WAR ON AIDS
MARCH 5, 1997
An update on the war on AIDS and the impact of the latest drugs developed to fight the disease. Spencer Michels reports
JIM LEHRER: Now an update on the war on AIDS and the impact of the latest drugs developed to fight the disease. Spencer Michels reports.
SPENCER MICHELS: Like thousands of people with AIDS, 52-year-old Krandall Krause of San Francisco goes through the ritual of taking 20 pills several times a day on a rigid schedule.
KRANDALL KRAUSE: That's the only way I can do it. If I take them one at a time, I'd be here until Tuesday.
SPENCER MICHELS: Krause, who is a writer, takes a combination of medicines that includes a protease inhibitor, a new class of drugs that foil the ability of the AIDS virus, HIV, to reproduce itself. Before those drugs became available Krause and others were convinced that all they had to live for was the present.
KRANDALL KRAUSE: I thought, well, my life is coming to an end. So most of us didn't deny ourselves anything. We went on trips. We bought things. We bought new televisions. We bought a new car. We'd help our friends.
SPENCER MICHELS: Krause's health improved dramatically, but with a new lease on life, thanks to protease inhibitors, he has had to adjust.
KRANDALL KRAUSE: All of a sudden you have to put on the brakes. It's very different. You have to start thinking--you have to start budgeting your money. You have to start finding things that you're interested in doing. I'm active enough so that I can sit at the computer for a couple of hours at a stretch and the time that I've started taking the protease I've finished a novel, I've finished a play, and I've started two new books.
SPENCER MICHELS: Many HIV positive patients are now coping with the reprieve of what only recently seemed like a death sentence. Just two years ago 19 patients in Dr. David Senachek's practice of 600 people with AIDs died; last year, only four. But patients like Marcus Wonacott and Andy Pesce aren't sure how to handle the extra time that's been handed them.
MARCUS WONACOTT: All of a sudden, bam, I've been plunged into the whole idea of I'm not going to die tomorrow, next week, or next year. Most likely, I'm going to have a fairly long life again. That is a wonderful, exciting thing to have, but it creates the whole dilemma of now, what am I going to do with my life?
ANDY PESCE: We were preparing for the end. And it's going to take some time for us to reintegrate ourselves into mainstream life. We have three options essentially: stay on disability, go back to the employer where you were before to continue your previous benefits, or jump off a cliff and look for a different job with no benefits and the possibility of getting very ill again, because without these medicines, there's no illusion here, we're completely dependent upon the protease inhibitors and the other medicines we take.
SPENCER MICHELS: There are other complications. For one, there hasn't been time for long-term studies of the new drugs.
KRANDALL KRAUSE: Everybody thinks that because of protease inhibitors we should be happy, and initially you are. And then you realize you're out in no-man's land again. You're taking a drug. You're feeling good. And any day, it could end.
SPOKESMAN: Nofinivir, Thyrimmune, Thydex, and Xered all are four specifically for HIV.
SPENCER MICHELS: Doctors do know that if a very strict regime of pill taking is not followed, the virus can develop resistance and the pills won't work. 42-year-old Bill Sprick, a computer expert, complies to the letter, but so far, the protease inhibitors have not worked for him consistently. In fact, about 30 percent of people with AIDS have not been helped by the new drugs, especially if they have taken a long series of other AIDS medicines. Sprick hasn't given up. He's now on an experimental protease inhibitor.
BILL SPRICK: It's a roller coaster. You feel really great when it looks good, but then when the numbers come crashing down, you get pretty depressed. It's like, oh, no, here we go again, this is another one that doesn't work. And I think the thing that right now is worrying me the most is I've taken all the drugs that are presently available that are released, plus I'm taking one that isn't released, and it's kind of a time game.
SPENCER MICHELS: Unlike Sprick, 32-year-old Danny Cohen, a radiation therapist, essentially gave up on protease inhibitors because they made him feel worse.
DANNY COHEN: I was exhausted all the time and nauseous. Basically, my entire quality of life was gone. I was on vacation in Amsterdam, and I just decided not to take ‘em anymore, and three days after I stopped, I felt great.
SPENCER MICHELS: Cohen says it's easier just to accept the notion that he will die.
DANNY COHEN: I'm certainly not interested in having a prolonged period of suffering, or a prolonged period where I feel so bad about myself because of my health status that I don't want to be out in the world, or something like that. So I don't think of death as really that bad of a thing.
DR. MARCUS CONANT, AIDS Specialist: I know what happens if you don't take the medication. Those patients die.
SPENCER MICHELS: Dr. Marcus Conant, a pioneer in the treatment of AIDS, hates for anyone to give up on protease inhibitors. He thinks the new drugs may be the way to stop the spread of HIV, which now infects 1 million people in the United States.
DR. MARCUS CONANT: We perhaps can stop the transmission of this disease and ultimately eliminate AIDS in the United States. Now, that's not going to work in China, in India, in Africa.
SPENCER MICHELS: Protease inhibitors have yet to have an impact on the millions of infected people outside North America and Europe. That's because of their high cost, up to $25,000 a year. In the United States, the tab is often covered by insurance companies, at least most of it.
AIDS PATIENT: Right now for me it comes out to about $800/$900 a month in co-pay.
SPENCER MICHELS: Co-payments.
AIDS PATIENT: So, I tell you, this stuff is doing what it's supposed to do, so we really have no choice about it.
SPENCER MICHELS: For those without insurance but not on Medicaid state and federal assistance programs pay for the drugs. But even in the U.S. there are road blocks. Some states, unlike California and New York, have not allocated enough money to get the drugs to all those who are HIV positive. And some people, like the illegal drug users living in San Francisco's Tenderloin district, are not regarded as good candidates for the medication.
DR. MARCUS CONANT: Where are the diseases going to go, is in the under-served, drug-using community which is huge in this country, who do not have either the resources or the skills to utilize these new tools.
SPENCER MICHELS: Mesha Irizarry works in the Tenderloin for a social service agency.
MESHA IRIZARRY, Shanti Project: A lot of our clients are active users and have no intention to stop drugs.
SPENCER MICHELS: Do you try to get these people on protease inhibitors, or other drugs?
MESHA IRIZARRY: We inform them. It's tricky because we don't have the--
SPENCER MICHELS: Irizarry says the need to take the new drugs regularly makes this clientele difficult to manage.
MESHA IRIZARRY: There is obscene poverty, lack of hygiene. Protease inhibitors require that people take them faithfully four times a day. If there is any speed or crack involved, of course, they're not able to maintain a schedule. If they get off the schedule, they develop a resistance to the drug, therefore, they're no longer a candidate, and they will surely die.
SPENCER MICHELS: Nearly 3/4 of the residents of the rundown Ambassador Hotel, where Irizarry often sees clients, have AIDS, mostly contracted through illegal drug use. For these people there have been no new leases on life, no worries about how to handle the reprieve. In fact, protease inhibitors play no role in the lives of people like 41-year-old Robert Brightshue.
SPENCER MICHELS: They say this can save your life.
ROBERT BRIGHTSHUE: I know, I know, I know. When I start getting down, I'm going to get on it, but they say once you get on it, you got to stay on it, you know. And I'm not prepared for that.
SPENCER MICHELS: Why are you unprepared for it?
ROBERT BRIGHTSHUE: I'm just--I'm afraid of it right now. I'm afraid of it because I'm afraid if something's going to happen--it can backfire and you can be immune to it, or it won't work anymore. You know what I mean?
SPENCER MICHELS: Some here don't trust the government, doctors, or, like Lee Burnside, the medications. San Francisco Health Director Dr. Sandra Hernandez, herself an AIDS specialist, does not think doctors should routinely withhold the new drugs from patients they consider irresponsible.
DR. SANDRA HERNANDEZ, San Francisco Health Director: One of the public health's responsibility in this arena is where people choose to take them but are poorly organized, for whatever reason, to do so, that we devise programs to be able to support that. And, in fact, we've done that in San Francisco.
SPENCER MICHELS: For poverty-stricken and more well-to-do AIDS patients alike, taking protease inhibitors remain fraught with uncertainties. Researchers and health officials are still learning how to use the new drugs and are planning to issue new guidelines for HIV therapy later this year.