December 2008 Archives

A Reader Said:

paul you seem very upbeat about a possible cure for this plague on distant horizon light has started to appear at the end of the tunnel but big pharma will fight tooth and nail to keep it as chronic condition like diabetes 50 billion aids pharma is not going to disappear overnight in meantime natural approaches ie vegetarian diet (yogurt and bread) yoga ayurveda meds homeopathy ,vegetable juicing.siddha massage,refloxolgy ice compressionon organs,castrol oil massage.aroma oils,fastingonce a week, vitamin c iv and ozoneiv not forgetting blood electrification have to be given equal chance on your forum in the time being

I say:

No they don’t.

OK, well they can get an ‘equal chance’ but they need to play by the same rules. I am what they call ‘data driven’- meaning I try to let the data tell me what they tell me. Any approach to treating HIV disease, whether it be ARVs or acupuncture or stem cells or chanting to the giant flying spaghetti monster in sky all get looked at the same way- through the lens of evidence. I do not concern myself with value judgment labels like ‘natural’ or ‘holistic’ or ‘corporate’ or ‘traditional’ or ‘western.’ I try to go where the evidence takes me- and damn the torpedoes.

It isn’t that I love, or even like, or even don’t hate pharma. I think there is something fundamentally disgusting about selling health. I feel the same about food, and shelter and really most things. I am against the profit system, against capitalism.

I am also against anti-science, whether it dresses itself up in anti-establishment costuming or not. Calling something ‘natural’ means nothing to me- it is simply a value judgment; it doesn’t mean anything. There is nothing more natural than HIV- and it is my mortal enemy. There is also nothing more natural than (2S)-1-[(2S,4R)-2-hydroxy-4-[[(1S,2R)-2-hydroxy-2,3-dihydro-1H-inden-1-yl]carbamoyl]-5-phenyl-pentyl]-4-(pyridin-3-ylmethyl)-N-tert-butyl-piperazine-2-carboxamide – also known as Crixivan, which helped to save my life.

Non ARVs had, and continue to have, their chance to show what they can do. The world does not lack for people who want to explore and study the properties of plants, vitamins, massage and so on. Do the research, make sure it is well designed, have it peer reviewed, publish or present it, give me a chance to look it over, to ask questions, to examine with a skeptic’s eye- and I am happy to give it equal billing in this, and any other forum.

Just don’t expect that I will be any less skeptical of such approaches than I am about ARV research. It is the same game, and everyone plays by the same rules. The burden of proof is always, always, always on the people who support a hypothesis. If you think that a particular approach works- prove it.

That is all I ask.

As everyone knows yesterday was the day for the world to pay attention to AIDS. As a person with AIDS, and someone who is fortunate enough to pull a paycheck fighting this scourge, Word AIDS Day is not particularly impactful to me.
Yesterday morning- like every morning- I woke up, made myself a pot of coffee and read the New York Times. Expecting to find a boilerplate article for WAD- ‘we’ve come so far, we have so far to go’- instead I was brought back to one of the most poignant moments in my AIDS story.
The article in question was not about AIDS. It was about Kalaupapa, the world famous quarantine for people with Hansen’s Disease- otherwise known as a leper colony. Kalaupapa is on small, relatively undeveloped island of Molokai, where the tallest building is something like 3 stories. It is surrounded by some of the world’s highest sea cliffs- making it an ideal place to isolate people.
It is also preposterously beautiful.
I visited there back when I was pretty sick. It was my first visit to Hawaii, and I wanted to check this place out. To get there I had to hike down a long, steep, switch-back trial for about an hour. Once there I was greeted by the residents who gave us a tour and history of this place.
Some of the people I spoke with were among the first to be treated successfully for Hanson’s. At the time, I had recently begun taking HIV meds. I felt connected to them, in a sort of way.
Many parallels have been drawn between HIV and leprosy. The similarities are fairly obvious. The thing about my visit there was it was the first time where I imagined myself as a survivor of HIV. I saw these people who had been wrenched from their lives, from their families, from their communities, isolated in a remote if beautiful place, and outlived their disease.
I don’t know if I will outlive HIV. But my visit to Kalaupapa gave me hope that I might.