Nelson From Houston: Activist Since 1986Nelson Vergel
Hi, Bonnie. Thanks for having me.
Can you tell our readers and listeners about your personal history with HIV? How did you find out that you were HIV positive?
I’m originally from Venezuela, from South America. I came to the U.S. in 1984. I moved here because of my boyfriend back then, and as you know, back then it was a scary thing to have HIV. Even to get tested back then was a horrible thing, because there were no treatments and no options and there was a lot of fear. But he tested behind my back and told me he was positive. That was 1986. So I decided I needed to get tested myself, and I did. I got tested in 1986 and found out I was positive. It’s been what? Twenty-one years, since I tested?
About Nelson Vergel
Home: Houston, Texas
An HIV/AIDS activist since his diagnosis more than 20 years ago, Nelson Vergel is also an advocate for regular exerciseand goodnutrition. After all these years, Nelson remains dedicated to helping people with HIV. He runs a few Web sites and discussion groups. He also has a full schedule of talks around the country. Originally from Venezuela, he has been living in Houston, Texas, almost as long as he’s known he’s HIV positive. Among Nelson Vergel’s top tips for surviving HIV/AIDS: Stay informed and connect with others.
Was he living with HIV at least for the two years that you were together.
Once he found out he told me.
He told you immediately afterwards?
Yes. Yes. So I was not looking forward to getting tested because … there were many reasons back then. For instance, there was discrimination in the job place. Companies were testing people back then without your consent, and there were no treatments available, no hope. I was an immigrant, who was coming to the United States and trying to make it. It was not a piece of knowledge that really helped anybody back then.
When you say the information did not help anybody. Was this because back then there was no treatment?
Yes. No treatment: no AZT [Retrovir], no HIV drugs, a lot of fear and a lot of discrimination. So I was really not looking forward to a test. I don’t think I would have tested or gotten a test done if it weren’t for him. It would have taken me probably ten years to do so.
So, anyway, I guess he saved my life, really.
Why do you say that?
Because it would have taken me a long time to make the decision on my own. I just got tested because I knew that we had had unsafe sex, and chances were that I was positive.
But in those years, was there a strong notion that that was unsafe sex?
No. When I met him in ’83, in ’82-’83, HIV wasn’t even part of the global discussion. They found out about the gay cancer in ’81, ’82; and that’s when I met my partner. Nobody was using condoms back then. I think the only thing we were worried about back then were herpes and STDs [sexually transmitted diseases]. So we were having a pretty free life when it came to sex in the gay community.
Where were you living at the time?
I was working in Venezuela. Moved to Houston to try to make a living here, as an immigrant without a working visa, or anything. So it was a big adventure.
What kind of jobs were you doing?
I’m a chemical engineer per training, and had been working the oilfields in Venezuela. Of course, Houston, Texas is the best city to come to, if you’re a chemical engineer. But I was looking for an engineering job while the oil business was crashing in Houston. So it was a hard time. Then of course I find out that I’m HIV positive. So I said, well, I guess I came to the United States to die, not to accomplish the American dream.
So that was horrible. It probably was the darkest time in my life. I decided, after crying for two days that either I would accept my early death, or do something about it. So I saw an ad for a training class to become a CDC — Centers for Disease Control — certified HIV counselor, which was basically a volunteer position, to give people their test results, if they were positive or negative. So I decided to take that class. It was a three-week class. That’s how I started being an activist.
Basically, a week or two weeks later, after getting my test, I started my training as an activist, without knowing I was going to become one.
What happened with your relationship with your boyfriend?
That eventually ended, years later. He eventually died of AIDS and wasting. He died in ’92. We both decided to go into the first AZT study.
With the ACTG, the AIDS Clinical Trials Group network?
Yes, it was an ACTG study — but back then I don’t even think it was called ACTG — but it was studying AZT, the first drug, at high doses. We were taking it four times a day, 1,000 mg a day. I found out a year later that I was actually in the placebo group … which probably saved my life, too. Because we found out later that AZT, at high doses, was actually killing people faster than not. He was on the treatment arm — the actual, real treatment — and I was on placebo. I really think, looking back, that’s probably what made a difference between both of our survivals — that and many other factors, of course, that I’ll probably talk about through the interview.
Whom did you tell, after you tested positive? Did you tell your parents?
No, not at all. It took me easily eight years. My parents and my family were all back in South America.
Did they know you were gay?
My mom, yes. Before I left, she found out that I was gay. That was one of the reasons I left the country because back then it was difficult being gay in Venezuela. There’s the machismo, and the cultural problems with growing up Catholic and Latino in South America. Venezuela is not a very open-minded country when it comes to homosexuality. That was one of the reasons I left.
But, yes. They knew, but it was something that nobody discussed. But everybody kind of knew that I was gay. Of course, they found out a lot a few years later that I’m also HIV-positive. But, no. It took me a few years. I also eventually found a job at Shell Oil, working as an engineer for them. I was also in the closet, in a double closet, not only about being gay, but also about being HIV positive.
But did you have health insurance with Shell Oil?
Yes. I had health insurance. I was always wondering if they knew about my status, since, of course, they were getting the bills. So that was always a question in my mind — that somebody knew in the company. Obviously, I didn’t really know who, besides maybe the people who worked in Human Resources. That was also stressful for me, hiding my identity as a gay man, and also as an HIV-positive person. I was also becoming, as I said, an activist. I was working during the day and counseling people at night, in a free clinic here in Houston, the Montrose Clinic. So I had a double life.
You were counseling newly infected people?
Yes. I was counseling people that got their HIV-negative results, or HIV-positive results. But back then, I remember clearly: I would say 50 percent of the people I would see were positive — I would probably see 30 people at night; there was a lot of people back then, and a lot of anxiety. I would see easily 20 people that were HIV positive, sometimes in one night. It was really, really hectic. It would help, because I was already positive myself and dealing with it. I could tell them, “Listen, I’m positive, too. And yeah this is a scary thing, but we’ll find a way to work through this.” Of course back then we only had — in the late ’80s, early ’90s — we only had AZT, and then we had all the other nucleoside analogs, like ddC [Hivid] and ddI [Videx], and d4T [Zerit]. They were drugs that were not really helping us survive, but they had some minor effect. I concentrated on nutrition and exercise and vitamins and meditation, anything that could help me live longer. There were not many things that you could do.
So what made you so hopeful and so able to deal with a life-threatening illness? Do you think it helped that you were counseling others?
I’m very competitive. I was raised very competitive. I was raised by a mother who thought that challenges are just learning experiences. That they shouldn’t be seen as something bad. As a result, I think, I took living with HIV as a challenge, and also decided to learn as much as I could. That course that I took, that training with the CDC, opened my eyes to the fact that I could become an expert in my own illness, even in 1986, ’87, when there was nothing, no treatments. I realized that becoming an expert on my own illness was probably going to save me. That, and I think, many factors. I also had a fear — I still do, after 24 years of infection, I’m terrified about being in a hospital bed, depending on people. That drives me to be really obsessive about information and keeping myself healthy. I want to be in control all the time. So I’m actually a control freak. So I have that, too.
I was raised by a mother who told me that vitamins were good for you, that pills are not bad for you, that exercise was good. She would get up every morning and walk, and run around, jog. I was raised with a mindset that pills are not bad; exercise is actually good for you; eating well; having some space; and seeing something as a challenge, not as something that is going to destroy you. I just think that I wanted to prove that I came to the United States for the right reasons, and I wanted to follow the American dream. I didn’t want to die here. So I guess that was another way of hoping. I really don’t know. I’m not that special. I’m probably just lucky to be alive this long.
But you were counseling people, in a pretty hopeless moment, to be hopeful.
Yes. Even back then. Yes.
So that’s a pretty amazing thing to do.
Yes. I think what really helped me is to get out of my head. I was so terrified. I was only 25, 26, back then. I was terrified to die young, and die in this country by myself, where I had no family. My relationship was breaking apart. He went inwards, and I went outwards. Meaning, when he found out he was HIV positive, he didn’t tell anybody, not even his best friends. He didn’t want anybody to know. He didn’t want to take any classes. He didn’t want to learn, read. He wanted to completely ignore that.
In my case, I went outwards. Meaning, I wanted information. I wanted to find out more. So that, in itself, helped break us up even more. The way people cope, as a couple, is sometimes so different that they break up. I think it’s just a personality trait. It takes a certain personality to not be overwhelmed with information, but to actually thrive with a lot of information.
What kind of nutrition and exercise stuff were you recommending to people back then?
I don’t recommend. You know, I’m not a doctor.
What was helping you? What kinds of things were helping you feel better?
I started reading a lot of bodybuilding magazines because my first fear — I mean, for those of us that got tested before 1996, we had two huge fears. The first one was wasting syndrome. We didn’t want to end up all bones, because that was the first way for people to know that you have AIDS. Wasting syndrome was number one in our — when you were told you were HIV positive (at least I did) — the first thing that came to my mind is, oh, my God. I’m going to end up all bones, in a wheelchair, with KS [Kaposi’s sarcoma] lesions on my face. That’s the first thing that I thought of.
I don’t want to ever end up that way. So I became obsessed with preventing wasting syndrome. Most of my friends were already sick and getting sicker. Every weekend for years we had memorial services. So death was around most of us back then. It was almost like being in a war, and having planes flying on top of you, bombarding the city, and you didn’t know when the next bomb was going to fall on you. I know it sounds dramatic, but that’s how I felt.
So you were looking for a shield to protect yourself from the next bomb. That’s how I felt. So I started reading a lot of magazines on bodybuilding and nutrition, and became very obsessed. I’m an engineer, so I guess you can say I love science and information, and stuff. I started learning that a lot of people were putting on lean body mass, and they looked like the opposite of [how] a wasting patient was looking back then. I concentrated on high protein, and working out with weights three times a week for an hour, and became very focused on that, especially when my ex-partner — we’re still friends — had already lost 60, 70 pounds, around me. I started looking into hormones, like testosterone, and anabolic steroids, which, back then, were — still now, pretty much — criticized by everybody. Plus I looked into vitamin supplementation. There was some research on deficiencies and HIV.
Then, in 1988, I started reading the work that Dr. Donald Kottler had done on wasting, and some other researchers started looking at testosterone deficiency. By the late ’80s we were having the notion that nutrition, hormone balance and exercise may help us live a little longer, or a lot longer, while we waited for drugs to come through and control the HIV virus. So that’s a long search. Eventually, I decided to do all the research — because I read and read, and went to libraries. Remember, we did not have the Internet back then, because that’s how old we are, some of us. A lot of this research had to be done; you had to go to a library. So I went to libraries every weekend and read on nutrition, and all that.
Eventually, I found another job with Shell, and they transferred me to Los Angeles. That’s where I met very progressive, I would say, patients like me that were really on top of it. They are all dead now, but I learned a lot from these guys through support groups. They told me, “Hey, Nelson, you know, hormones and nutrition and supplements. Look at us. We’re looking good, and we’re not wasting.” So I finished up with my research and ended up writing a book about it.
What support groups did you join? Which organizations?
The best one was Marianne Williamson’s support group. She’s now a very well-known author and motivational speaker. Marianne Williamson opened a group in West Hollywood. It was actually a food pantry, I forgot the name — Project Angel Food, or something. She would have support groups. A bunch of us, like, 40 of us, would come and sit on the floor. Marianne Williamson would sit on the floor with us and she kept repeating to us that we were not victims, that we could take charge, that even if we died young, we need to make the best out of our lives. It was all about shifting the mentality from being a victim to being empowered. I really think that woman really had a lot to do with my shift, with me deciding to take charge of my life. I love her, by the way; I’m very biased. People think she’s a spiritual guru, and sometimes people criticize her for many things.
Back then, we also had other support groups. Louise Hay: I didn’t really like her. She kept saying that you only got sick if you didn’t love yourself. We would have a whole stadium full of people with HIV, listening to this woman. I think she’s nuts. It’s not about loving yourself. Many people are loving themselves and they are still dying.
The Marianne Williamson support group was definitely the place where I met the coolest guys, with the most information.
It was very important back then to get out and look for information about HIV because there wasn’t a lot of information available.
Oh, no. There was no Internet. The only newsletter we would get by mail is John James’ AIDS Treatment News. I love John. He’s still alive. He’s not HIV positive, but he’s my — I even tell him now, “I used to get your newsletter and I’d wait for it.”
I would also get Project Inform’s newsletters by mail. That was the only way that we knew what was going on. People forget how far we’ve come.
Yes, or how difficult it was to get information from the AIDS conferences, from researchers.
Not only that: we couldn’t even get to the conferences. Only doctors and researchers, and very few media people were allowed in conferences back then. It was a different world, very different.
What was the first conference that you went to, research conference, for HIV? Do you remember?
Yes. The Berlin conference. I managed to get a scholarship, somehow. That’s when they told us that the CONCORD study had been finished, and the AZT data was out. We found out that AZT was actually killing us faster, in the high doses, of course, that were used back then, so that was a very depressing conference.
Then, of course, I went to the Vancouver conference, in 1996, when HAART was introduced, and we were talking about getting rid of the virus. You know, Dr. David Ho’s theory.
Eradication. Oh, my God, we’re going to be saved. Of course, after ’96, I have been to every single Retrovirus conference [also called the Conference on Retroviruses and Opportunistic Infections, this is the most important HIV research conference of the year].
I became extremely active after ’94. It’s a long story. But I applied for the community advisory board at the ACTG, the AIDS Clinical Trials Group. That, for me, was the most wonderful experience, because it’s like a school where you learn how to interact with researchers, and also learn how to interact with doctors and how to read research protocol, a study, and how to look at data. I volunteered for three years there, and it was like my school to give me the skills to do what I’m doing now.
What I didn’t ask you was, when you were first diagnosed, did they give you a CD4 count?
Oh, no, no. Not at all. CD4s … I forget when I first saw my CD4. I know it took at least two or three years. Back then, all you got was an HIV test. They told me to go home and pray and eat well, and take care of my business. Put my documents in order.
But I remember, deep inside I had this feeling that the more information I had, the more chance I would have to make it through. So, here I am, 48 years old and getting older with HIV. You know, 24 years later.
Does anyone have any idea how you survived when so many other people died?
No, Bonnie. I think we are finding out more and more that it’s a combination of factors. I think we haven’t really found out yet. I think we’re getting closer to starting to find out what we call polymorphisms — genetic factors that make somebody probably have a longer survival, better survival. But I think other factors were that I really prevented weight loss, unintentional weight loss and wasting. That bought me a few years; I’m sure of it. As did exercise, in combination with nutrition and testosterone, and all that. I think whoever survived till ’96, ’97 — of course, made it through to the wave of HAART, to the introduction of protease inhibitors. Those of us who did so were able to survive longer.
Many of my friends and my partners (I had two partners actually die) did not make it to ’96. So of course, those of us that did make it through ’96, ’97, were exposed to the new drugs. I really think I would have died before ’96 if I hadn’t taken care of my nutrition, exercise, hormones, and prevented unintentional weight loss. That would have killed me. I probably would have been dead by ’93. I’m sure of it. So I bought some time. But is that the reason why I’m alive? No, it’s a combination of factors. It was that, HAART, maybe the fact that I have faith — not faith like God faith, but I have faith that I could take care of my health and control my outcome. Maybe I do have some genetic factors that also gave me some advantage.
By the way, something I haven’t said in this interview is that I had never achieved undetectable viral load until a year and a half ago, for six months, only. So I had been living with a viral load of over 5,000 for 21 years. That in itself is really a miracle.
So what was your CD4 count when you first got tested, whenever that was?
Six hundred and twenty, around there.
Six hundred twenty?
Yes. So I was really healthy when I found out and, in a way, as I said, my partner back then probably saved my life. Because I found out early on.
You think you had been recently infected when you were diagnosed?
I was probably infected on March 13, 1983. I know the date because I was very symptomatic after that. I went through that viral syndrome, where I had a flu for two months, and my lymph nodes got inflamed everywhere. I had fevers and thrush. I had all the symptoms. Of course, back then, I didn’t know what it was. I thought it was a bad flu that I had caught in the United States. I came here for a conference and then went back home. I met my partner at the conference. I remember when I got it: 1983, for sure. I’m a hundred percent sure of that.
Right. Did you have symptoms after that? In the ten years after that? Because it takes an average person who gets infected 10 years to even have a symptom.
Oh, yes. Oh, diarrhea. My average weight back then was 168. I went down to 140 pounds, unintentionally. I had diarrhea. Lots of depression, of course. But, diarrhea was a big thing.
But you didn’t have any OIs?
No. I have never had an opportunistic infection [OI], no. Even now, 24 years into it, I have never had PCP or anything. I have been under 200 twice in my life.
Under 200 CD4 count?
Yes. Right now I’m at 325. I’m on the integrase inhibitor raltegravir and Truvada and Reyataz. So I’m actually in a study. I’m always on the latest thing because I’m trying to — you know, as I say, I’m a long-term survivor, and I have developed multidrug resistance. My virus has resistance to all protease inhibitors, all nucleoside analogs, all non-nukes, and now I have resistance, also, to integrase.
I guess for people who don’t really understand resistance, can you talk a little bit about how you became resistant? Was it because you didn’t take your medications on time?
I’m so glad you asked me that question, because I’m so tired of going to conferences, going to classes, going to seminars, where the doctors keep saying that people that have resistance, or their virus mutated, the drugs have stopped working on controlling their viruses; the main reason, and probably the only reason, is because they didn’t take their meds on time, or they didn’t really stick to their regimen, etc., etc.
That is probably true; it’s number one in the list of reasons. But for somebody like me, a long-term survivor, I have taken my meds on time every single time. I have probably forgotten here and there once a month to take it within the hour. So my adherence has been 100 percent. But people like me, that have been positive forever, were on monotherapy of nucleosides for easily … I forget … from ’89 till ’96, or ’94, around there — we were on monotherapy of nucleosides or dual therapy of nucleosides. We developed resistance, or our virus mutated, and became stronger and the nucleoside analogs stopped working there. Then we were exposed to protease inhibitors on top, combining them with nucleosides that we had resistance to. So we were on what we call virtual monotherapy.
There were no resistance tests back then, so you didn’t know?
No. Back then, no. When was the phenotype? The resistance test was ’92 till ’98, I think?
Very late 1990s.
Yes, ’97. So we kept making the same mistake: adding the new drug that was approved on top of drugs that were already failing us. I do want to repeat that. Drugs that were failing us. We’re always saying, “The patients failed the drugs.” No. Drugs are failing us. I feel very strongly about that. And, yes:
- Adherence is number one. It’s one of the number one or two reasons why people develop resistance.
- But number two is that we have a history of resistance because of monotherapy or virtual monotherapy.
- Three, some of us may or may not absorb drugs the same way.
- Four, blood levels, etc., etc., etc.
So I really want to make sure. It really frustrates me when I only hear doctors talking about adherence as the only reason to develop resistance, because it is not the only reason. Anyway … I’m sorry. I got a little … my activist. I have my own personal feelings about it because it really feels like we’re always blaming the patient. And it’s not a hundred percent true all the time that we are all to blame because we develop resistance; therefore, we are bad patients, you know?
So tell me about your being proactive, in terms of getting on clinical trials. So what makes you decide? When do you do this? You’re on a regimen?
I don’t want to be criticized for this, but I think joining a clinical trial can have a lot of benefits, obviously, but also a lot of disadvantages. In my case, I have probably joined easily maybe four or five studies to get access to a new drug because they are not approved, and they may take a while to get them approved. I have never joined a phase 2 study, which is an early study. I think there are too many risks involved with that. But I have joined phase 3’s, which are larger studies. We know a little bit more about the drugs.
I usually join a study for one reason only: to get access to a new drug. Because, yes, I’m looking for the next best thing. I have taken probably more risks than I should have. Of course, it’s easy to look back and say, I should have, I could have, I … whatever. But I have taken probably too many risks by doing so. Why? Because every, single study — until recently — has only allowed the use of one investigational drug at a time. Meaning, you’re adding one investigational research drug, and you add it to a failing regimen. So that, in itself, was not something that was … We didn’t know better back then. But it didn’t serve me. Actually, I built up more and more resistance as time went by.
So nowadays, the notion is, you need two active agents in any regimen.
Three. I mean, three is ideal, but you have to have at least two active drugs.
Yes. At least two agents, two medicines that your virus has never been exposed to, and has not developed a resistance to. What we also call drugs that your virus has sensitivity to. Thank God, now, at least we have the genotype and phenotype tests that are able to tell doctors in a better way whether or not a drug has a good chance to work on you or not. Now we also have several drugs, new drugs coming through, more or less very close to each other. So we are able to combine new drugs together, for the first time in probably 10 years. I really think we’re going through the second wave of HAART right now, really, right now.
So it’s a very exciting period now.
Yes. Very exciting. Especially for people like me that have developed resistance to nucleosides [NRTIS] and non-nukes [NNRTIs]. And even protease inhibitors: we have Prezista and Aptivus, two second-generation protease inhibitors. We are going to have second-generation non-nucleosides. Of course, the new integrase inhibitor class is coming through right now and seems to be very good.
Are you taking that?
Yes. I’m taking the Merck raltegravir. We used to call it MK-518. It’s an integrase inhibitor, which is taken twice a day, without Norvir. I’m also taking Reyataz, which is a protease inhibitor that I’ve got resistance already to. But it’s a long story. I’m just taking it because it helps with the integrase inhibitor a little bit. I’m also taking Truvada, which is two drugs combined: it’s Viread andEmtriva. I also have resistance to those. But drugs that you have resistance to can also help you out, they can help stabilize your health. That’s all I want to say right now, without getting into details about viral fitness and all that. People ask me, “Why are you taking drugs that you have resistance to?” There are so many things to that, and that’s another topic we can talk about.
Are you taking other medications besides HIV medications?
Oh, yes. I’m a walking pharmacy.
Are you doing this because your physician tells you to do it? Or are you doing it because you tell yourself to do it?
I only take medications that my physician tells me to take. Of course, I do my own research and ask him. I have a very good doctor. I’m taking Famvir [famciclovir], which is a drug to treat herpesand shingles, and things like that. There’s some good research that is starting to show that people, especially — I had shingles in the past — that had many flare-ups of herpes-related infections may benefit from continuous dosing of Famvir. I am also taking a testosterone replacement, every two weeks. It’s an injection.
How come you’re taking the testosterone?
I’ve been doing it for 14 years because my body does not produce normal levels of testosterone. Testosterone can prevent HIV wasting or related weight loss. It can also prevent depression,fatigue, sexual dysfunction. It’s a very important to have normal levels in your blood.
Did your physician to tell you to get your levels checked?
Oh, no. Not at all [laughs]. You know, I research. I find out about things, and then I talk to my physician about it. That’s what being proactive is. A proactive, empowered patient is a patient that reads, that gets newsletters, like from The Body. I’m not plugging you, but you do have a great Web site. A proactive patient finds out things that they probably haven’t heard of before. A proactive patient does research and prints it out or e-mails it to their doctors and discuss it with their doctors.
So back then, in 1993 … oh, no. Testosterone was not even part of the conversation back then. I found out: hey, this is a problem that 40 percent of us may have. So I talked to my doctors. “Oh, sure, let me test you.” My results came up low. I started getting treatment because of that. But, no. There are many treatments that are not part of what we call the standard of care. Remember only the squeaky wheel gets the grease on. Meaning, if you don’t ask for it, you won’t get the test.
So I tell people the more you know about your health, the more able you are to ask you doctor for the right test. People say, “Well, why should I do that? My doctor should know everything! My doctor should know what to test me for.” Well, doctors are human beings, they are busy. If you don’t complain about symptoms, why would they spend the money or the time to test you for something?
Does your doctor treat you like a partner, in terms of making decisions?
Yes. My doctor really treats me like a partner. Of course, I’m a difficult patient because I’m always asking him stuff, bringing him stuff that he probably hasn’t seen because I’m always reading. But he is not threatened by my knowledge. He embraces it. His name is Dr. Shannon Schrader: He’s one of the best here in Houston — probably one of the best in the South, I’m sure. Yes. He’s a partner of my health. He makes decisions. He doesn’t make my decisions, my health decisions; I do. He facilitates them. Of course, you need somebody to prescribe, also. You always need to make sure that your doctor is your partner in health, not somebody that tells you what to do.
How did you choose your doctor? I know everyone has difficulty finding someone who they can partner with.
That’s a good question. People talk. I tell people: Go to support groups. When you go to a support group, if there are five people there, people talk. You just ask, or start talking to them, and people start saying, “Well, you know, I went to this doctor. He’s got really bad manners.” Or, “He treats me like I’m inferior.” Or, “I can sense that he’s got homophobia, or HIV phobia.” Blah, blah, blah. We all talk. Or they say, “He’s sweet and wonderful. This doctor’s great. But he doesn’t know much about HIV. But he’s so nice.” So it’s a conversation. Support groups are a good source, calling AIDS service organizations sometimes, although they can’t really recommend doctors.
But I would say: online. Internet support groups online, discussion groups. I have a huge one, almost 3,000 people.
What’s the name of your online support group?
My discussion group is PozHealth@yahoogroups.com. Go to Yahoogroups.com, and search for PozHealth, P-O-Z Health, and you join.
Anyone who is positive can join?
Anybody that’s positive. Anybody that is not positive. Anybody that cares to read … anybody. I’m the moderator and founder, and there are almost 3,000 people on the list now. It’s four years old. Anybody can join. Even spammers, of course, but I moderate. Meaning, I delete e-mails before they’re posted if I don’t think they are the right e-mails for the group, or if they’re from spammers, or if they’re from people trying to sell something. I keep the groups really clean. Nobody attacks anybody. I’m very proud of it. It’s probably the largest Internet group out there, besides, of course, groups supported by Web sites like yours, where you have a lot of people asking experts. TheBody.com has probably the most experts in the Internet, where people can actually ask questions of doctors and experts, on every single topic.
I tell people that whoever has a computer has an amazing, amazing amount of information available to them. The key is to pick the right sources, because there is so much out there, you can get overwhelmed easily. TheBody.com, PozHealth@yahoogroups … there are many other, of course, Web sites and newsletters out there that you can get weekly, or biweekly news.
The first thing that people tell me is, “Nelson, I am really overwhelmed. There is too much information out there. Can I find a place where the information is either digested or summarized?” Especially the newly diagnosed. The newly diagnosed have a lot of problems with too much information. That’s why there are people like us, I guess, doing the job.
Living with HIV all these years, don’t you get sick of talking and thinking about HIV? How do you have the stamina to still be on this subject?
That’s a good question. I think I need to get a life. You know, I do.
I’m not trying to dissuade you.
No, I do. I really do. I breathe, eat, sleep … everything is HIV. Why? I don’t know. By the way, I’m on disability. I’m on permanent disability. I’m not an engineer anymore. I’ve been working from home, basically, and lecturing and traveling since 1994. So all I have been doing, really, is all about HIV.
You asked me how I actually keep myself going and working in the field? My own interest. I think … this is going to sound corny, but you know, my viral load is 6,000 right now. I don’t have the security — well nobody does — of having undetectable viral load and a very stable health outcome, or outlook. So that certainly drives me to know more.
My mom raised me to be a hero. She always said I could save the world. So I still believe what she said. I like helping people. I also like getting feedback. But, helping people. I have an ego. I love speaking, as you can tell. I just think it’s great to travel and help. I don’t know. I think I was born to do this. I don’t believe that there is such a thing of destiny, or … oh, I got HIV because of a reason. I really don’t believe that. But, hey, I have channeled my anxiety over being HIV positive in a good way, I think. And maybe I have found my life’s purpose. I even wonder what would happen if I was cured tomorrow of HIV. What would happen? Because I would not have HIV to work on.
I always say I’m going to stop next year. I’m going to go and find a real job, and do something different. But, no. As long as people need help and we don’t have a cure, then we all have a job to do.
I know you talk about HIV across the country. What is a typical lecture like? What do you talk about? Why do people come and hear you?
I talk about lots of things. It depends on what’s hot. I talked from 1993 to ’96, ’97, ’98, about wasting syndrome. That was my main topic. I became, like, the wasting syndrome guy. Thenlipodystrophy started showing up in ’97. So I talked about lipodystrophy from ’97 to ’99. Then lipoatrophy became more evident — you know, fat loss under the skin — compared to what we called Crix [Crixivan] belly. So I talked a lot about lipoatrophy.
In ’99 all side effects started hitting us hard, all of them, all kinds of side effects. So I started talking about side-effect management, how to take care of your health and your side effects, also I talked about adherence.
Of course, Spanish is my main language, and so I had this English with a thick Spanish accent. But I do lectures in Spanish on general treatment and information, adherence and cultural issues, resistance, salvage therapies, treatments for people like me, nutrition, exercise, wellness, side-effect management. Anything. I mean, anything you can throw at me, I love. If I don’t know it, I’ll find out.
Right now, my latest topics are, of course, the new drugs, salvage therapy. I know you hate the world “salvage,” so let’s call it rescue therapy. How to combine new medications, the new integrase inhibitors like maraviroc, and all that stuff.
So it depends. Sometimes, people call me and say, “Nelson, I want you to talk about issues for Latinos, or men’s health.” I have a lot of different formats.
Who invites you? What kinds of venues are you speaking in?
Usually nonprofit, HIV/AIDS nonprofit organizations. They’ll e-mail or call me and find out about me, and then I have to find some way to pay my way there. That’s where you have to ask for grants from pharmaceutical companies. That’s when I have to be really careful on how I do my job, because I can only work with unrestricted grants from pharmaceutical companies, so that they do not control what I say. It’s a tricky job. Treatment education is a very difficult job in the United States, because there is no money from the federal government to fund seminars and lectures to educate patients. So we need the money from pharmaceutical companies. Yet, we have to be very careful on how we inform patients without any biases. That’s hard to do. I have to keep aware of that daily, basically.
What do you think are the biggest ongoing problems that need fixing in HIV in the U.S. today?
We need a cure. We need more research on vaccines and immune therapies; that’s for sure. Number one. Definitely, number one. We don’t know all we need to know about immune response and all that stuff, and vaccine research is basically — not in its infancy, but we have a long way to go.
Access is still a problem. There are waiting lists in two or three states, although that’s gotten a lot better. But the access to treatment to those that have no insurance, no way to pay for these drugs. I mean, the average cost per year for first-line therapy, meaning therapy for people who are just starting therapy, is around $12,000. For people like me, the bill goes up to around $40,000 a year. Over 60 to 70 percent of us living in the United States with HIV don’t have insurance, or Medicare or Medicaid. So access is a huge problem in the U.S.
Another issue is education. More than 25 percent or 30 percent of people that are infected do not know they have HIV. And they are infecting others. They are not, of course, taking care of their health. So, educating people about testing, getting tested, and what you can do and all that — we still have a long way to go, especially with African Americans and Latinos and minority groups. We still have a long way to go with that.
We also need to fight the perception that we already have a cure, that AIDS is not a big deal anymore. That’s a huge problem, especially in young kids. I get e-mails every day, and sometimes people find my number, somehow and they call me. I’m getting a lot of e-mails from young kids, in their early 20s, that are getting infected, especially with the use of crystal meth. Especially crystal meth; I’m very concerned about crystal meth use in the gay community.
So we have a lot of challenges, especially with an administration that doesn’t seem to get that safe sex education is important, and not talking just about abstinence. Of course, we’re in paradise in the United States, compared to Africa or developing countries, too. So everything is relative. What’s a challenge for us may be a blessing for them.
I’m also very concerned because activism is — I’m not saying it’s dead, otherwise I would not be working on it — but we don’t have the degree of urgency. We used to hear about ACT UP, and all the things. It’s almost like people were afraid of ACT UP, and yet ACT UP did so much for all of us. I’m probably alive because of ACT UP, too. But we don’t have an ACT UP anymore; we don’t have that kind of sense of urgency, to really raise hell when we need to.
But do you think there’s a lack of people? There’s a lack of people who are living with HIV who want to be known as living with HIV and go out and protest? Do you think that’s a problem?
Well, yes, of course. There are many people who don’t want to disclose. I understand why, too; there are many factors. But, no. It’s really the lack of urgency. The lack of the sense that if we don’t do something about it now, we’re going to die. That’s been removed. Even people like me. I’m not in completely quote-unquote control: my viral load is still over the detectable level. Yet, I think we are all falling asleep. I think there’s a sense, a little bit, of hopelessness, in a way. In many of us, we feel almost like there’s not much we can do to change things. I don’t know whether that’s a communal thing that we’re going through in this country right now.
But, yes. There are many factors. I’m not saying, hey, everybody should be working their asses off in HIV. No. We don’t have a sense of urgency that we used to. But yet there are many unresolved issues that we need a lot of work on. I’d say most of us are working as volunteers. Most people are going back to work, too, and worrying about paying their bills and doing their jobs, and having their families. There are many factors. I don’t think it’s everybody’s fault. It’s just where we are.
I have just a little bit of time left. I wanted to ask a little bit about how you manage to find a partner, living with HIV.
That’s hard. Yes, that’s actually hard. That’s the first question people ask me when they find out they are positive. Because of course, the dating scene becomes a lot more complicated. For gay men, it’s bad. But for straight people, it’s even worse. Because of many issues: not only disclosure, but the fact of shared numbers, the numbers out there. So you are asking me personally? Well, I think it’s in a way easier right now. Because most people are meeting online. And you can disclose before you meet somebody. That makes it easier. You don’t get emotionally involved with somebody before telling them. So it’s easier to disclose before you even have the first date, online. Face-to-face is always harder, for some reason.
It’s very hard to date somebody who is not HIV positive, if you’re positive. Very hard. I hear it all over the place not only because of the fear of infecting them but also the emotional side of HIV. Sometimes we talk about our side effects and we talk about how bad we’re feeling, or fears of death, or whatever it is. We need a partner that can empathize with that, and actually know what we’re talking about by going through what we’re going through. So it’s very hard. It’s very hard.
I think that the newly infected ask me what’s the hardest part of just finding out you’re HIV positive now. I say, well, you know, besides just taking medications — and some people don’t have to — but it is really the dating, the dating scene. If you’re single, disclosing is a hard thing to do for many of us because we’re afraid of rejection. Once we disclose, if we’re lucky to find somebody who is HIV positive, too, or even HIV negative but what we call “HIV friendly,” there are other issues there, too, about safe sex and risk of infection, etc., etc.
Somebody should write a book about that. Not me, but certainly, somebody should. As I said, I met my partner online and that helped out a lot. It’s a lot easier to disclose than when you meet somebody face-to-face … for me. I hear from other people that they feel the same way.
How long have you been together?
We have been together 11 years. I’m a lucky man. It hasn’t been easy all through. Whoever thinks that having a relationship is easy is mistaken. You need to work at it. You need to stay awake every week, and make sure that you’re fulfilling your needs, and somebody else’s.
The hardest part is when we become unconscious, and we take things for granted. I have a couple of times. But I can say, 11 years in, it’s been a good ride and I’m here to stay. So I’m a lucky man.
I guess, finally, I just wanted to know what your health regimen is. Do you meditate? Do you take vitamins? Do you juice? What are things that you do every day, that aren’t medications, to keep healthy?
I work out four times a week, for an hour. I try to eat as balanced as I can. Nuts and protein sources, meats. I’m a meat eater. Vegetables, fruits. I do take probably more vitamins than your average HIV positive person, and I have my reasons. But I only take vitamins and supplements that have some data behind them. One other day, we can talk about this.
I have tried meditation, and I cannot do it, for some reason. My mind just goes all over the place. I have tried yoga. I couldn’t stick to it, either. I’m really trying hard to find other ways to find balance. Exercise is the only way right now for me. As I said, being active and helping people. I spend too much time online — maybe two or three hours a day — moderating my Internet groups and my Web sites, and helping people there. At the same time, I love doing that. I think that also helps my health, I really do — to get you out of your head.
I really believe in counseling. I honestly feel that my biggest CD4 cell losses in my life have been when I have been really depressed, or going through a breakup, or something really traumatic like that. I lose CD4 cells. So I really believe in the power of getting counseling, getting therapy. There are many places where you can get free therapy and free counseling in this country, especially for HIV. Call your AIDS service organization. So that’s important. People don’t even talk enough about that. Preventing and treating depression. Because depression is the number one reason why people don’t take their meds and their CD4’s go down. I have seen it in my life. Every time I lose T cells dramatically it’s because I’m going through a mental … you know, I’m feeling depressed or in high anxiety. So I do believe in that.
I’m not religious. I’m a little spiritual, but … that’s it. I don’t have much more than that. It helps to have a support group, having people to talk to — good friends, family, a partner. It helps to have a partner. There are studies that show that people with good relationships tend to live longer, too.
Now there are virtual support groups. So even people who are afraid to go to a regular support group, where they’re seeing people face to face can join a virtual support group.
Yes, you can stay home in your underwear and type questions, or even chat with people that are HIV positive and nobody has to see your face, or see if you look a certain way. So, yes. I think, once again, the Internet … but the Internet can also isolate us. So I tell people to be very careful. Because we are more connected, and yet many of us are becoming more isolated, too. Because we’re not getting out there, meeting people; we’re actually doing stuff online. So you have to be careful about that, too.
Well, Nelson, I could talk to you forever. I could talk to you for hours and hours. But I think people only want to listen to this for one hour. So I have to bring this interview to a close. So, thank you so much. It’s been a pleasure. I’m sure we’ll talk to you again about a lot of other subjects.