Heather Dron, MPH, HIV InSite: What were you doing when the epidemic started (the early 1980s)?
Marcus A. Conant, MD: I was practicing dermatology at the University of California San Francisco (UCSF) and running the inpatient dermatology service. I had been in practice for about 18 years at that time.
"What was the first indication that this might be a new epidemic?
|"If you're an astronomer, and you see a new planet, chances are you're going to get very interested in that planet."|
There was no first indication that it was a new epidemic. It took us a long time to realize that we had an epidemic. If you see an unusual case, there's no flag that goes up like the little flag that pops out of the turkey that says it's done. You think you have an interesting case and that's about as much as you know. The first case that I saw was shown to me by a colleague, Dr. Jim Groundwater, and he announced that he had a patient who had an usual disease called Kaposi sarcoma that dermatologists had known of for about 100 years at that point, but it was an exceedingly rare disease, so rare that the average dermatologist was expected to see one in a lifetime, and he had such a case. That statement was due to the fact that I was giving a lecture on the herpes viruses to the Grand Rounds and mentioned that I had received a call from a colleague in New York, Dr. Alvin Friedman-Kien, and he said that he had seen a cluster of patients in Greenwich Village with Kaposi sarcoma, which is really rare. I commented that we needed to see if we had such patients in San Francisco. Jim Groundwater put up his hand and said, "I have one upstairs right now in the hospital." That was the first case I saw. It was April 1, 1981.
Were Kaposi sarcoma patients usually referred to dermatologists or oncologists?
|"...we said, the most important thing they could do was go out and get health insurance. We didn't realize that was probably the most important thing we possibly could have done, but in retrospect, sad as it is, that was probably the best thing we ever did."|
They weren't referred to anybody. The disease was so rare, that most people who were developing Kaposi sarcoma would see their doctor and be told, "It's an unusual bruise, or you burned yourself some way. You don't remember how, and I don't know what this is, but you don't need to worry about it." Biopsies were sometimes taken from the lesions and even the dermatohistopathologists, the doctors charged with reading the biopsies, would not make the correct diagnosis. And so, in response to the first couple of cases that I saw, I did what we were doing at the time at UC, which was starting a specialty clinic to try to gather up these cases for further study. I had started a clinic to look at patients with genital herpes 10 years earlier, and that was the typical paradigm when we were confronted by a new disease. I started what was called the Kaposi sarcoma clinic one morning a week and we then put our advertisements to doctors and pathologists and others in the community, saying that if they saw such a case we would appreciate it if they would refer the case to us for further evaluation. Like most things that happened with AIDS early on, word of mouth actually was the way we got most of the cases. It became known that we were studying it in the community. The gay community in San Francisco is not a small community, but it is a very, very interconnected community in which a lot of information is transferred from one person to another. Consequently, through word of mouth, patients started coming to us, and we collected a huge number of patients and began the studies that led to the clinic at San Francisco General, the clinic at UC, and my clinic. A lot of seminal studies were done on Kaposi sarcoma in the early 1980s.
What attracted you to this field?
|"Let's be blunt, it was objectionable because the Catholic Church opposed the concept that people would use condoms."|
If you're an astronomer, and you see a new planet, chances are you're going to get very interested in that planet. If you're a dermatologist and you see a disease that you're only supposed to see once in a lifetime, and you're now seeing it once a week, chances are you're going to probably get extremely excited. "What is this?" "Why is this?" "Why am I seeing this?" It wasn't really an attraction as much as a logical outcome of who I was and what I was doing. And of course, I had been interested in sexually transmitted diseases for years. At that time, we weren't absolutely certain that it was sexually transmitted, but it was a disease occurring in gay men, and so it didn't take a whole lot of brains to realize that somehow gay men were transmitting this to each other. And we weren't seeing it in straight men. As I said, I had been interested in genital herpes for almost 2 decades and had actually worked in the Haight Ashbury Clinic, seeing some of the first patients with genital herpes in 1964, '65, and '66, and here we were 20 years later one valley away (one was in the Haight Ashbury and this was in the Castro) with another sexually transmitted disease that was breaking out. There wasn't anything "attractive" per se, it was just a normal progression of my interest in sexually transmitted diseases and one that was manifesting as a skin disease. You should understand that in the first couple of years of the epidemic, 85% of AIDS cases were skin related, were Kaposi sarcoma. This was obviously a disease that dermatologists would be extremely interested in pursuing.
List some major successes and/or missteps of HIV/AIDS advocacy and research efforts.
Let's start with successes, and there have been very few. Frank Jacobsen, Richard Keller, and I started an organization that over time became the San Francisco AIDS Foundation. Others have taken that and made it very successful. I wouldn't point to that as a success. What we did do was open a hotline where gay men, or anybody who was concerned, could call for whatever information we had about the disease. One of the things that we decided to do as part of that effort--and it was Frank Jacobsen who did that, not myself--was to ask these patients whether they had health insurance. If they said "no," which was very common for 20- to 30-year-old men, we said, the most important thing they could do was go out and get health insurance. We didn't realize that was probably the most important thing we possibly could have done, but in retrospect, sad as it is, that was probably the best thing we ever did.
|"I regret that I decided to live in California rather than in Manhattan. Had I known that there was going to be an AIDS epidemic and that I could play a role in trying to stop that epidemic, I clearly would not have chosen to live here because you can't have any impact in the federal response to anything living in California..."|
The second thing I did that I'm pleased about was work with Dr. Jay Levy, who's a virologist at UCSF. I was the one who demonstrated that condoms would block HIV from being transmitted. It wouldn't go through a condom. The reason that was significant was not the science, as anybody could assume that if condoms can block herpes they probably can block AIDS and everything else. The reason that was important was because you could not talk about condoms in the press. The New York Times, the San Francisco Chronicle, NPR--nobody would mention the word "condom" because we were told that, quote "They appeal to a family audience and it would be objectionable to use that term." Let's be blunt, it was objectionable because the Catholic Church opposed the concept that people would use condoms. It wasn't really prurient interest on the part of the newspapers or their readers, it was the pressure from the particular religious sect. It occurred to me that, if they couldn't talk about something like condoms, perhaps they could talk about science. So, if I did the research and showed that the condoms worked, they could print that as a scientific article and use the word "condom" because there was no objection to that. And so it was research that was done for a political purpose, but it was successful and now we do talk about condoms in the public media, and so I view that as a success.
The third thing that I feel good about was that we realized that we had to go outside the NIH, the university system, and the traditional funding systems to get money for research into this disease. This was a stigmatized group, no one wanted AIDS patients at their hospital, and the federal government was loathe to spend the kinds of money that we needed. At that point, the federal government was spending something like 8 million dollars a year on AIDS research and when you asked them to list the research they were doing, they would list any research that was even vaguely related, such as research on viruses that are transmitted sexually. That's not focused research on this problem. They were lumping everything that could possibly fit under that rubric as AIDS research. So I went with a group of others to Willie Brown, and Carol Migden was very instrumental in helping us facilitate that meeting. The Speaker allowed us to come to Sacramento and bring together a group of researchers who came up with what we thought was an appropriate budget to initiate AIDS research at UCSF, Stanford, and the other universities in the UC system. That was $3 million for the first year, which Willie Brown got approved in 1983. Brown used his considerable political currency to get the Democratic and Republican caucuses to approve it. The Speaker literally said, "This is personally important to me and I want to see it pass." That money has grown to well over $150 million that the state of California has given directly to AIDS research. And this research has been seminal because a lot of the studies that were later been funded by the federal government and by pharmaceutical companies began as small investigator-initiated studies at the university level, often even by graduate students. And that money was the seed money that funded the research. And so that initiative back in the early 1980s was also important in initiating subsequent flow of money.
Now, to name the things that I regret most. I regret that I decided to live in California rather than in Manhattan. Had I known that there was going to be an AIDS epidemic and that I could play a role in trying to stop that epidemic, I clearly would not have chosen to live here because you can't have any impact in the federal response to anything living in California, unless you do nothing except legislate and work as a lobbyist. If you live in Manhattan, you can fly down, testify before Congress, fly back, and have dinner with your family. If you live in San Francisco, that's at least a 2-day, and usually a 3-day, trip. Anything that you do here has to be done locally and set the model, the agenda, if you will, for other states to emulate. And that's not to be disparaging. That's simply to say that you don't have any direct impact. I cochaired the California AIDS Leadership Committee, and Dr. Don Francis, who has been very pivotal in much that's been accomplished, was at the CDC at the time. He and I literally decided that we couldn't do it in Washington for a variety of reasons, one of which was that we were too far removed from Washington. So, we decided to work in California and try to set models that would be emulated throughout the country, and to a degree we were successful. But if I had it to do over, I would have not chosen to be this far away from where the actual power is wielded, and that's in Washington.
My second greatest regret is that I did not do more to help focus attention on the seriousness of the problem. Part of that was naiveté. With most viral diseases, most people survive the disease. For example, in a polio epidemic, 2 percent of the people end up paralyzed; 97% of the people come out unscathed. The "iceberg effect." Early in the epidemic, we thought this was what we were going to see. Yes, we had something that was spreading and was spreading rapidly. We had something called the "lymph node syndrome"--people with swollen lymph nodes. We thought that only a small percentage of those would progress on and die. Well, as you know, that was not the case. Untreated, probably upward of 95% of the people die. That was the second greatest regret, not being even more of a Cassandra than I was in trying to mobilize a response to the epidemic.
I guess the third regret was that I had a lot of patients early on who were prepared to give up and die. I often went to great pains to convince them not to do that, and I subjected many people to incredible suffering, which I sincerely regret. They were making the right decision, there was really nothing we could do. They were right to give up. Forcing someone to try to continue to live, based on the hope given by the doctor whom they respect to just hang on and "we'll have something," condemned them to months of suffering that was unnecessary. I think of that often and regret that I did not know what I know now, which was that it would have been better to support their desire to terminate their lives.
What are the major issues facing HIV researchers and policy makers today?
The major issue facing research is that the virus is at this point smarter than we are. This virus is a formidable adversary. To date, we have really not identified a conserved epitope. We really don't know where this virus is vulnerable, where you can attack it and kill it, wipe it out. More importantly, we do not have a vaccine so that if someone is exposed to HIV, the patient's own natural or acquired immune defenses will destroy the virus. It's rare in human history that we've had agents that are so formidable an adversary, particularly when you've thrown at it the resources that we have.
|"The major issue facing research is that the virus is at this point smarter than we are."|
Another major problem is the press. The press often doesn't spend the 5 minutes needed to understand what's being said, or they ask a question that solicits a response that doesn't fully comprise the complete answer to the question. For example, a new drug comes along and the press will say, "This isn't a cure, yet," and the implication in that statement is that a cure will be possible. Or the vaccine isn't the answer yet, or "we think it will take another 10 years." Comments like that are terribly misleading because the implicit suggestion is that a cure is possible or that a vaccine will be here in 10 years. The 10-year time frame just comes out of the air. No one knows how long it will take. So they should just say that we don't know how to make a vaccine now and that we don't know how to approach the question of making a vaccine. And we don't know that a vaccine will ever be possible. We hope and people pray that a cure will be found, but we don't know that will happen. I like to point out that we've had leprosy around at least since Jesus was here. We have leprosy, tuberculosis, and malaria, and we don't have a vaccine or a cure for those diseases. So, what makes you think that we're going to have one for AIDS? What makes you think that 10 years from now we'll have a vaccine? Right now, we don't have a cure and we don't know that we'll ever have one. We've been working on artificial blood for transfusions for 40 years and we don't have it. Those are the kinds of information that we should be giving the public, not this kind of veiled hope that there's something just right around the corner when that's not the truth.
The social obstacle is the stigma. This began in the gay community, or among gay men--there is no "gay community." This began with gay men and that stigma not only is present in this country, it is present worldwide. If a woman in South Africa gets HIV in a small community, she's stoned to death. Why is she stoned to death? Because she has contracted a "sinful" disease. Biblical historians describe the same phenomenon with leprosy: It was a sin, something being visited on someone by the Almighty because of perceived transgressions. And that's still there, that's still present. I'll relate a quick story.
My mother had surgery many years ago and I flew to see her and it turned out that she had thrush in her mouth following the surgery, which happens following surgery, particularly in elderly people. She said, "Look at this and tell me why I can't talk." I looked and said, "You've got thrush in your mouth." I continued and said, "Mother, remember, you had a transfusion in 1984, and that was before we were testing the blood. You could be HIV positive." She said, "That's occurred to me." I said, "Why the hell didn't you tell the doctors to test you for HIV?" I said, "What do you want to do, embarrass me? Here your son is an AIDS expert and you're dying from AIDS, what the hell is this?" and she said, "I don't want to find out if I'm positive, because none of my neighbors would come see me again." This was in Gainesville, Florida. And I said, "That's right, and if one of them got AIDS you wouldn't go see them, would you? And she said, "No." Now, I'm not trying to disparage my long-dead mother, but I'm pointing out that this was a woman who was a college graduate, the daughter of a federal judge, and the mother of an AIDS expert, but that stigma was still there. Sure, it's like racism, we don't talk about it very much, but we know that it's still here. Our hope is that we're getting over it. That's the biggest obstacle that we have socially. If you mention AIDS, there's a mentality that "they deserve it" or that "we should spend money on helping other people," or some other kind of silly notion. While I'm on a rant, let me finish. There's a large group of people that we call evangelical Christians or the Christian right--and please quote me on this. These people object to us eliminating sexually transmitted diseases and unwanted pregnancies. Why would they do that? Why would a caring group of people who believe in salvation, redemption, and forgiveness oppose curing sexually transmitted diseases and preventing pregnancies? The answer is they like to use those diseases as threats and weapons to intimidate their children into not having sex. They say, if you have sex, you will catch syphilis, or herpes, or AIDS, or warts, or hepatitis, or any of the 37 sexually transmitted diseases. So, one of the major barriers we have to AIDS research is a group of people who oppose trying to stop these diseases and the reaction of our legislators who either knowingly or subconsciously realize that this group is part of their constituency and they have to accede to their wishes. Why have we not eliminated syphilis, gonorrhea, herpes, and a whole litany of sexually transmitted diseases, including HIV? The answer is that there's no funding for it, there's no will for it, and there are groups of people who oppose it.
|"Why would a caring group of people who believe in salvation, redemption, and forgiveness oppose curing sexually transmitted diseases and preventing pregnancies? The answer is they like to use those diseases as threats and weapons to intimidate their children into not having sex."|
You may say, Marc, are you nuts or is there any reality to this? Here's the reality. We have in this country a vaccine that prevents the types of warts that cause cancer. It's called Gardasil and it's an HPV vaccine. It was approved for use in girls. It was not approved for use in boys. Why was that? Little boys get warts. As a matter of fact, where do they think little girls get warts from? Toilet seats? Little girls get warts from little boys! Or older boys. Why was it approved for girls and not for boys? Your answer may be, "It wasn't studied in boys" and so the question is, "Why wasn't it studied in boys?" This had to pass the FDA advisory committee, right? Little girls get a cancer from warts, so the vaccine is being used to prevent a cancer, right? Little boys, as far as we know, don't get cancer from warts. So again, the Christian right argued that if you give it to little boys, it will only increase the likelihood...
That's the best example as to why we can't really put the resources, the energy, and the enthusiasm behind stopping these diseases. I continually make the appeal. Many of these diseases aren't just venereal diseases, they cause cancer. Warts cause cancer, hepatitis causes cancer. A whole bunch of these diseases are linked to serious cancers, many of which are fatal. Your kid may have sex, and you may really regret the fact that he has sex at age 14, which is when they become sexually active. You may disapprove of who he had sex with, how he had sex. You may disapprove of the whole thing. He (or she) may even wake up the next day and say, "My God, why did I do that?" And we all do that, all the time, but he or she shouldn't have to die because of a human instinct that led them into what is viewed as a mistake in judgment. And that's where we stand at the beginning of the 21st century.
What is the most important lesson moving forward?
|"The mother's milk of research, policy, and social change is money. And the money comes from the legislative bodies. And the legislators, often well meaning people, don't know a thing about the subject that you may be an expert in... If you don't go and meet and sit down and have dialogue with your legislators, you're not going to get the support and funding and have a chance to give background information."|
The mother's milk of research, policy, and social change is money. And the money comes from the legislative bodies. And the legislators, often well meaning people, don't know a thing about the subject that you may be an expert in dealing with. If you don't go and meet and sit down and have dialogue with your legislators, you're not going to get the support and funding and have a chance to give the background information that is necessary. And there are other special interest groups that may well be spending their time blocking what you're trying to do. So they most important thing is, without money, it can't happen, and the money comes from Sacramento and Washington and the time that you spend trying to educate and inform your legislators and policymakers is probably the most important thing that you can do when you're not sitting at the bench. If we don't work at it, our legislators, lawyers, and the people who make important decisions will have opinions--they just won't be informed opinions. It's our job to be certain that they are informed decisions. In my experience, these people are more than open to listening and hearing what you have to say. They're desperate for knowledge, but we say, "I'm a doctor, I don't have time to go to Sacramento to talk to some legislator," and that's the biggest single mistake you can make.
Do you think that HIV has fundamentally changed the way that we think about and research infectious disease?
Yes. It was being predicted that infectious diseases had been conquered, prior to the AIDS epidemic. And now we realize that that's not the case. Bacteria and viruses are much cleverer than we thought, and we've seen the emergence of MRSA and a variety of other pathogens that we thought we had the tools and cleverness to combat. So, as we continue to breed on this planet, and become more and more crowded and more and more forced into small areas, the microorganisms are going to be a formidable foe. So, yes, I think we are seeing a resurgence of interest in microbiology and research on bacterial and viral diseases.
Let me hasten to add, the problem is that the big pharmaceutical companies do not view it in the same way, and let's use a quick example. If you're a big pharmaceutical company, why would you not want to work on a new antibiotic that would kill MRSA? The answer is, it's probably going to take 10-15 years to get from the bench to the pharmacy, and that's going to cost hundreds of millions of dollars. In all probability, if the drug really works, the patient will only need to take it for 2 weeks, right? Furthermore, if it really works, it will probably be used on a limited basis because we don't want doctors overprescribing it and giving rise to another resistant bug; so more and more we're saying we only want certain gatekeepers to advocate the use of this drug. If you were a CEO of a pharmaceutical company, would you want to spend a billion dollars to develop something that's going to attack MRSA with all those limitations, or would you want something to lower cholesterol that everyone would have to take once a day for the rest of their lives? Unfortunately, the marketplace determines where we put our research dollars and how we utilize them. So I think we're in agreement that bacterial and viral diseases are going to play an increasingly important role in our lives. The weapons against those diseases are playing a smaller and smaller role because the reimbursement for those is limited. And this is one of the places where socialism, if you will, needs to play a role. There's nothing wrong with capitalism if there's a reason for something to make a lot of money for a lot of people. Let the drug companies make all the money they want on Valium, sleeping pills, cholesterol-lowering drugs, or any of the things that people need to take long-term. But when you have something for which there's a pressing need, and there's no incentive in the market, that's when government needs to step in and either supply the funding or come up with an innovative way to make it rewarding for the drug companies to do it. Instead of saying that you get a 17-year patent for a drug that cures MRSA, you get a 100-year patent for this drug. There are ways. With the stroke of a pen, Congress could incentivize drug companies to work on this. We have not gotten to that point yet.
What are some of the findings from HIV research that benefited research into other diseases?
The examples are multifold, so I'll just take one. We didn't understand protease inhibitors until AIDS came along, so because of work on AIDS, we've opened an entirely new field of research that is now being applied to other diseases. A notable case is hepatitis C, which affects 3.7 million Americans, and the first drug out of the barn is a protease inhibitor that blocks the replication of hepatitis C. All the money that we're spending on AIDS research is not just focused on AIDS. As with knowledge in any sphere, it translates into many, many other areas of human endeavor. It's the same with space exploration; we wouldn't have Velcro if we didn't have the space program. Consequently, anything that gives us knowledge can advance man's understanding of diseases and how to try to conquer them.