Wild men who caught and sang the sun in flight,
And learn, too late, they grieved it on its way,
Do not go gentle into that good night.

Sunday, March 19, 2006

Another Potential Cure

Image hosting by PhotobucketSeems like every couple of months at the moment, there's some potential cure or another advertised. Since I've been diagnosed, I think some of the best examples are crocodile blood and epilepsy pills, but there's another one in the offing that sounds like it's currently getting a whole load of spin from its company, being advertised as a cure for HIV while still very far from actually being able to do that, other than hypothetically. While, obviously, I'm in favour of enormous amounts of research being done into finding a cure, I'm not wildly keen on the amount of flag waving and ticker tape parades going on for early stage research and results that are only hypothetical. This drug, like the sodium valproate option sounds like it breaks down the virus in the system but not in the brain, so I'm not sure if that means it would replace antiretroviral dependency with another "drugs or death" option.

If there was a single pill that would completely cure HIV, I'm not sure it would make economic sense for drugs companies to release it, when a lifetime dependency to HAART drugs earns them over £15k per patient per annum. What does make sense for them is to allow incremental advances to be released, but not major leaps forward. They have to keep ahead of the opposition, but not too far ahead, or then the whole industry collapses. The HIV drugs industry is worth an awful lot of money and they depend on people being seropositive just as much as we depend on them for the drugs. It's a symbiotic economy. HIV disappears, all those wealthy doctors and researchers (and their investors) suddenly have to find other avenues for gaining obscene individual wealth while Africans die in their hundreds of thousands.

And would we, the HIV+ people of the world, take that pill? There's a culture built up around HIV now because of the abject fear instilled in mainstream society around the virus, so we're subtly nudged into a ghetto subculture of gays, junkies and hookers and suddenly we've got our own argot of serodiscordance and protease inhibitors, our own artists, poets and writers, we've got our own magazines, our own ad campaigns, our charities, our doctors - a whole fucking world of seropositivity. What the hell happens to that when a cure comes out?

Essentially, would the men and women who've been positive since Diff'rent Strokes was still new and fresh and funny actually want to take that pill? Culturally, we're encouraged to define our identity around the virus - sorry, the disability - we have, are we really going to be able to abandon all of that? Look at the resistance to cochlear implants among the Deaf community - would the pozzee possee really want to give up everything we've clawed together around us in order to cushion the fact that we've been living with cheeks like autobots, running around in the shadow of death for a very long time.

In Sweden, a woman who was an active member of the HIV+ campaigning community seemed to have miraculously recovered from the virus. It transpired that she'd been misdiagnosed, then threw herself into health campaigning, into pushing for improved rights for HIV+ people in a country with quite draconian legislation around disclosure and transmission. Within a few months, she tested positive again, and without misdiagnosis being to blame. The doctors said she was reckless and stupid for exposing herself to risk of infection, but the more astute commentators observed that it was probably inevitable that the darling of the campaigning movement, telling everyone how to live healthily with HIV had become, psychologically, so HIV+ that to take away her seropositivity would be like taking away her gender, her language or her ethnicity.

In our current cultural melieu, being diagnosed positive forces a massive change in psychological identification on those infected by the virus - I don't know how readily those who have lived with HIV for ten, twenty years would be prepared to go through another massive paradigmatic shift in self-definition. How many people who have gone through the struggle of coming out as lesbian, gay or bisexual would take a pill which would, "make them straight"? There'd always be that lingering sense of not being who you were meant to be, of masking your true identity.

I've had this virus for about a year, if my maths are right, been diagnosed for six months and it's changed my life. Saved my life, my mother says. Since diagnosis, I've lost 10kg, gone to the gym very regularly, improved my fitness immensely, moved to living by myself, sadly ended a long-term relationship, stopped taking drugs, taken a more responsible view towards my finances, started writing professionally, regained my artistic side and, yes, did I mention, stopping taking drugs?

Sure, many people go the other way and see HIV as a path towards the Dark Side, hurling themselves into a vortex of drug abuse and masked depression, but there are plenty of people for whom it's been an immensely powerful wake-up call. How many of us would give up that thing to struggle against? The reminder of the frailty of life that, like a Dutch Vanitas painting, speaks of the need to consider our true priorities.

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1 comment:

OLY said...

After 14 yrs.. yeah I would take the pill.
It sure has been a rollercoaster ride and a giant kick up the bum, and with all that said and done.. I would take the pill.