Michael Gottlieb: Right now, I have a private practice, largely in HIV medicine here in Los Angeles, at Synergy Hematology and Oncology. I have two associates, Phillip Musikanth and Alex del Rosario. Between us, we probably care for about a thousand people with HIV.
The Discovery: Remembering 1981
Nelson Vergel: Let's flash back to 1981 for a moment. I would love to hear details about the day you actually found out about this strange immune disease that you didn't have a name for. Can you tell us a little bit about how that happened?
Michael Gottlieb: Sure, Nelson. It happened innocently enough in the course of a teaching exercise with my post-doctoral fellow at the UCLA Medical Center. I was an assistant professor of medicine, trying to teach the residents and fellows something about immunology.
I asked this particular fellow to go on the ward and ask the intern or resident if we could see a patient, just for teaching purposes -- in other words, if they had any patient with an illness that had immunologic features we would be interested in seeing, purely for the exercise of discussing the patient and learning something about immunology. From my perspective, it was an opportunity to teach the trainee something about immunology.
So the trainee, the fellow who was studying allergy and immunology, went onto the ward and was allowed to see this first patient named Michael, who was a 31-year-old, gay man who had been admitted through the emergency room with weight loss and fever. The patient also had candidiasis [thrush] and, within a week, developed pneumocystis pneumonia.
The intern correctly recognized that the patient must be immune deficient, and that was the reason that he pointed the patient out to us. So that was our very first patient with what came to be called AIDS.
Nelson Vergel: How did you and your team determine the cause of this person's immune deficiency?
Michael Gottlieb: Well, we scratched our heads as to what he might have. His white cell count was low. He had candida, as I've mentioned. And he had pneumocystis pneumonia. It was just such a striking, dramatic illness, and he was so critically ill. It was a distinctly unusual thing for someone previously healthy to walk into a hospital so significantly ill. It just didn't fit any recognized disease or syndrome that we were aware of.
We were fortunate in having access to T-cell testing technology. We determined that he lacked CD4 cells. There had never been a condition described before -- or, for that matter, after -- in which CD4 cells were so conspicuously absent.
Within a few weeks, Joel Weisman and other doctors referred us more patients who fit the mold. They all had pneumocystis pneumonia. We tested their T cells, and they were all CD4 deficient.
That's when we wrote up the report to the CDC that was published in the MMWR, Morbidity and Mortality Weekly Report, on June 5, 1981, and which turned out to be the first report of AIDS as a new disease in the scientific literature.
Nelson Vergel: How long did it take to find out that it was actually a viral illness?
Michael Gottlieb: We speculated in our paper, which was published in The New England Journal of Medicine in December , that this was a potentially transmissible immune deficiency, and we had proposed a viral cause. However, it took two years for the virus to be discovered by Françoise Barré-Sinoussi, Luc Montagnier, and Jean-Claude Chermann at the Pasteur Institute. They described LAV, lymphadenopathy-associated virus, which we now know as HIV-1.
What they did was culture material from the lymph node of a gay man with swollen glands. They cultured his lymph node with human T cells as a culture medium, based on the observation that CD4 cells go missing in people with HIV. The CD4 cells were able to nurture the virus, and they were able to isolate it. They won the Nobel Prize for that a couple of years ago.
Nelson Vergel: Back then, we didn't have a viral load test yet.
Michael Gottlieb: That was a dramatic development in the mid-1990s, the viral load test, which allows for the measurement of the amount of virus in the blood. And that's when we realized that that became a very important benchmark for success in therapy. Now, these days, I'd say that an undetectable viral load is the gold standard of success in therapy, irrespective of what happens with the CD4 count.
Watching an Epidemic Unfold
Nelson Vergel: During those few years in which you basically were scrambling to find out what the causal pathogen was, what were you doing? Were patients coming to you every day from all over? Were you taking phone calls from around the country?
Michael Gottlieb: Well, we were sent quite a few patients in consultation. And we were trying to characterize the different syndromes associated with the virus. In other words, we had a sense from the numbers of people referred that cases of advanced AIDS represented just the tip of the iceberg of whatever we were dealing with, and that there was this large base of the iceberg -- people with oral thrush, just oral thrush and swollen glands, and people who simply fell ill with a viral illness, when we were trying to characterize those illnesses. We were trying to classify the varieties of what we now know as HIV disease. And we were trying to scramble to find money to do the research, which was difficult in those days.
Nelson Vergel: Yeah. Those were the days of Ronald Reagan.
Michael Gottlieb: They were. There just was not a lot of passion in that administration for helping people affected by HIV.
Nelson Vergel: I guess until Rock Hudson came out with his illness; and you were Rock Hudson's doctor, right?
Michael Gottlieb: I was. Randy Shilts, in his book And the Band Played On, speaks about the sea change that was associated with Rock's illness. He says that the history of HIV in America can be divided into pre-Rock Hudson and post-Rock Hudson. Because after Rock Hudson, people finally got it that something bad was happening and that it was something that they ought to have an interest in.
Nelson Vergel: Although many people still associated HIV with a lifestyle, or with drug use, more than associated it to a viral illness. Even years after the discovery of the virus.
Michael Gottlieb: Absolutely. The association of HIV with the gay population is kind of an accident of nature and sociologic history. In other words, HIV did not start in the gay population and probably was in the United States well before we came upon it in 1981. And I think the virus got introduced [to the wider population] around the time of gay liberation in the '70s and '80s, when people were having sex with a lot of different partners. It was just unfortunate that the virus got into the population at that point in time, and got amplified there. In the early years of the '80s, many people became infected unknowingly.
I have to say that the perception that HIV/AIDS was a gay disease has hung on in the public mind. Of course, the reality is that a tiny percentage of the 33 million people worldwide who have HIV are homosexual. There's clear evidence, scientific evidence, that it did not start among gay people.
The continued stereotyping of the disease leads people to think that it's someone else's problem, that they are somehow isolated from HIV, or immune from contracting it; and it really contributes to public apathy, which is rampant these days. The 30th anniversary is just that; it does not mean that the HIV/AIDS epidemic in America is over. It's very much ongoing.
The Future of HIV Treatment, the Cure -- and Access to Both
Nelson Vergel: Did you think back then that, 30 years later, we would still be looking for the cure for HIV?
Michael Gottlieb: Really, I had a feeling back then that our description of AIDS as a new disease was going to be a big medical story. But I really couldn't have imagined that our first few patients would be the first recorded cases in this epidemic that's lasted 30 years, and still has no end in sight.
As you're probably aware, the Institute of Medicine estimates that by the year 2050 there will be 70 million people in the world living with HIV, up from the estimated 33 million today. That is, of course, unless we develop an HIV vaccine, which is a necessity. It has to be a number one priority.
Nelson Vergel: I agree. I totally agree. And even now, with so many drugs on the market, only 30 percent of people who need medications have access to them.
Michael Gottlieb: I'm very concerned about what's happening. The apathy on the part of the general public. The apathy by both federal and state politicians who have what we call "passion drift" with regard to adequately financing people's access to HIV medication.
There are situations in which there are waiting lists for state ADAP programs, AIDS Drug Assistance Programs. I think, as of last week, the number of people on ADAP waiting lists was almost 8,000. And states are reducing the number and types of drugs they're going to pay for. Some states have stiffened the financial eligibility requirements, capped enrollments, or removed some people who are already enrolled in ADAP programs. That's so self-defeating, to deny access to HIV medication.
Nelson Vergel: Especially now that we have some good data that shows that starting HIV-positive people on treatment earlier not only makes them less infectious to others, and can be one of the best tools to prevent the spread of HIV, but it's also better for their immune response in the long term.
Michael Gottlieb: Absolutely. It's a humanitarian thing to help people preserve their immune systems. But it's also a colossal miscalculation of public health policy not to give people medication to get their viral load undetectable, and then to reduce their risk of passing HIV onto others.
Nelson Vergel: Are you at all excited about what's happening with immune-based treatment, with the case of this Berlin patient that got cured of HIV? How do you see that case shaping the future of research?
Michael Gottlieb: I'm very excited about it. I think the Berlin patient is an important proof of principle. And the principle is that you can, in fact, eradicate HIV in someone who already is infected. Yes, it's just one case, but they did it.
The treatment in this patient's case was very radical, and it could have been fatal to him. Now scientists in a number of institutions are working on safer ways to achieve the same result. I'm very excited about the potential for finding a safe way to eradicate HIV.
Nelson Vergel: A safe and also cost-effective way that could be provided to everybody around the world. It's really sad that we have one pill a day, for instance, for HIV treatment [Atripla (efavirenz/tenofovir/FTC)], and yet most countries around the world don't have even access to that coformulation in 2011.
My concern as an activist is, if we do find a cure, it may take us more than 30 years to provide it to the entire world, given how long it has taken us to provide HIV medications to all who need it.
I'm also concerned about the cure being owned by pharmaceutical companies that may not want to release its patent. So I'm already foreseeing some critical fears when it comes to cure research. I think this needs to be discussed as we move deeper into the world of cure research.
Michael Gottlieb: Well, you've had a lot of experience, Nelson, and I admire you for taking the long view. On the other hand, we have this marvelous technology already for treating HIV infection and suppressing HIV infection.
As you point out, I think it is essential to extend the gains to the rest of the world. Fifteen thousand people die every day of AIDS, malaria and TB [tuberculosis] in Africa. And it's kind of "out of sight, out of mind" for most of the American public. I think it's important for AIDS activists here, like yourself, to continue to advocate on behalf of everybody affected by HIV in the world, not just our U.S. population.
Dr. Gottlieb the Activist; Remembering Elizabeth Taylor
Nelson Vergel: Talking about Africa, I was reading on your Web site, michaelgottliebmd.com, about your involvement with the Global AIDS Interfaith Alliance project. Can you tell us a little bit more about that?
Michael Gottlieb: Thank you, Nelson. This is something called GAIA, on the Web at thegaia.org. It is a nonprofit founded by Bill Rankin in San Francisco that works in the villages of Malawi, Africa, providing AIDS relief and other services.
It's been in existence since 2003, and it has several functions. It provides care to orphans; it helps village women with employment, testing and care; it provides microloans to village women so that they are economically more independent of men there; and it also sponsors nursing scholarships for girls from the villages to go to nursing school and become economically independent and part of the health care workforce there.
We also have the Elizabeth Taylor Mobile Health Clinics program, which Elizabeth funded to provide Land Rovers to go out through the villages to do HIV testing and provide other medical services.
GAIA is an organization in which I'm very confident that funds donated to it get where they're supposed to go.
Nelson Vergel: Were you a friend of Elizabeth Taylor's? How did you come about meeting her?
Michael Gottlieb: I met Elizabeth in the context of her visiting her friend, Rock Hudson, when he was at the UCLA Medical Center. I would accompany her on visits to Rock. I was fortunate in being one of the very first people to help educate her about HIV/AIDS.
Following Rock's death, together we founded the American Foundation for AIDS Research, with Dr. Krim in New York. Elizabeth became the national chairwoman of amfAR. And we continued to be in touch over the years. When I got involved with GAIA, I asked for her help and, as usual, she was there and ready to help.
Her loss is an incredible loss to the HIV/AIDS community. No one was ever better suited to be our advocate. She had all the glamour, the international fame -- and, most importantly, she had the heartfelt commitment to this cause.
Nelson Vergel: I know. It was a huge loss for the HIV community this year.
Are HIV Doctors a Dying Breed?
Nelson Vergel: One more question: I want to switch topics a little bit. I've been reading, and I've been talking to different doctors around the country, about the concern that HIV as an actual specialty has been abandoned by many doctors. New doctors who are coming out of medical school are not really specializing in treating HIV.
Do you have any concerns about HIV treatment and care in the next few years in the United States, as the trends show that more and more doctors, experienced doctors like yourself, are no longer practicing in HIV? You're one of the few, by the way, who haven't left the field; we're lucky to still have you.
Michael Gottlieb: I feel a little like a dinosaur. I think the workforce of people who know about HIV treatment -- that is, doctors and PAs [physician assistants] and nurse practitioners -- it's a substantial workforce. I agree, and I worry that few young doctors are entering the field of HIV medicine. We have to do everything we can to encourage that.
But on a more basic level, I worry that the trend toward integrating HIV health services into general health services has some drawbacks. I'm an unapologetic proponent of HIV/AIDS exceptionalism. The reason for that is that the populations who are disproportionately affected by HIV are unique: They're frequently marginalized. They're often poor. And they're going to be underserved or neglected by any kind of approach that lumps HIV/AIDS in the context of general health services.
I think it's fine to have HIV health services in the same building with a general clinic. On the other hand, a dedicated staff -- as you point out, knowledgeable about HIV/AIDS -- is going to be necessary to choose the right treatments and, more importantly, to keep people in treatment. Because one of the hazards in marginalized populations is that people will drift out of care. And that will be damaging, both to the patients and to potential sexual partners or drug-using partners who may be exposed to the virus because those patients were not retained in treatment.
The last thing is that -- particularly in this era of budget cutting, concerns about health care expenditures, and cutbacks in ADAP -- I just think we're courting disaster by underfunding programs and, of course, in the long run, by not replenishing our HIV workforce.
Aging and HIV
Nelson Vergel: Last, but not least: It's been 30 years. A few of us, like myself, have been positive for over 25 years; we are getting older. In your practice, are you seeing any aging-related issues that seem to be showing up a lot earlier in some of us who have been positive for a while, now that it's more of a manageable disease -- not for all of us, of course, but for some people who have access to treatment?
Michael Gottlieb: Well, you're very young at heart, I know. But in all seriousness: About 20 years ago, I said that my greatest wish was to be able to grow gray with my patients. And it looks like I'm getting it. Yes, there are some issues with HIV, such as earlier onset of coronary artery disease in some patients, osteoporosis related to both HIV and some medication --
Nelson Vergel: Maybe a little cognitive loss.
Michael Gottlieb: Potential cognitive dysfunction. There are some special problems associated with HIV and aging that we have to address aggressively. In my practice, we address blood pressure, smoking cessation and hyperlipidemias [high levels of fat in the blood] aggressively to try to keep our patients as healthy as possible, and we try to reduce the risk of other illnesses causing morbidity.
So the practice of HIV medicine these days is now very much like a general medical practice: not quite gerontology, but with many similarities. We're much more focused on the whole patient and not just the virus.
Nelson Vergel: And by the way, you don't look any older. Actually, you look a lot better. I'm looking at your picture with Elizabeth Taylor from the '80s, when you had a mustache and glasses, big glasses. You actually look better now, 10 years later.
Michael Gottlieb: Thank you, Nelson.
Nelson Vergel: So you may be grayer, but you still have some hair. You still look healthy.
Michael Gottlieb: And I'm not quitting. I'm still very much in the business.
A "Common Cause"
Nelson Vergel: We really need people like you. Is there anything the community can do to support you and doctors like you who have been with us for so long? Sometimes, I don't think we say thank you enough.
Michael Gottlieb: I've had plenty of thanks. Early HIV doctors did what Dr. Paul Farmer calls "making common cause with the sick." We made common cause with our patients. In other words, we basically found ourselves in the early '80s kind of in the same boat as our patients: powerless. And we formed these coalitions of doctors and patients. And you and I still collaborate to move the agenda forward, both medically and politically. It's been just a very rewarding and positive experience for me to do that.
Nelson Vergel: You're one of the best doctor activists that I know. We need more activists from the medical community to support activists that are out there trying to make change happen.
Michael Gottlieb: Well, no. I think we need more activists like you. I think there's this sense, even among AIDS activists -- some AIDS activists, not you -- that we've come far enough, that we have what we want, we have medicine that is going to allow most people here to live a nearly normal life span.
But that's not enough. There are frontiers. There is a frontier for medication and pre-exposure prophylaxis. And there are social issues, like ADAP, that people really should be angrier about, and advocate for.
Nelson Vergel: Definitely. It is no time to be sitting down and assuming everything's OK, because it is not.
We really appreciate your taking a long time with us. Please just know that this community is behind you, supports you; and a lot of us have been following your work since day one. We're lucky to still have somebody like you advocating for better treatments and more access for people like me, living with HIV, both the newly diagnosed and the long-term survivors. Thank you so much for your time today.
Michael Gottlieb: Thank you so much, Nelson.
This transcript has been lightly edited for clarity.