Access to HIV Drug Therapies Remains Limited Ten years ago, Rob Phelps felt as if he were hanging on to life by a thread. But a turning point in AIDS treatments -- a triple-drug regimen -- changed his life. It was a major milestone, but also a costly one. Today, only 20 percent of those who need the treatment have access to it.
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Access to HIV Drug Therapies Remains Limited

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Access to HIV Drug Therapies Remains Limited

Access to HIV Drug Therapies Remains Limited

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This week, more than 24,000 people will gather in Toronto for the Biennial International AIDS Conference. They'll be observing two important milestones: it's 25 years since the AIDS epidemic was first recognized in American gay men, and it's 10 years since researchers devised drug regimens that transformed AIDS from an invariably fatal disease to an infection that can be held at bay indefinitely.

NPR's Richard Knox looks at what that has meant and how far the world is from delivering effective AIDS drugs to the millions who need them.

RICHARD KNOX reporting:

Rob Phelps is a trim, healthy-looking man in his early 40s. He lives where the long arm of Cape Cod curls back towards the mainland.

Mr. ROB PHELPS (AIDS Victim): We are at the very tip of Cape Cod. It's actually right out there. This is Provincetown's Harbor.

KNOX: Strolling on the beach on a bright summer day, Phelps muses on how Provincetown itself has been changed by effective treatments for AIDS.

Mr. PHELPS: Provincetown used to be a place that they said, you know, men with AIDS came to die. And I think I was right on the turn of when we started coming out here to live.

KNOX: That was a turning point for thousands of people with AIDS. Rob Phelps' story, with all its twists and turns, mirrors theirs. Ten years ago, he'd reached his lowest point.

Mr. PHELPS: My normal body weight is 165 and I was down to 113. I was very, very close to dying. I felt like I was holding on to a little thread of life.

KNOX: Phelps' friends called his parents and said they should arrange for hospice care. His doctor, Cal Cohen(ph), says Rob was within months of dying.

Dr. CAL COHEN (Physician): He was wasting away. His friends looked at him waste away from a healthy, robust, muscular man, to somebody who was losing weight rapidly, and we couldn't stop it.

KNOX: Weight loss wasn't his only problem. He had virtually no immune system. That allowed infections to run rampant. One virus destroyed the sight in his right eye. Doctors prescribed a series of strong drugs, but each one produced only a temporary stalemate. Cohen says a graph of Rob's immune function would show a series of decreasing peaks and deepening valleys.

Dr. COHEN: Rob would look just like a rollercoaster that started at 10,000 feet - a normal, healthy immune system - and then through a series of curves and dips, would just get lower and lower to ground level. And then every once in a while something would come along that would bounce it back up the hill. And then the immune system would lose ground again, because HIV figured it out.

KNOX: The AIDS virus proved to be very nimble, mutating into many drug-resistant forms. Back in 1995, AIDS doctors all over the country were seeing that in other patients, over and over and over again.

Dr. COHEN: That rollercoaster is what we went through with thousands of patients. And unfortunately, we all knew what was at the bottom of that road, which was a very ugly death. AIDS is an ugly death. AIDS is a serious of infections and none of them are pleasant. They were diarrhea in bed. You were going blind. You were choking from a pneumonia we couldn't control. Your esophagus closed off from a fungus that just grew so big that you just couldn't swallow. It was a series of miserable deaths, brain growths, tumors, infections.

KNOX: Then, in the midst of those dark days, there was a sudden shaft of light. Early in 1996, AIDS doctors were buzzing about a few patients whose downward course was stopped when they got a cocktail mixed from three drugs. By the summer of '96, those preliminary results were confirmed at the International AIDS Conference in Vancouver.

Cohen says the three-drug combination was like a brick wall in the path of the virus.

Dr. COHEN: Each drug, if they were part of a three-drug combination, if that combination was started simultaneously, could go from a series of temporary stalemates to a wall high enough that HIV couldn't jump. That's where the world changed.

KNOX: But it wasn't easy to build that wall. And it had to be rebuilt every single day. Patients had to take as many as two or three dozen pills a day, on complicated and exacting schedule, or the wall would crumble.

Mr. PHELPS: Okay. This is my drug cabinet, anyway. It used to be the whole thing, but now it's just this little area.

KNOX: What do you mean, the whole thing?

Mr. PHELPS: Oh, this whole closet used to be filled with pills and things that I needed to take.

KNOX: Like other AIDS patients back then, Phelps struggled to stick to the regimen, and the drugs began to gain the upper hand over the virus. But they also made him sick.

Mr. PHELPS: I stopped taking them on a regular basis because I was getting so sick just by taking them. I mean, I would actually throw them up.

KNOX: Then, another problem emerged. Rob and thousands of others began developing a strange new side effect. Again, Cal Cohen.

Dr. COHEN: Within a year, our conferences became filled with posters of the side effects of that combination, in which people became disfigured, in which they had lipodystrophy, and fat was growing in their neck and growing in the belly and losing in the face and losing it in temples and losing it everywhere on the arms and legs. So that you started to look much sicker than your numbers suggested.

KNOX: It was a painful period. Anger often bubbled up at scientific meetings. Activists berated scientists and drug companies. Frontline doctors pushed researchers to come up with better regimens. Eventually they did. One day six years ago Phelps got a call from a nurse who works with Cohen.

Mr. PHELPS: A nurse called me and said, there's this new study that's going on. Your study's failing you. You've gotta come in here tomorrow, 9:00 a.m., and just be there and see if you can get into this.

KNOX: Phelps was one of the first patients to benefit from a new type of drug that prevents HIV from getting into immune cells. It became the cornerstone of a new three-drug combination that's restored him to good health. Even though he has to inject himself with the new drug twice a day, Phelps says this regimen is much simpler. Now his drugs take up just one shelf of that big closet. But good health doesn't come cheap. He opens a file cabinet that contains his medical bills.

Mr. PHELPS: It's gonna take me a minute to dig this out here. Let's see. Prescription costs, $4,997.53 for one month.

KNOX: Or $60,000 a year.

Mr. PHELPS: Yeah, right. So, you know, talk about guilt and responsibility, you know?

KNOX: Phelps is lucky. He lives in Massachusetts. The state supplements federal AIDS funds, so virtually all patients get what they need. Other states don't do this, so patients are on waiting lists for AIDS drugs. And Cal Cohen points out that while caseloads have increased, federal money hasn't.

Dr. COHEN: It's a reprehensible moment in U.S. history, to realize that in our country we still have decided that there are some people who are too poor to be worth it.

KNOX: In developing countries there's been some progress. About a million and a half people with AIDS are getting triple-drug treatment. But that's only about twenty percent of the people who need it. Meanwhile, five million more people get infected with HIV every year. So without billions more for AIDS treatment, the world will fall farther and farther behind.

Dr. COHEN: AIDS has always been a magnifying lens on the inequities of the world, and continues to be one.

KNOX: Cohen says it comes up at AIDS meetings all the time. Researchers from rich countries present evidence on new AIDS drugs - as they will this week in Toronto - but doctors from developing nations say they only have access to one regimen, if that.

Dr. COHEN: If you have somebody whose virus isn't controlled on that combination, or who the side effects are limiting, there's no Plan B.

KNOX: Still, for some people the transformation of AIDS treatment has been one of medicines most remarkable achievements.

(Soundbite of seagulls)

KNOX: Ten years ago Rob Phelps thought he'd never walk on a beach again.

Mr. PHELPS: When I started to get better, this was the beach that I walked on. And just breathed the air and kind of feel the famous healing energy of Provincetown.

On my 40th birthday, you know, which was a couple years ago now, people were saying, wow, you're 40, how does that feel? You know, that's terrible. You know? And I'm like, no, it's not. This is incredible. This is, you know, this is a huge milestone. You know, this is great success. And now let's see about 50, you know.

KNOX: The challenge at this year's AIDS Conference, and for the foreseeable future, is how to deliver that success to the rest of the world.

Richard Knox, NPR News.

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