Joel Gallant, M.D., M.P.H., is not only a widely respected HIV clinician and researcher: He's also an online HIV expert, spending some of his free time answering questions about the virus. He's been doing this since the early days of the Internet. He's so good at it that he's just had a book published that pools together some of the most important questions he commonly answers. Called 100 Questions and Answers About HIV and AIDS, it's geared mainly for people with HIV who want to learn more.
Welcome, Dr. Gallant! Thank you so much for taking the time to talk to me.
My pleasure Bonnie, good to be back.
I can't remember when it all started. I just remember it was not only the dark days for HIV, but for the Internet as well. I remember being on AOL. I think I was one of their charter subscribers. There was this chat room or bulletin board about HIV with all sorts of horrible misinformation going around and I started answering questions. I said I was an HIV doctor, but I don't think I said who I was. People started depending on me to respond. Then I started getting hundreds of e-mails in my inbox every day from people who had a lot of questions about HIV. I had to stop doing it because it just became overwhelming.
Do you remember what kinds of questions were being asked at the time?
Most of these people had HIV and were asking questions about their treatment, about their symptoms and about testing -- the kinds of questions that they either weren't getting answered by their physicians or maybe they didn't have HIV expert physicians taking care of them.
Some of the questions were about fear of HIV from the "worried well" -- people who were worried that they had HIV. But mostly it was from people who had HIV. I kind of put that aside and then, while in Nantucket on vacation, I met Jamie Marks who had an idea to start a Web site for people with HIV called "The Body." He asked me if I'd be willing to write articles and stuff like that. I said, "On AOL there was this need for answering questions. What about doing an interactive, 'ask the doctor' sort of thing?"
So we did that. It was certainly the first online interactive Q & A for HIV, though I don't know if it was the first one for other diseases. Initially, I was the only one on it. Later they started adding additional faculty and I had to move my forum to the Johns Hopkins Web site when they opened that up. That was how it all got started.
Do you remember whether the questions you got at The Body were any different from the questions you were getting on AOL?
They were pretty similar, except that on The Body there was more stuff coming from people who were not necessarily HIV positive but were afraid that they were infected. So we were getting a little more of the wacky questions. The AOL bulletin board had been focused on people who were already positive. We got a broader diversity of questions from a more diverse audience.
It was a very exciting moment in the world of HIV when you started answering questions at TheBody.com.
Yes. 1996 was a real high point. At the same time, HIV suddenly became more complex. The decisions that you had to make, the impact of those decisions and the importance of making correct decisions became even more important now that there were drugs that we could use to really treat HIV effectively. It was an interesting time to be answering questions because we were all learning at the same time. Certainly people with HIV were being cared for by a diversity of doctors, some of whom were quite expert and others who were not. Of course, that's true now too. So it was a very exciting time to be doing a forum.
Wasn't it also very exciting because the prognosis for someone with HIV had quickly reversed?
Yes, exactly. It was amazing to see people go from what they thought was a terminal illness to suddenly going back to work and feeling good and returning to life. Sometimes the questions were not so much about treatment as about things like: How do you adjust to this sudden change in your prognosis?
Of course, we all think of it as a good thing, and it is, but it's pretty challenging too. If you haven't worked in years and you've planned your finances assuming you weren't going to live very long, and now all of a sudden you've got a whole life ahead of you, it presents some challenges -- even though it was a wonderful, wonderful turn of events.
Were you seeing this in your daily practice at Johns Hopkins as well as online?
Oh, yes. Absolutely. Yes. It was interesting to watch these adjustments take place. I think a lot of us physicians were so excited about the medical results that when our patients started coming to us, sometimes depressed or guilt-ridden or talking about relationships breaking up, we at first didn't understand the impact of such a huge change in prognosis.
I eventually learned that good stress is still stress. Even though this was all good news, it was presenting big challenges for a lot of people and there were all sorts of emotions that were unexpected -- both from my standpoint and also from my patients' standpoints -- that came about as a result of this good news.
What was the most surprising thing you discovered when you began answering questions online? Was there anything that surprised you that you hadn't seen in practice in your clinic?
I don't deal with very many HIV-negative people in my practice. Everybody I know has got HIV. By the time I see them, they usually already know they have HIV. I'm not dealing with all these people who think they have HIV or are afraid they have HIV. I learned a lot about the depths of paranoia, hypochondria and sexual guilt.
I also learned all sorts of things about some interesting sexual practices that I'd never even considered before! Everyone wanted to tell me what they were doing sexually in order to get them worried about HIV. The descriptions of their activities were sometimes rather graphic, and were often things that I wouldn't have thought of before.
That is an interesting kind of record that The Body and Johns Hopkins now have on their sites. We have all these interesting sexual practices occurring in the United States and in the world.
Yes, I guess it's a good thing for those people when you think about it; there's probably a Web site for every one of those behaviors. In the old days, before the Web, they probably thought they were just a solitary pervert; now they know they have company. [Laughs]
What was interesting to me too was that most of the questions that I seemed to be getting about fear of HIV were coming from straight men whose risk was actually quite low. The people who had the highest risk for HIV generally weren't obsessing about it. I wasn't getting a lot of questions from HIV-negative gay men who were worried about having HIV. Mostly, it was from people who were extremely unlikely to be getting infected.
What do you think is the reason for that? Why is that population so terrified of HIV?
I think there's a combination of reasons. Some of these people are doing things that they feel guilty about. Maybe they're having sex with men that they don't want to talk to their female partners about.
In other cases, I think there are a lot of people who are clearly obsessive compulsive who spend a lot of time on the Internet. They obsess about their worries and fears, and they'll post things on any Internet site until they can get somebody who will contribute to their fear even more, which starts a spiral.
My way of dealing with these people was generally to make fun of them. That served two purposes. One was that maybe by ridiculing their concerns I hopefully reassured them that they weren't at great risk. At the same time, it provided a sort of entertainment for the more legitimate users of the site, since we could have a little fun with them.
Not to minimize their concerns but frankly, when somebody's had 20 HIV tests in the last six months and still believes they're positive, you have to draw the line somewhere.
Do you think many of these worried well people have psychological issues, or are they just still deeply ignorant about how HIV is transmitted?
Many of these people had seen multiple doctors, all of whom had told them that their concerns were unfounded. They've read everything they could read. So it's not a matter of ignorance, it's a matter of psychopathology.
There is a lot of ignorance too. I especially see it coming from young people; I see it coming from questioners in developing countries where there may not be much discussion of this. I try to address those questions in a more straightforward fashion, if it's just pure ignorance.
Not that the information isn't out there for people to find, but if they choose to try to get answers to their questions by asking me, I do the best I can to try to educate a little bit. Again, remembering that my sites, both when I was at The Body and now at Hopkins, are really meant for people with HIV, I have to be careful not to answer too many questions from worried HIV-negative people because it ends up cluttering the site and makes it less useful for the people for whom the site is really meant -- which are people with HIV. I'm sure there's a need out there for that kind of thing, but that's not what the site is meant to do.
How many years have you been answering questions online?
I would say since '96. That thing I did on AOL only lasted for a few months and was unofficial. I've been doing it continuously since 1996. The site at Hopkins is quite similar to what I did at The Body.
How do you still have the energy to answer questions?
Some of my readers tell me I'm not as good as I used to be, or let me put it this way: I'm not as funny as I used to be. I used to spend a lot of time trying to come up with creative and entertaining answers to the crazy people.
The archives at the Hopkins site contain, and you probably have them too, hundreds of entertaining questions. They're not always entertaining because of what I write; sometimes they're just entertaining because of what the questioner writes.
I have to say I've cut down on that because, as fun as it was, it got repetitive and it also encouraged a lot more crazy people to write in to me. I do a little less of that and as result I know my site now is informational, but it's a little drier and probably not as amusing.
I tell people who complain to go back and read the favorites again and they'll find stuff that'll make them laugh. But it is a time-consuming job if I try to respond to all those types of questions.
How many questions do you answer every day?
It's come down a little bit. I would say maybe I answer five or six a day on average, maybe a little less. The reason I think it's less now is in part because people are doing so well.
A lot of the questions I used to get were from people who were either having horrible side effects from drugs or their viral load wasn't suppressed and they were trying to get information. Probably people are having fewer side effects and they're less likely to be failing their therapy and they've got better things to do than to send me questions. I think that's a good thing; the need for the site is a little less than it used to be.
Let's turn to your new book called 100 Questions and Answers About HIV and AIDS. What made you want to put this book together and who's it geared for?
My original idea had been to go through the archives from the Web site and pick a mixture of educational and informative questions and answers as well as entertaining ones and have a book that was full of both types -- you could look up what you needed to get information, but then you could always have a laugh reading some of the entertaining stuff.
I proposed that to some publishers, but they either wanted me to write a textbook or they wanted me to change things. One publisher said, "Well, we really like your book, but we don't want you to talk about sex." I said, "You can't really talk about HIV and not talk about sex." They said, "Could you take out the word 'blow job?'" I said, "We could argue about that."
Anyway, the bottom line was that none of those worked out. I got approached by a publisher that has this series of books called 100 Questions and Answers About "x", about whatever disease. I was stunned to learn that, after all these years of publishing these books, they didn't have one about HIV and AIDS. Since this was similar to what I had had in mind, I agreed to write the book.
The hard part was finding exactly 100 questions and not more and not less. Even though I couldn't include the really wacky stuff in there, I did try to keep the tone light and entertaining so that people weren't going to feel too bogged down with a heavy, overly serious book about this disease.
I see that the book is geared for people with HIV, who have questions.
Yes. It's really meant for people who have HIV. When I was writing it, I had in mind the person who just found out they're positive and really doesn't know anything. I wanted to write a book for that person. The first few chapters are really, "What do you need to know right now?" Then it goes into more detail about things, after you've learned the basic things you need to know.
It has real basic information: "What does HIV do? What's a CD4 count? What's a viral load? What's the difference between HIV and AIDS? Why isn't there a cure?" That kind of thing.
We also go into issues about medical care: "How do you deal with your doctor? How do you find a doctor? What kinds of tests should you be getting? What kinds of vaccinations? When do you start treatment? What kind of treatment? Why do you need to be adherent? Why can't you stop treatment?"
We go into side effects, toxicity and the opportunistic infections. Then, also, I have sections about women, pregnancy, coinfection with hepatitis C, depression and things like that. There are basic sections about how you live with HIV: "Can you travel? Can you have pets? What can you eat? What can you drink? How do you have sex? How do you deal with HIV-negative partners?"
I think of it as pretty comprehensive. When I was done with it, it was hard for me to come up with any questions that I was missing, although I'm sure somebody could think of some.
I thought it was interesting that you included questions such as, "How do we know that HIV wasn't created in a lab?"
[Laughs] I got to the end and I had a chapter called, "Questions for Those Who Still Have Questions." I dealt with a lot of these conspiracy theories. "How do we know that HIV causes AIDS? How do we know it wasn't created in a lab? How do we know the drug companies haven't developed a cure that they're just keeping secret?" People who believe those types of theories are not the types of people who are going to read my book.
I wanted to try to dispel some of those myths because we've got more important things to do than get bogged down in things that are clearly not true. But I didn't want to ignore those sentiments or those concerns, because I know there are a lot of people who still believe in those theories.
Do you find, either on the Web or in practice, that there are still theories that the drug companies are withholding a cure?
I don't see that so much in my own patients because, after all, by coming to see me you could say they've accepted the establishment view about HIV and they're voting with their feet. But when I talk to patient groups or lay audiences I still hear some of those concerns. I certainly get it on my Web site.
There are still a dwindling number of HIV denialists out there who think that HIV doesn't cause AIDS. It's sad because what I see is that the belief in these theories can really be damaging. It causes a lot of people to avoid the health care system, to avoid medical care. I've seen people die as a result of a belief in these theories. I think it's not just a curiosity to talk about them. I think in a book like this we really have to deal with anything that could get in the way of people's willingness to accept medical care that is life saving.
How do we know that the drug companies aren't withholding the cure to make money?
A lot of people think, "My God, the epidemic's been going on now since 1981, shouldn't we have a cure by now?" I point out that we really don't have a cure for any viral disease, with the possible exception of hepatitis C and we don't cure that very often. All other viral diseases get better by themselves, or stay latent like HIV does and remain chronic, or they kill you. There's no surprise there.
I point out that people who develop therapies at drug companies are not the executives, they're the scientists. While they may be motivated by profit, they are also still motivated by the things that motivate scientists: Nobel Prizes, the respect of colleagues, getting published in journals, being interviewed on Oprah or getting more funding. I can't imagine that a scientist would obey an order by a drug company CEO to keep a cure quiet, since that would be such an amazing accomplishment.
Drug companies are really competitive. They want to be the first and if you're going to develop a cure, you're going to want to be the first one out with it. Remember, if you've got a cure, probably some scientist at another drug company is pretty close behind you. You're not going to just sit on it, waiting for that other company to put the cure out first! You're going to want to be the first one out. In the end that's going to increase your profits because a cure is probably going to be expensive. Whoever comes out with it first would make the most money.
I would also point out that one of the arguments that people make for this idea that drug companies actually have a cure is that if you cured HIV it would be cheaper and instead of getting lifelong profits, people would get better and they wouldn't have to take drugs anymore.
That might be true, but you have to remember that for an individual drug, the drug companies make profits for a few years, then the drug either becomes unpopular, or gets replaced by something else, or goes off patent and becomes generic. Drug companies are not looking forward to endless profits from these drugs. They know that they'll get some profit and then their time will have come.
If they could actually come out with a cure, it could actually be more profitable for them than just treating the virus chronically.
What question on your online forum is most asked in 2008? Is it about women who want to have a child with a negative partner? Is it about treatment-experienced people looking for a good regimen?
Right now the most important questions, and often the most asked questions, have to do with how we can best use these new drugs that have come out in the last year. We talked about 1996 being a really exciting time in HIV history, but actually 2007 and early 2008 are also very exciting years. We've had three new drugs in the last year, all of which are important drugs for people with drug resistance.
We now can, for the first time in the history of the epidemic, treat virtually everybody effectively and get them to an undetectable viral load.
A question I often get from both doctors and patients is: "How do I best use these new drugs to make sure that they work and that they last?" I get a lot of that from the HIV-positive users of the forum. Of course I still get my usual questions from the "worried well." Those don't change very much over the years.
Do you think that the current newly diagnosed people need to learn as much as patients did 10 years ago? Most positive people go to their doctor, get treatment, then go back to their daily life.
Actually, they need to know even more now. The reason for that is, because treatment is so effective, it's so important that it be done right. In the old days, we argued about, "Should AZT [Retrovir, zidovudine] be used when your T cells are below 200 or below 350 or below 500?" In the end, AZT had a very modest benefit and it didn't last that long. If you got that wrong, it wasn't going to make a huge difference.
But today, because the drugs are so effective, anything you do right is going to make a huge difference and if you do things wrong, you risk the issue of drug resistance and of using up really good options. I think the more effective a treatment is, the more important it is that it be done right and for patients to educate themselves before entering into that very important first step.
Fortunately, there's less that you have to know now about things like opportunistic infections and the symptoms of HIV because, hopefully, we treat people before those things happen. That's not as important, but the issues about treatment, adherence, how to put together a good combination and resistance -- those are more important than they ever were.
It's simpler for people with HIV now because they don't have to take as many pills and there are fewer side effects. However, in some ways you could argue that it's more complicated for the clinicians prescribing the medication because there are so many more choices than there used to be. How do you make those choices correctly?
I'm always glad to see people with HIV writing to me -- not that they don't trust their doctors, but they want to be equal partners with their doctors. They want to know what questions to ask. They want to know enough information to have an intelligent conversation with the clinician about their treatment. Educating yourself in that way can only help.
Have you also been surprised in your role as an online expert by the lack of knowledge a lot of health care providers demonstrate? We've had people say things such as, "My doctor's giving me Truvada [tenofovir/FTC] and Viread [tenofovir]."
Yes, I have seen that and that has not changed, it continues to be an issue. In some cases, it's just a matter of opinion, or difference in style. The doctor's not necessarily wrong but it's not something that I would do, or maybe they're using a drug that is still a legitimate drug but not designated as "preferred" [by the U.S. treatment guidelines; for a list of "preferred" regimens, click here] anymore -- that kind of thing.
In some cases, I actually have to be pretty blunt and say, "You need a new doctor." So far, I haven't been sued for saying that, but some mistakes are just too extreme to ignore. With the less extreme mistakes, I try to be a little more diplomatic and say, "You might want to consider another opinion." Or, "You might want to print this out and show it to your doctor and see what he has to say."
Do you think that this is happening because HIV is such a fast-changing field and it's very, very hard to keep up with the changes?
It is very hard. I wouldn't expect a primary care physician to keep up with all these changes, just like I wouldn't expect a primary care physician to know how to treat leukemia. Our goal should not be to get primary care doctors to know more about how to treat HIV, but to get primary care doctors to make sure that they're referring their HIV-positive patients to experts. Not to say that they have to give up their patients, but to co-manage them to make sure that there's an expert involved in the decision making. We don't have enough HIV experts in this country to do primary care and HIV therapy for everybody with HIV. It is important that people with HIV have the input of an expert, even if it's infrequent.
How do you define an expert?
That's an issue. How do you define it? There's currently no official specialty for HIV medicine, although the HIV Medical Association, which is a branch of Infectious Disease Society of America, is thinking about establishing a credential with a special test. There is also the American Academy of HIV Medicine that has had an expert certification process. [To search through their list of HIV specialists, click here.] There are arguments about whether this is the right way to go. But at least it's a start to try to establish what kind of knowledge base doctors should have to be qualified as HIV experts. At least it selects out those clinicians who really want to be devoting themselves to HIV enough to take these tests or to apply for their certification. It doesn't mean that somebody who is on the list is necessarily an expert, but it's a step.
Have you done a book tour or been on T.V. as a result of the book?
No, no movie contracts, nothing like that. No Oprah, yet. I'm just waiting by my phone.
Do you think people aren't picking up your book so readily because HIV is still not being focused on in mainstream U.S. society? A book about diabetes, or something where you wouldn't talk about sex, wouldn't be as interesting.
I think my book is much more interesting than diabetes because we talk about sex. I mean, they already have one chapter about sex in a diabetes book. We've got all sorts of chapters about it in this book. I think it would provide hours of entertainment for somebody who didn't have HIV, but I'm biased about that.
According to the publishers, although they haven't told me how much it's sold, they have told me that more of this book has sold than the other books in the series, for what that's worth. I'm pleased to hear that. My patients bring it in to get it autographed; I don't know if they've read it or not. I guess maybe they'll tell me once a year whether it's selling or not.
I've done some patient forums locally, in Baltimore, and the audience is financially disadvantaged, inner-city minorities. Even though the book is $13 to $15 on Amazon, it's way more than they can afford to spend. I wish we had a way of distributing the book, because so many people in this country who have HIV don't have good access to the Internet and don't have the money to spend on books like this, even cheap ones. They get short-changed when it comes to information.
If somebody out there knows somebody who is willing to provide a grant to distribute this great book, so that people can become more knowledgeable about HIV and really be able to take care of themselves, that would be great.
That would be great.
Do you think you're going to do a second book?
I think, at least for this book, my hope is that we can continue to update it. Obviously, when you write about something like HIV, the information can become obsolete pretty fast. My hope is that it will sell enough to be able to justify having it updated frequently. Still, someday, my hope is to be able to write a book with some of those crazy questions from the forum, just because some of them are so priceless and I'd hate to see them disappear into the Ethernet. So far there is no big demand for that.
Can you remember any, so we can close with a funny question? Do you remember any good ones?
Somebody had written to me that he had very soft skin. He was worried that that must be a sign of HIV. I wrote back a very lengthy discussion [on the Hopkins site] of how the history of soft skin is a symptom of HIV and I cited articles that I made up out of my head -- how the tragedy of soft skin started out in San Francisco. I wrote this long thing and I thought it was pretty clear that I was joking.
Apparently this person didn't think so. He was terrified that I had confirmed that he had HIV and then wrote to people at The Body. They wrote to me saying, "What is this that you're saying that people with soft skin have HIV?" It really snowballed. But anybody normal who read my answer would know that I was joking. It's still there in the "Favorites" of our Web site.
[Laughs] Thank you so much, Dr. Gallant. I'm sure that people will be going to Amazon.
Yes. Just type "Joel Gallant." It's easier than typing "100 Questions and Answers About HIV and AIDS."
It's a great work and I think it's really needed. I hope it gets well distributed.
Thanks so much, Bonnie.
This transcript has been lightly edited for clarity.