AIDS denialism kills, period.

[Update, May 3: Apparently someone decided to send used bathroom tissue in the mail to my house, just sitting folded up in a plain envelope. In case you didn't know, mailing biological samples without proper containment is a felony violation of the Mailable Dangerous Goods regulations. We burned the letter in effigy, but I figured that the person in Florida who sent it might like to know this little detail.]

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It's been two weeks since my post about my cousin, Karri Stokely. This is probably a good point to take a step back and reconcile some issues. As Seth Kalichman wrote, [at least some of] my anger should have been directed at those who drew Karri into the trap, rather than at Karri herself.

Let's start with a couple corrections. As was pointed out to me, Karri's stated reason for becoming HIV-positive was contact with tainted blood as an EMT, not as a nurse. As to whether this explanation is true, I refuse to speculate, as I don't believe anyone deserves to be infected with HIV.*

Also, though Karri was suspected to be HIV+ while pregnant with one of her children, fortunately that child didn't test HIV+ after the maternal antibodies broke down. (I was previously under the impression that AZT was administered to at least one of the children as a preventative, though I still don't have a clear yes-or-no to that question.) Karri's kids are very lucky, in any case, and I couldn't be happier about that.

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After I wrote the original post, I encountered a whole world of denialists — and people who work to expose their misinformation — that I never expected to find. Seth Kalichman, a professor who blogs about the denialism movement, ran across my previous post and reblogged it.

It wasn't until I started receiving blog comments and e-mails that I realized how deep the denialist roots go. Since I have long since accepted the library-filling amounts of data correlating HIV, AIDS, and ARC, I didn't realize people were still holding on to beliefs that were debunked as much as twenty-five years ago. What's more, some of these folks seem to have a sketchy grip on logic, as evidenced by some of the statements in my previous post's comments (most of which Karri has said too). A few highlights:

"For every 1 "AIDS Denialist" that dies, 100,000 AIDS Patients die receiving medications."
(I don't even know where to begin with this line of thinking, but I did a thorough dissection and rebuttal of it in my post's comment section. I'm pretty sure that I know who posted this, but I'm not going to call out more names here.)

"HIV infection is extremely hard to prove."
(The cheap screening tests for HIV antibodies alone are accurate to a degree greater than 99% on sensitivity and greater than 98% on specificity. Coupled with a Western blot, both measures increase to better than 99.8%; and with a HIV RNA test, greater than 99.9996%. By the strictest definition of the word, that's not "proof", but this accuracy is higher than the accuracy of tests for almost any other health condition.)

"A flu shot, a common cold, ANYHTING [sic] CAN TRIGGER A POSITIVE RESPONSE."

(Wrong; this is the measure of specificity noted in the above statement.)

"Even the FDA hasn't approved Viral Load tests for detecting the presence of HIV."

(Wrong.)

"30 years later people are still "understanding" this virus."
(Of course we are! We know more about HIV today than we know about the common cold. Every pathogen that is a threat to health continues to be studied today; that's the whole point of disease research.)

"If that was the case and you could see it with a microscope in EVERY HIV patient then we wouldn't be having this discussion. The proof would be over whelming! [sic]"
(HIV has in fact been seen on microscopes.)

These completely wrong arguments venture into the absurd, such as questioning the scientific method itself. You know, those little processes developed over the last 500 years or so to provide objective observations... without which, modern technology would not exist. The same processes which are based on logical observations stretching back more than 2500 years. Somehow, these folks think that it's all suddenly invalid, but only for their specific case.

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In all the above, I didn't address the core of the denialists' argument, which most (if not all) of them share, namely:

"The antiretroviral (HIV) drug manufacturers are selling poison that kills patients."

This is just plain stupid. And before I can explain why, I have to point out that I fully agree that antiretroviral (ARV) drugs are very hard on the human body, not surprising considering the work they have to do at the cellular level.

I also believe, just like the denialists, that the drug companies are making obscenely high profits, more than they should. This profit motive is exactly why drug companies do not sell consumer drugs designed to kill people. Patients are the drug companies' customers. The profit motive pushes companies to deliver more and more money over time (growth), which is a bit of a problem if customers die. Dead customers can't buy drugs.

Anyone who didn't fail microeconomics in high school should understand this simple concept. If this elementary logic still escapes you, I can only feel sorry for you to a point.

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So let's make one thing very clear right now: Karri Stokely's crusade to "educate" the public about the HIV "myth" was not courageous, or strong, or helpful, or any such positive thing. It was cowardly, because like most of the denialists, she wanted desperately to believe that her diagnosis was wrong in some way, and started to believe outright lies rather than reality. Whether intentional or not, it was maliciously deadly, as she worked to lure more people into the same trap. I'm right to be angry at her taking on the role of the pretty face of denial, but so too should I be angry at those who lured her in.

I've been very careful to give those in denial a voice when they have posted comments here. As of this writing, I've only refrained from approving one comment (which was just a bunch of expletives). There's nothing I want more than to see HIV+ people live long, healthy lives, and for that reason, I have been open to anyone commenting or e-mailing me about HIV/AIDS. It is only through well-documented information, and continued research, that we will beat this disease and its lethal effects. 

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* Regarding whether someone "deserves" HIV: I have been asked whether I think that, for instance, Dr. Peter Duesberg deserves it for leading so many people to death. No, not even in his case. While his academically posed questions have long since been refuted, and his arguments form the foundation of the denialism movement, even he does not deserve the hell that is HIV/AIDS.

Goodbye and good riddance, Karri Stokely, you AIDS denialist bitch.

[Update, April 26: I have posted a follow-up to this, which reconciles some of the anger vented here.]

Before you think I'm being insensitive, please let me tell you a story about my cousin. Karri Grenley Stokely is HIV-positive, allegedly contracted by contact with tainted blood as a hospital nurse. She was diagnosed in 1996.

After living on the generations of various HIV treatment medications, a few years ago, she found her way into the AIDS denialism movement. She gave up her meds, and then went on a speaking tour to claim that the medications, not the virus, were to blame for her symptoms. You can read her story yourself, or even see her Myspace page titled "Rethink AIDS".

For a while, she was pelting my mother and several aunts and uncles (unbeknownst to me) with self-promoting e-mails championing her views, including a documentary she helped to promote called House of Numbers. While the creator of that documentary has a partial point — that the pharmaceutical industry effectively has everybody on a leash — its view that HIV and AIDS are unrelated makes me furious. Haven't we seen enough of this bullshit already?

I have several close friends who are HIV+, and they work hard to take care of their health (far beyond what I do, that's for sure). It still breaks my heart that they have to bear that burden, and the stigma associated with it. But none of them deny their status if asked; none of them go into a sexual encounter without (at least some) protection; and absolutely none of them claim that HIV is unrelated to their health problems.

Of course, HIV medications are not simple drugs. They do put a hell of a strain on the human body, there's no doubt about that. They are fighting one of the most resilient microorganisms the modern world has ever seen, and in the process, the medications cause a laundry list of side effects (enough to make someone just reading that list nauseous). There is not yet a cure or a definitive vaccine, but research continues.

So when I received a link to a YouTube video from my mother, where Karri is interviewed outside a screening of House of Numbers, I was furious. I looked into the situation further, and found that she had been giving lectures (just search YouTube for her name)... spreading disinformation and disproven claims with a cute face and a smile, just as a new generation of high school students are growing up in a world that has always known AIDS from their point of view. Spreading this disinformation could kill them.

I received news this morning that Karri is in hospice care with a bad pneumonia infection. As any rational person would deduce from the above, it is an opportunistic infection, known as part of ARC (AIDS-related complex). Most people can fight off most forms of pneumonia with antibiotic and antiviral drugs — and we can thank AIDS research for invention of the antivirals. Karri is not able to fight this one off, not because it's a strange or particularly strong infection, but because her immune system is too compromised to do anything about it anymore.

The person who told me asked me not to say anything about it, to keep it quiet. I'm sorry, Karri, but your shameful actions drove me to shout this to the world:

Karri Stokely, you are getting what you deserve.

Yes, that's a horrific thing to say. I've never before said that about any dying person. Karri, however, has done something much more horrific herself: She has played the pied piper to audiences who are confused and looking for answers, and her unscientific, already debunked answers will get some of those people killed, likely in slow, tortuous ways. Her public denial of the HIV/AIDS connection is itself a virus of the mind, and she has been spreading that virus to the world, consequences be damned.

I'm sorry to Karri's husband, and to her children, who will soon be without a mother, though I'm happy that Karri was able to have time with them without the drug side effects. I'm sorry to Karri's mother, who will now outlive her own child. No one, Karri included, deserves HIV. On the flip side, no one deserves to be harangued by deadly false hope.

To my friends who are HIV+ and taking care of yourselves, I applaud you for keeping it together. I can't begin to imagine how it has reshaped your life.

To those who are HIV-, do what I do. Get tested regularly. Be vigilant about your health. Learn about HIV and other STIs, and talk to your doctor about them.

Regardless of your status, keep yourself protected. The most caring thing you can do for your sexual partner is to cover it up. (Most of the people I know enjoy rubber, right? ...Oh, here's the lyrics for that as well.)

This posting may mean that family members, who didn't know much about my personal life, will discover that I have a very "alternative" view of sexuality. As my inaugural post on this too-infrequent blog said, I'm not hiding myself anymore, so I had no qualms about calling out people, myself included, by name. The topic of AIDS disinformation makes it ever more important for me to stand out and be seen... consequences be damned. 

[After the break, if you wish to read them, my e-mail communications with my family about this topic, from when Karri was promoting House of Numbers in 2009, are included in their entirety. Considering the current situation, some of the things I wrote were awfully prophetic — or would be, if it weren't for the scientific fact that HIV and AIDS are known to be directly linked.]