Meet Tony Mills, M.D., an HIV-Positive HIV Specialist and Former International Dr. Leather
"Going to work, in that clinic in 1985, was so hard because everyone I diagnosed got sick, and I didn't have anything to offer anybody. I was just starting off my career in medicine, and I had gone into medicine because I wanted to help people," says Mills. "There I was, at the beginning of the whole HIV thing, and I thought 'God, I really need to do HIV work.' But then when I started doing it, it was so difficult, because I would look at these people who were my peers, and give them the diagnosis, and see them die within a year."
When he found out that he himself was positive in 1987, it was like looking at his own mortality every day, and psychologically he just couldn't do it, it became more than he could handle. So he went back and trained and practiced in anesthesiology for about 10 years. "And I loved doing it, but I always felt like I had failed, that I wasn't strong enough to be an HIV doctor, and that was really what I was supposed to do. In '99 I finally made the decision that this was what my life was supposed to be about and I wanted to give this a shot, and so I moved out to L.A. and opened a practice out here."
Mills is open about his own status with his patients, and has been since the mid-nineties. In 1998, he won the International Mr. Leather (IML) contest in Chicago. "When I did the IML stuff," says Mills, "for me that was really emotionally about the fact that I had just gotten on a triple drug combination in 1996. My virus had been suppressed to undetectable levels, and my T-cells, which had been at 35, began moving up from there. I started feeling better, and gaining weight, and exercising more, and thinking about going back to work, and I wanted to carry that message to other people -- that there was hope."
When asked if he feels being positive gives him any special insight, whether his patients can perhaps trust him more, Mills replies, "I think they do trust me more -- I have patients who come and see me from all over the world. I always tell them, 'Look, I have a lot of friends out there, that are really good HIV specialists in your city.' But they come to me for a variety of reasons. They come to me because they want to see a gay man, and they can't find a physician in their city who's gay and can understand them. Or they may come to me because I'm positive. Or they may come to me because of my experience in the leather community, and that's an aspect of their life that they think is important, or they don't feel comfortable talking to their doctor about it, and they need to be able to talk about their behaviors and the risks that are involved there, and what precautions they need to take.
"So all of those things that I had fear about in the past that might keep people from coming to see me are now the things that actually bring them to my office, and make them feel comfortable there, and make them feel like I understand, and they can really open up and talk to me about who they are."
Mills believes in order to provide the best possible care it's as important to understand his patients' psychological health as it is their physical health. And he firmly believes that providers need to be comfortable having frank and open dialogue with their clients about risk behaviors and recreational drug use. He says that sometimes it's easier for providers to not delve beneath the surface and talk about what's really going on with their patients.
"One of the most exciting groups that we have meeting in L.A. is the HIV-positive over 50 group. There's a waiting list because there are all these guys out there who find it's hard to connect with people, for whom disclosure is still an issue, and some of them have been on medications that have long-term side effects. And aging is compounding the lipodystrophy effects that we got from the medications, and it's a difficult situation to face."
While he sees a lot less lipodystrophy in his practice today, and doesn't even consider it a real problem, Mills admits that's probably because he lives in L.A., where they've been on the cutting edge of cosmetic treatments over the years. Southern California was also very early to jump on the bandwagon of getting people off of the offending agents, such as Zerit, and making changes in people's regimens. "When I travel to talk to people in locations in the middle of the country or in more rural areas, I'm always shocked when I walk into a room full of HIV-positive men in Kansas, and I see the ravages of lipodystrophy. But in L.A., and I think in New York and Chicago, and the big areas where physicians are more keyed into the issues, I think it's becoming less of an issue. I think the new drugs are definitely less toxic, we understand which ones tend to cause the lipodystrophy, and which ones are safer. I really believe when I start patients on a new regimen, certainly my naive patients, I can start them on a regimen that has a low incidence of side effects."
In New York City in the 1990's, Mills regularly attended a group for HIV-positive physicians who came together for support. Today, they all kind of know who each other are, but he's continually surprised by those who he may have known for years, who come in to see him and are HIV-positive. "It's really a burden, to have to carry that around by yourself for so long."
Says Mills, "When someone first tests positive, I give them a lot of information on the first visit. But I tell them I don't expect them to remember everything, except that this diagnosis tells me absolutely nothing about the duration of your life, or the quality of your life -- those things are totally in your hands, just as they were before your diagnosis. What it does tell me is that if you're conscientious, and take good care of yourself, you'll probably be seeing me more often, and we'll be monitoring your bloodwork, and taking care of your immune system, and there may be a time when you need medications.
Charles Farthing, former director of AIDS Healthcare Foundation, taught Mills something that he says has been really beneficial when talking to patients about their therapy.
"What he does with his new patients, when he's starting therapy, is tell them, 'We're going to start this therapy. And you may come to me and say, I want to change therapy, and I'm going to listen to you, and I'm going to consider that, and we may make some changes. I may come to you and say, I want to change therapies, and I'll have my reasons, and we can discuss that as well.' "
It establishes the relationship at the beginning of therapy, says Mills -- that this is an evolving science, and fortunately, it's evolving in the right direction.
Mills, who served on the national board of the American Academy of HIV Medicine (AAHIVM) for about five years, stepped down about a year ago in order to devote more time to his practice and research. But he's still an active member and supporter of the organization. "It's really important that people with HIV be taken care of by HIV specialists. I've heard some horror stories of people who have been mismanaged, and the thing is, you can do some real damage to people with HIV. You can take somebody with wild-type virus, who is placed on an inferior regimen, and suddenly they have two- or three-class drug resistance, and now you're talking about Fuzeon.
"I think that credentialing is very important. Even if you're working in Boystown in Chicago, and only treating gay, white men, you still need to know about the differential effects of the drugs on racial groups or gender differences. The credentialing process emphasizes the fact that providers need to be taking care of a significant number of patients, and staying current -- there is a big emphasis on continuing education."
Mills sometimes lies in bed awake at night, thinking about what can be done to stem the tide of the epidemic.
"How can we really stop the spread of HIV?" asks Mills. "I give more HIV diagnoses now than I did 20 years ago. Maybe people have less fear of it, maybe they have safe sex fatigue, maybe they're longing for a more intimate connection with other people and they feel that having safe sex prevents that from happening. But how are we going to stop more and more people in our community from becoming positive?"
One of the ways, suggests Mills, is if the medications that we have now are truly better and better, and turn out to be, as we hope, less and less toxic, maybe we should put more people on medications. "We certainly know that the likelihood of transmitting HIV is less if people's viral loads are undetectable, and maybe putting more people on medications might be beneficial for stemming the spread of the epidemic, I don't know. But I just think that we really have to start looking within our community, because I'm really tired of giving HIV-positive diagnoses to highly intelligent men in their forties, who have been able to negotiate the path of safe sex for so many years, who have just given it up. I don't know how to convince them that it is something that's important -- it seems to have lost its weight."
Mills loves the clinical research and care that he is able to provide, and expects he'll still be practicing medicine 10 years from now, provided he himself remains healthy -- and there's no reason to think that he won't. And with the second- and third-generation drugs now available or in development -- some that may even only have to be taken once a week -- and looking at the synergy between these new agents, and how they can best be used together, Mills says that the next 10 years will continue to bring increased optimism and hope.
"I feel so fortunate," says Mills. "I get up every morning and I can't wait to go to work. I love my life, and I love my practice -- I can't see myself doing anything different."
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