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First Person: José Sousa

First Person: José Sousa

January 2006

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Please tell us about yourself.

My name is José Sousa. I've been HIV positive since 1985. I work as a waiter, but since '89 I've been involved in HIV treatment information, basically following drugs as they come along. I started therapy in about '94 or '95 [as part of] a placebo-controlled study of Crixivan [indinavir] with AZT [zidovudine, Retrovir], 3TC [lamivudine, Epivir]. Once I found out I was not on the Crixivan, I dropped the study. I've been on and off therapy for most of my 21 years [of being] infected. When I developed the lipoatrophy, I was actually on d4T [stavudine, Zerit] for, probably, a year and a half, two years.

When was that?

I would say about 2000 [is when] I got lipoatrophy, which [affected] mainly [my] face, [though] not very deeply, legs, arms, and the worst was the ass. Basically it was painful to sit, because I take the subway home after work, and it would be very hard to sit on the hard surface. [I also developed a protruding belly.]

Jose Sousa 

About José Sousa

Can you describe when you first began noticing the lipoatrophy?

I first noticed it looking in the mirror, by people commenting on how my belly was getting bigger and by sitting down on hard surfaces. It was not really too traumatic for me, because I knew I could stop the drugs, and I knew if I stopped it quickly enough that it would reverse itself. I'm not one of those who just keeps on taking the drugs because [my] lab looks good, so I just stopped taking the drugs for awhile. But I always went on and off drugs anyway.

What do you mean?

Well, I do structured treatment interruptions on a regular basis.

Why is that?

Long-term toxicity of drugs.

How does that work for you?

It works great.

You're able to avoid developing resistance?

Oh, yes. If you do it right, you avoid developing resistance.

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Doing it right entails?

Doing it right entails knowing the half-life of the drugs and not stopping all the drugs at the same time. If you're on a drug that has a long half-life, well then you stop that one before -- like the standard now is Sustiva [efavirenz, Stocrin]. You stop it one week before your other drugs, and the nevirapine [Viramune] three days before the other drugs, but my trick is always to use Kaletra [lopinavir/ritonavir], because it's got a high genetic barrier. So if you stop Kaletra, it's not really dangerous. I have some mutations: I have mutations to AZT, but that's from when I was on the study on dual therapy, and I have the [resistance mutation at codon] 181 for NNRTIs [non-nucleoside reverse transcriptase inhibitors]. Actually, I was on a four-drug combo, and I just had a spike, even though I was very adherent. So stopping drugs is not the danger people put it out to be, if you do it right.

That's very interesting. It's a little off-topic, but it's of real concern to people, and I think the question of how people can be on lifelong therapy while minimizing the toxicity and side effects is huge.

Well, this is also when, even if I was more than six months on a drug regimen, I would switch drug regimens [while] staying always undetectable, because different drugs have different toxicities. But I actually like the d4T, because it is a very powerful drug. It's very hard to develop resistance to it, but when it came to the lipoatrophy, I wasn't able to accept that.

Would you say your lipoatrophy was severe?

No, I would say I was a one and a half [on a grading scale of one to four].

Where did the lipoatrophy hit you the hardest?

In my face. My ass was pretty bad. I was basically sitting on my bones.

Over what period of time did you lose the fat?

Well, once it started happening to me, it happened really quickly. I would say within six months there was a very noticeable difference, but it depends on [the person]. Some studies have shown that some people have a genetic predisposition to lipoatrophy. Well, one study, I think, only.

You're Latino?

Yes. Portuguese.

Do you think that had anything to do with it?

No, I don't think that has anything to do with it. It depends on genetic makeup. There was one study that showed that people who had lipoatrophy, 60 percent of them had this specific gene.

Everything [comes] down to genetics. Whether you develop, whatever you develop, I believe that you're just more susceptible because of your genetics, including getting infected with HIV. If you have the CCR5-Delta 32 deletion, then your chances of developing HIV are very unlikely, so everything is down to genetics.

What percentage of people have that?

Very few.

At what point did you stop the d4T? Was it as soon as you noticed the lipoatrophy, or was it after the six months?

About six months after I noticed it. I was going for an STI [structured treatment interruption] anyway, so I decided to wait as long as I could tolerate it, and then I stopped it. Within six months to a year, it was back to normal.

Really?

Yes.

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