We Don’t Need Your Pills, Thank You
by Charles Karel Bouley II
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 2x 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 cell phone) 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 Merk, 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 say the recent revelation that the drug Truvada can cut the risk of HIV infection through daily use 44% when given with information, condoms and the like, and up to 76% in those that take the drug daily (according to MSNBC http://www.msnbc.msn.com/id/40333614/ns/health-mens_health/) is nothing more than a way to make clients out of a population that doesn’t need pills, healthy gay men.
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. Gay men are behaving badly and getting HIV. Well, what they need is a huge dose of personal responsibility, not a pill.
First of all, if this drug is like all the others AIDS drugs it’s toxic. There is no approved HIV drug that is not toxic to the body, period. The side effects 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 beyond belief; 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. But what can it do to you?
Well, from the website for the drug, here’s just a few things:
• Lactic acidosis, which can be fatal, and severe liver problems have been reported in people taking nucleoside reverse transcriptase inhibitors (NRTIs). Contact your doctor immediately if you experience nausea, vomiting, or unusual or unexpected stomach discomfort; weakness and tiredness; shortness of breath; weakness in the arms and legs; yellowing of the skin or eyes; or pain in the upper stomach area.?
• The Viread in Truvada may cause bone problems. In one clinical trial conducted by the manufacturer involving HIV-positive patients who were new to HIV therapy, Viread [combined with Sustiva and Epivir] caused decreases in bone mineral density (osteopenia) at the hip and spine. Researchers are currently looking into the seriousness of this possible side effect. If you have a history of bone fracture or are at risk for osteopenia, your doctor may want to consider ordering bone scans on a regular basis while you are taking Truvada. While it’s not clear if calcium and vitamin D supplementation can help this side effect, it might be beneficial if you are taking Viread.?
• Some patients treated with Viread have had kidney problems
• The Viread in Truvada can be problematic for HIV-positive people who have a history of kidney problems (renal impairment). If you have a history of kidney problems, including kidney problems after using the hepatitis drug Hepsera (adefovir), your doctor will need to order a simple laboratory test to calculate your “creatinine clearance,” which is a measure of your kidney function. Depending on the results of this test, you may not be able to take Truvada. It is always important to be careful if using Truvada in combination with drugs that cause kidney problems or other drugs that are removed from the body by the kidneys.?
• HIV drug regimens containing nucleoside reverse transcriptase inhibitors (NRTIs), including Truvada, can cause increased fat levels (cholesterol and triglycerides) in the blood, and abnormal body-shape changes (lipodystrophy; including increased fat around the abdomen, breasts, and back of the neck, as well as decreased fat in the face, arms, and legs).
• The most common side effects of Truvada 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.
See the bullet point above that says Lipodystrophy. Let me tell you about buffalo humps, as those in the know call them. Andrew got two of them. Barely noticeable, behind his neck and in his lower abdomen. No one knew what to do at the time, short of surgery, but the humps would appear elsewhere. Big fat humps. So his doctor put him on injectable Serostim, recombinant human growth hormone. Three times a week we’d give Andrew a $400 shot. Yup, a box of Serostim, seven injections, $2800 our copay; Experimental and all.
He died with those damned humps. He hated them. And healthy gay men won’t like them either.
And let’s talk about tens of thousands of people waking up so terrified because they don’t know if what just happened was real, or a dream, and the dream was something that would make any creation by Clive Barker or Tim Burton pale by comparison. That little side effect stated “abnormal dreams” is the understatement of the century. I’ve slept next to those dreams, they can be horrific.
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. Gay men are getting lazy. Condoms suck. They ruin the moment. I want to feel this or taste that or whatever reason someone has for not having safe sex. But to bring forth this pill, to make healthy people customers of drug companies when all they have to do is take control of their bodies and lives is not only ridiculous but seems almost criminal. 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.
No, this is not a good thing for the gay community, nor is it good news for the world. AIDS has always been preventable, ALWAYS. Use a condom. Don’t swap blood or fluids. Be responsible.
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. One day I may turn up positive, and if I do, I’ll know why. It will because I messed up, not because I didn’t take a pill.
Truvada, thanks, but no thanks. Perfectly healthy gay men don’t need a pill that can give them such side effects to stay that way; nor do they need to spend the billions on this drug that this could generate. Condoms are free at most clinics or Centers, minimal at most drug stores and information is everywhere.
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