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Charles Karel Bouley

Charles Karel Bouley

Posted: November 29, 2010 09:51 AM

AIDS drug Truvada shows promise as prevention for HIV transmission in gay men, according to reports out November 23, 2010

I have some experience with AIDS. No, I don't have it, I'm still HIV negative after over 50 HIV tests (I'm tested two times per year for oh ... 20-plus years now, even when monogamous in a relationship ... why don't you?). I lost my first friend to the gay cancer, GRID, in the early 1980s and began covering the plague as a journalist at that same time.

In the late 1980s I would marry/partner with an HIV positive man, who over time developed full-blown AIDS (his t-cells dropped below 200, the criteria then) and only had AZT to take. I watched that drug takes its toll on so many that most refused to take it at some point.

Then 3TC came around, and there were two drugs, two types. Then Combivir and then and then and then. My husband, Andrew Howard, would go on to grace the cover of the Wall Street Journal and we both were in Der Spiegel and featured on CNN and every major news network. Why? Because our friends were still dying. Because Andrew thought that he was going to follow the course of our good friend Lorenzo Braxton whom we had just buried. Because I was desperate and heard of a drug study at Stanford for a new type of drugs called Protease Inhibitors. I called the University administrator in charge of the program every day until they agreed to see his medical records.

When they set up an initial appointment after weeks of hounding, of calls, of letters, we flew up. In the intake they said he might be able to join the study, on open label, meaning we wouldn't know if he was getting the drug. He was crushed. Unless, of course, he's on mycobutin as a prophylaxis for an infection called MAI. I remember running to the Stanford lobby (pre-cellphone) and calling his doctor, who then called in a prescription to his pharmacy for the drug all while the nurse at Stanford called to confirm he was on it. If he was on it, they had to tell him he was on the experimental drug because it interacted. She called, the prescription made it in in time and he got on the study. A dirty trick? We were desperate, as everyone was.

We flew up twice a month. We got a watch with an alarm and set five alarms a day for the pill regime. And over time, it worked. His T-cells rose, his viral level decreased, he regained his health and went off social security disability to become my on-air partner, making history at KFI Radio Los Angeles with me as the first openly gay male couple to host a drive time show in a major market.

The drug was Crixivan, by Merck, and it, and other protease inhibitors changed the game and have kept so many of my friends alive. If Lorenzo had only lived a few more months, or Michael Mungarro, or John Delicce, or my beloved Gary Alexander, or (unfortunately, most of you can fill in a name here).

In 2001 Andrew died unexpectedly in front of me. A heart attack. A 34-year-old man dead of a heart attack? Andrew would be one of the canaries in the cage. I sued his primary care physician and the hospital, and my case was allowed to go through after I changed California State Law to do so making AB25 and AB 205 retroactive and allowing any same-sex partners with a case subjudice to proceed. Making history even in death. But my knowledge of HIV, which was extensive at his death, after living with him and it for so long, grew even more in the deposition process, talking with the coroner, with HIV experts across the state.

Seems protease inhibitors raise the cholesterol levels in those that take them and doctors must add in a statin drugs. We know that now, because of people like my late husband.

After his death, my inner circle continues to be comprised of those with HIV, living with AIDS. And I have written things to upset them, and the gay community about HIV. My book is entitled "You Can't Say That" because Bill LaPointe, then publisher of the Long Beach/Orange County Blade, a Southern California GLBT publication for which I still write, told me I could not say that if you contract HIV in this modern era you deserve it, because education about prevention has been around for 20 years and it's a hard virus to get. I slept with an HIV positive man for almost 12 years, doing all kinds of things, and never got the virus. I'm living proof safe sex works. And if I turn up HIV positive, I will have worked for it, made bad decisions and thus deserve it. Not that we shouldn't care. Many will deserve the heart attacks they have after years of bad food and no exercise, but we love them anyway.

And it is from this history that I look skeptically at the recent revelation that the drug Truvada can cut the risk of HIV infection through daily use 44 percent when given with information, condoms and the like, and up to 76 percent in those that take the drug daily (according to MSNBC).

First of all, SAFE SEX WORKS. Don't exchange body fluids, period. I know the backlash. I've seen the bareback ads on Craigslist (ads where men want to have sex without a condom), I've heard of people getting intentionally infected, I've seen the rise in PnP (party and play, unsafe sex and crystal use) in the community. I get it. In my opinion if people are behaving badly and getting HIV, what they need is a huge dose of personal responsibility.

Second of all, so far there is no approved HIV drug that is not toxic to the body. The side effects I've seen of these drugs are unspeakable, from sexual dreams so vivid people wake in all kinds of states to gambling addictions or suicidal thoughts; vomiting, nausea, headaches; diarrhea, blurred vision, insomnia ... half of the drugs those with HIV take are to manage the side effects of the other drugs they take.

For instance, what is Truvada? Well, it's been around for six years. It was approved in 2004. It's a nucleoside reverse transcriptase inhibitor, or an NRTi, in AIDS speak. There's other kinds, non-nukes, they're called, and then the protease inhibitors, each class of drug attacking the virus or its ability to replicate differently.

Truvada is two drugs combined, as many AIDS drugs are, Viread (tenofovir DF) and Emtriva (FTC, a relative of the earlier mentioned 3TC now called Epivir). In AIDS patients to be effective it must be combined with another drug, like a protease inhibitor or a non-nuke (NNRTi) like Sustiva.

Truvada's components are effective against Hepatitis B, and it's used off label for that already in some places. The drug's website lists possible side effects, the most common of which are diarrhea, nausea, fatigue, headache, dizziness, depression, insomnia, abnormal dreams and rash. And of course, it hasn't really been studied in healthy individuals that take the drug.

Everyone wants a pill, a fix, a cure-all for what ails us. Science is looking for the magic bullet pill that we can take and eat whatever we want and still lose weight. Because we are lazy.

The same for HIV. People think condoms aren't fun; they can ruin the moment. But I disprove of a pill that would make healthy people customers of drug companies when all they have to do is take control of their bodies and lives. How many will see this as a prevention and run out and have unprotected sex? Far too many, since so many are doing it now.

We already have emergency measures, morning after for people if they think they've become infected. They take the HAART therapy for a period of time. Every nurse that gets a needle stick knows this. Highly Active Anti-Retroviral Therapy (the cocktail, so to speak).

We need a cure for HIV and AIDS. We've always had a way to prevent it, it's called common sense and responsibility, though of course mistakes and accidents can happen. Condoms, while not easily accessible to everyone, are free at most clinics or Centers in the U.S., minimal at most drug stores and information is everywhere. If one day I turn up positive, I'll know why. It won't be because I didn't take a pill.

To hear more on this and other topics tune in to the Karel Show Monday through Friday 3pm to 6pm PST on KKGN Green960 San Francisco, KRXA AM 540 Monterey, KYNS San Luis Obispo, KJRB Spokane, iHeart Radio, iTunes and online at www.thekarelshow.com.

 

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HUFFPOST SUPER USER
tominnyc
01:34 AM on 12/01/2010
understand able as gay men who refer to themselves as 'clean'
agree hiv+ men deserve it
Karel is harsh but correct from his hiv-negative non-stigmatized gay perspective
I am making my You Deserve It tshirts for World AIDS Day to emphasize/communicate safer sex

i agree that prevention is free but not that people deserve it
it is offensive
02:25 AM on 11/30/2010
I don't think so much this is as big of an advancement in the United States, but for the countries where women do not have a choice to say no to sex, or require use of condoms, lest they fear being beaten. Any advancement like this should be taken as a great step forward, but things like this require a sense of responsibility too as to keep from having a surge in other STD's because all of the sudden people think they don't need to use condoms. Everyone can agree that people need to take more of a sense of responsibility but at the same time we also know that anything that can help with diseases of this magnitude can make a huge difference moving forward into the future. BTW I understand what you're saying regarding HIV medications being toxic but the newest HIV drugs are not necessarily anywhere close to as toxic as they used to be. I take Atripla (which has Truvada already in it along with one other ART) and it has had no adverse effects on me. The newer drugs are getting better and better and we have great opportunity to look at every possible avenue.
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Michael Friedman
freelance communications services
04:09 PM on 11/29/2010
" And if I turn up HIV positive, I will have worked for it, made bad decisions and thus deserve it. "

How respectful to those who, through lack of education due to poverty or other socio economic reasons, or social stigma due to homophobia, contract HIV.
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HUFFPOST BLOGGER
Charles Karel Bouley
Actor, Author, Comic
09:03 PM on 11/29/2010
Did I refer to them? We are talking USA here, and in that sentence, myself. Me. If I contract it. Given what I know. And are you saying ignorance about something because of one reason or another excuses bad behavior? Unsafe sex is risky. In 2010 not many in America don't know that. And if they're going to be having sex, they should. The info is out there. Sorry if you thought it offensive it was not intended as such.
10:48 PM on 11/29/2010
Charles,

Absolutely, unsafe sex spreads HIV. However, these interventions that you trumpet - condoms, monogamy, etc. - are flawed. For example, in a study recently published in the journal AIDS Patient Care and STDs, Magnus et al showed that black men who have sex with men in the DC area actually have higher rates (a LOT higher) of condomized sex, have fewer partners, and have lower rates of reporting ever having intentional non-condom receptive anal sex, the kind of sex most likely to result in HIV transmission. However, these men had HIV infection rates higher - again, a LOT higher - than white men who have sex with men. And what of the women who have unprotected sex only with their husbands, only to find out later that their husbands have given them the virus? How about people who have no means of making money other than selling sex? When getting food on the table is your #1 concern, the extra $150 that may come from not using a condom is worth the risk.

Yes. Unsafe sex is risky. That's absolutely true, and I doubt you'd find anyone to dispute that point. However, you grossly oversimplify the problems of the HIV population in the US today. Blaming the victim only propagates HIV/AIDS stigma and hatred.
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HUFFPOST SUPER USER
PaulAdams
03:52 PM on 11/29/2010
I disagree with you 100% (with all due respect). Anything that can inhibit transmission is a good thing. The goal of treatment from day one has been to stop the virus in various stages of its life cycle. This is just the logical progression of that, by preventing it from taking hold in the first place. I think it's a good thing, and if they do come up with a formula that is easy on the body and has the same effect, then it would be possible to stop this epidemic cold in portions of the population that are in risky situations (either by their own foolish choice or involuntarily).
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HUFFPOST BLOGGER
Charles Karel Bouley
Actor, Author, Comic
09:04 PM on 11/29/2010
This is not a vaccine. This is a potent combination of two AIDS drugs that can, in fact, limit transition if the data is correct. Safe sex limits transmission risk as much, does it not?
Josephius
No, not microbio, molecular bio and biochemistry!
03:29 PM on 11/29/2010
"Second of all, so far there is no approved HIV drug that is not toxic to the body."

Can you name ANY medical formulation used for any indication that doesn't have some side effects or toxicity?

"How many will see this as a prevention and run out and have unprotected sex? Far too many, since so many are doing it now."

Hmmm. Where have I heard this line of reasoning before? Oh yes, if we teach kids about sex in school, they are going to run out and do it and spread STDs and get pregnant. So, it's better to restrict accessibility and everything will just go away.

"We need a cure for HIV and AIDS. "

As soon as you can tell us how to identify and kill the cells where the viral genome has integrated and lies dormant (the very same cells that are involved in riding the body of infections), we'll be on it!
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cable1977
Against logic there is no armor like ignorance
03:11 PM on 11/29/2010
"In my opinion if people are behaving badly and getting HIV, what they need is a huge dose of personal responsibility."

That's a moral sentiment. However, moral sentiments tend to make poor public health policy.
01:34 PM on 11/29/2010
I agree that people should be practicing safe sex. However, I think that it is heinous to suggest that every person who contracts HIV is deserving of it.

Many clinicians see children on a daily basis who are vertically infected with HIV (i.e. from the mother, be it during pregnancy or breastfeeding). It cannot be reasonably suggested that these children are deserving of infection. There are also instances where people are infected with HIV through no fault of their own, such as needle-stick injuries in healthcare workers.

If we start to blame people for their own viral infections, where do we draw the line? Will we say that the person with the Epstein Barr Virus lymphoma is deserving of cancer for contracting the virus by a teenage kiss? Or that the college student with bacterial meningitis should not have chosen to stay in dorms, where infection rates are much higher?

When we start trying to attribute blame, we get into very murky territory. It doesn't really help anything. Emphasis should be placed on education, understanding, prevention and cure.
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HUFFPOST BLOGGER
Charles Karel Bouley
Actor, Author, Comic
09:06 PM on 11/29/2010
The blame was not the underlying theme; personal responsibility and the fact that perfectly healthy gay men don't need a potentially toxic AIDS drug daily, just more vigilance about safe sex. Y