been born here since 2009, and new infections among intravenous drug users are down 70 percent since 2006.
Yet, there is no doubt that AIDS remains a huge problem in Washington.
"We have two or three people in D.C. infected every day," Pappas says.
Most of them are in the city's black community. Between 2006 and 2010, newly diagnosed HIV cases — not AIDS — rose about 20 percent among blacks, yet fell among whites by nearly a third.
So what accounts for the disproportion? Pappas says it is a combination of poverty and lack of education. A third of people in the city get tested each year, but Pappas says it needs to be higher.
"I think it needs to be about two-thirds," he says. "We're getting there, [but] we've got to make testing normal."
When Dr. Jeffrey Lennox began his career 30 years ago, the AIDS epidemic was just beginning to take shape.
Lennox, a leading AIDS researcher at Atlanta's Grady Memorial Hospital, tells weekends on All Things Considered host Guy Raz that those early years of the disease were difficult.
"Taking care of patients at that point, once we knew how to diagnose it ... basically everybody I took care of died," Lennox says.
A change came when, in 1995, the first triple-drug combinations became available, Lennox says. He saw an amazing transformation take place, where people who were on their deathbed were discharged within a month.
"It was the most amazing thing and it still is," he says. "We still get people who come in at the end stages of AIDS and if we catch them in time, many of them are restored to normal health."
Today, there still is no outright cure for HIV/AIDS. There are, however, combinations of drugs that can act as lifelong therapy to suppress the infection, Lennox says. He estimates that the average person who goes on treatment and suppresses the infection will live about 30 years.
The problem is getting people on those HIV/AIDS treatments. According to the Centers for Disease Control and Prevention, about 25 percent of those infected in the U.S. are in treatment and have their disease under control. That remaining 75 percent is made of those who don't know they have the disease, those who don't want to seek treatment and those who are in treatment but not reliably taking their medication, Lennox says. He too emphasizes testing as a first step.
"We need to make testing as easy as getting your blood pressure at a drug store ... so that there's no barrier to testing," he says.
Lennox doesn't think that he'll see a cure by the end of his career, but he says people are working on it and many remain optimistic. One person has been cured, so Lennox says it is possible.
"We have the tools, but we don't have a blueprint or any construction equipment," he says. "We know where we want to go, but we don't know how to get there reliably."
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GUY RAZ, HOST:
It's WEEKENDS on ALL THINGS CONSIDERED from NPR News. I'm Guy Raz.
And we're following the latest developments in the aftermath of the Colorado shootings. Investigators are still trying to piece together information about the alleged gunman, James Holmes.
In a few moments, we'll have the latest from Aurora. But first to our cover story today. As the International AIDS Conference kicks off here in Washington, D.C., this week, we're going to take a closer look at the state of AIDS research and where it's headed. Later, we'll hear from former Olympic diver Greg Louganis on living with HIV and living well.
It's almost hard to believe that just 30 years ago, if you turned on the nightly news, you'd hear this.
(SOUNDBITE OF NEWS REPORT)
UNIDENTIFIED MAN #1: ...the live cell of some male homosexuals has triggered an epidemic of a rare form of cancer.
RAZ: Twenty-one years ago, this announcement shocked a city and the country.
MAGIC JOHNSON: Because of the HIV virus that I have attained, I will have to retire from the Lakers today.
RAZ: Magic Johnson assumed he would begin to manage his own death, and yet today, it's very likely people like Magic Johnson will live to see Social Security checks and Medicare benefits. The biggest part of that reason, as we'll find out, is because of the breakthroughs in treatment. A new drug, Truvada, can actually prevent HIV, and it was approved by the FDA this past week.
But the battle is far from over. Fifty thousand new cases of HIV are diagnosed in the U.S. each year. One of the worst hit places, right here in our nation's capital. HIV infection rates in Washington are higher than in some countries in Africa. And as NPR's Amy Held reports, African-Americans are among the hardest hit.
ALICIA BARBOUR: Here we go. And you just take it up (unintelligible) like you're brushing your teeth (unintelligible).
AMY HELD, BYLINE: Alicia Barbour(ph) may sound like a dentist, but she's actually an HIV tester who operates from inside a van. Almost every day, she sets up the mobile testing van in some of the roughest parts of the city. This afternoon, she and other testers are outside a subway station.
UNIDENTIFIED MAN #2: (Unintelligible) free HIV tests.
UNIDENTIFIED MAN #3: Yeah.
UNIDENTIFIED MAN #2: (Unintelligible)
UNIDENTIFIED MAN #3: Right over there. We have a green and a white van.
HELD: Alicia and other testers work for a community education group. They're part of the front line in the fight against HIV. Last year, the group tested 10,000 people in Washington, D.C. Dell Tory(ph) is one of those people. He goes for a free test every few months.
DELL TORY: I want to know, you know, (unintelligible) died of AIDS. So I just want to be safe, just to make sure.
HELD: But not everyone is like Dell. Dr. Gregory Pappas, who heads up the HIV/AIDS Administration for the city's health department, says 20 percent of residents who are infected have no idea.
DR. GREGORY PAPPAS: So in D.C., that means four or 5,000 people are out there on the streets, living their life, HIV positive and spreading disease. Half of new infections come from people who don't know their status.
HELD: But the city is making some progress. Not a single HIV-infected child has been born here since 2009, and new infections among intravenous drug users are down 70 percent since 2006. Yet, there's no doubt AIDS remains a huge problem in Washington, D.C.
PAPPAS: We have two or three people infected every day in the District of Columbia.
HELD: And most of them are in the African-American community. Between 2006 and 2010, newly diagnosed HIV cases - not AIDS - rose about 20 percent among blacks, yet fell nearly a third among whites. So what accounts for the disproportion?
PAPPAS: It's actually poverty and lack of education.
HELD: And while Dr. Pappas says a third of people in the city do get tested each year...
PAPPAS: I think it needs to be about two-thirds. We're getting there. We've got to make testing normal.
HELD: Which brings us back to Dell Tory. That man who decided to get tested - he tells Alicia Barbour he's had unprotected sex, but he's ready to hear his results.
BARBOUR: The result is you're negative.
BARBOUR: So (unintelligible)
TORY: (Unintelligible). I'm going to keep this (unintelligible). Thank you for your time.
BARBOUR: No problem.
TORY: Appreciate it.
HELD: Dell Tory falls into a high-risk group, but he's been lucky so far. He knows that. He says he'll be back to get tested in a few months.
RAZ: That's NPR's Amy Held reporting on the situation here in Washington. Nationally, there is some reason for optimism. Jeffrey Lennox is a leading AIDS researcher. He's based out of Atlanta's Grady Memorial Hospital. And when he began his career 30 years ago, the AIDS epidemic was just beginning to take shape.
DR. JEFFREY LENNOX: There was a huge need for physicians who are willing to take care of patients, because at that point, all we knew was that it was infectious. We didn't know how easily it was transmitted from person to person. And there were literally young men in their 20s dying every day in the hospital, and I was just drawn to try and help do something about that.
RAZ: What were those first few years like when you decided this is what I'm going to do? I mean, were you seeing people dying in hospitals weekly, monthly?
LENNOX: Yes. I mean, taking care of patients at that point, once we knew how to diagnose it, basically everybody I took care of died.
RAZ: It was managing their death.
RAZ: When did you start to see a change, the change from people being diagnosed of HIV knowing that they were going to die to knowing that they were going to live?
LENNOX: The amazing transformation was in 1995 when the first triple-drug combination was available. And literally, I saw people who are on their deathbeds discharged from the hospital within a month.
LENNOX: It was the most amazing thing, and it's still amazing. We still get people who come in at the end stages of AIDS, and if we catch them in time, many of them are restored to normal health.
RAZ: So where is the state of AIDS research today?
LENNOX: For therapeutics, we have amazing combinations of drugs. We don't have a cure. So we're talking about lifelong therapy to suppress the infection. And most people will do just fine. We estimate that the average person who goes on treatment and suppresses the infection will live about 30 years. But I also tell them that it's up to them. You know, humans aren't robots. We're not programmed to take pills every day for the rest of our lives 100 percent of the time. And that's what HIV treatment requires.
RAZ: My understanding is you can treat HIV/AIDS to the point where it is almost undetectable in the human body.
LENNOX: Yes. But at Grady, we still have 200 people a year die of AIDS. The treatment is wonderful. It's amazing. But actually, getting people on treatment is still very, very hard.
RAZ: The CDC is saying that just about a quarter of those people who are infected in this country have their virus under control. So what can be done? I mean, how do you address the 75 percent of those who are not seeking treatment - getting the treatment that they need?
LENNOX: Well, of the remaining 75 percent, about a third don't know they're infected. So we need to make testing as easy as getting your blood pressure tested at a drug store, for instance, so that there's no barriers to testing. The other third don't want to go into care. They're afraid that if they go to the doctor that they'll then become ill. And the remaining third are in care, but they're not reliably taking their medication. So we have to develop innovative solutions for each of those three populations.
RAZ: You started out as a young physician when this epidemic began. Do you think when your career is over, you will see a cure?
LENNOX: I don't think in my career that we're going to see it. There has been one person cured, so we know it's possible, and people are working on it with new scientific tools. So there may be a breakthrough sooner than expected. People are optimistic because we have the tools, but we don't have a blueprint or any construction equipment. You know, we know where we want to go, but we don't know how to get there reliably.
RAZ: That's AIDS researcher Jeffrey Lennox. He's also a professor at Emory University in Atlanta. Now, back in the 1980s and early '90s, an HIV diagnosis was a soon-to-be a death sentence. It's the fate that Olympic diver Greg Louganis thought he'd face when he discover he was positive in 1988. He revealed it years later in an autobiography. But in 1988, he decided that he tell almost no one.
GREG LOUGANIS: It was a really scary time because my thought was if I was diagnosed HIV positive, then I was going to do the honorable thing and pack my bags, because I was training in Florida, and I was going to go back to California and lock myself in my house and wait to die, because that's what we thought of HIV at the time.
And so my cousin, who is my doctor, was treating me, and he wanted to treat me very aggressively. So they put me on (unintelligible) right away. He talked me to continue training. And so I did. And, you know, I just kind of move forward. It was really a blessing for me at that time because diving was much more positive to focus on than my HIV.
RAZ: When your book came out - and this is just 17 years ago - even at that time, there was a little bit of a backlash. I mean, you lost some sponsorships, and some people condemned you for not having revealed this earlier during the Seoul Olympics. Were you surprised by the reaction at the time?
LOUGANIS: No, no. I wasn't really surprised. When you come clean of secrets, I mean, there's going to be some backlash. But you know what, there was a lot of education that was happening at the time. People needed to learn how you get HIV, but also important to know how you don't get HIV, and you're not going to get HIV from a chlorinated pool. You know, really, the only person that I put in harm's way was the doctor.
RAZ: This, of course, is a doctor who treated you when you hit your head on the diving board...
RAZ: ...who sewed you up. He, of course, he did not test positive for HIV. You went on, of course, to dive - up that diving board 22 minutes later, ultimately winning gold at that Olympics.
LOUGANIS: Yeah. I mean, there was - it's one of those blessings that it doesn't seem like a blessing initially. But going into that Olympic Games in 1988, I was the favorite. I mean, I was expected to win. And then when that happened in that split second, I became the underdog. And, you know, it was probably a place that I needed to be in order to be a successful at that Olympic Games.
RAZ: How have public attitudes changed towards people who are HIV positive now from the time that you first revealed this in 1995 and when you first learned about it in 1988?
LOUGANIS: There's been a huge shift as far as awareness and understanding, but there's also a lot of misinformation as well. With young people - and it really concerns me, because they do see, you know, these healthy people - appealingly healthy people, you know, like myself, Magic Johnson, and the medications are better. Yes, people are living longer. Yes, we're having to worry about retirement in old age and all that stuff. But I wouldn't wish my drug regimen on anyone. So they shouldn't really think of it as a manageable condition.
RAZ: That's Olympic gold medal diver Greg Louganis. He's headed to London where he'll be mentoring Olympic diving hopeful David Boudia. And we'll hear more from Greg about that a little later in the program.
And you're listening to ALL THINGS CONSIDERED from NPR News. Transcript provided by NPR, Copyright NPR.