A friend pinged with with info about a patient community website he'd just found; Patients Like Me.
He'd found it very useful to exchange experiences and information with those with his condition. I had a look around the site and found thriving communities, including one for HIV/AIDS.
This took me right back to two decades ago (gulp) when the first internet responses to AIDS appeared. In the early 90s I edited a magazine which needed the latest research information. This, literally, came off the boat, so was several months old. So when I encountered the net it was with astonishment that all this info was there and brand new!
The info was pure text and basically a fairly unusable, certainly unsearchable, database interface. But it was astonishing.
What I was looking at was the AIDS Education Global Information System (AEGiS), which is now the world's largest Database of AIDS information. (The only resource larger is the U.S. National Library of Medicine, but it only offers some of its information on a website).
Since 1992, AEGiS has sought out scientific abstracts from local, regional and international AIDS conferences, related news, reports, and journal articles and compiled them a fully-indexed, cross-referenced and keywords searchable database.
The site is deliberately light on visuals that would make it difficult to access for those with slower computers.
It was originally started as a small electronic bulletin board system (BBS) by Jamie Jemison in 1986. Sister Mary Elizabeth Clark, a transsexual pioneer, and US Navy/US Army veteran took it over in 1990, inspired by meeting an isolated young man with AIDS in rural Missouri. Under her direction and tireless effort, the database grew and grew.
She worked 18-hour days from the living room of the mobile home she shared with her aging parents. It sits just across San Juan Creek near LA from the new 1,700-square-foot office, which Clark's 93-year-old father, Ed, happened upon and recommended for AEGiS just months before he died. They moved into that office only a few years ago.
AEGiS is nowadays funded by the US National Library of Medicine, Elton John AIDS Foundation, Boehringer Ingelheim, Bristol-Myers Squibb, John M Lloyd Foundation, Roche / Trimeris, and the Bridgestone/Firestone Trust.Sister Clark is one of my heroes, a real web pioneer and a true inspiration.
She's received many awards including the 'Award of Courage' from the American Foundation for AIDS Research, and the Human Rights Award from the International Assn. of Physicians in AIDS Care. AEGiS was nominated for U.N. honors in 1999, 2001 and 2003.
Another hero and inspiration is epidemiologist Elizabeth Pisani.
HIV/AIDS work is very political, including in affected communities, and that slants priorities and funding.
A good example would be the lack of promotion for many years of a 'negative' status for gay men - it was seen as somehow undermining HIV+ gay men. I suffered a lot of grief for that view when I worked in the area.
Pisani talks a lot of sense on these sorts of topics:
The problem, Pisani says, is that 80% of the Pepfar (Bush's AIDS initiative) budget goes on treatment. "Pepfar says great, we've got 1.8 million people in treatment. And next year it will be another 1.8 million! That will mean 3.6 million people. It's exponential - and that's the biggest question mark over the entire approach to Africa. The more treatment you have, the more infection you get.""Is not a picnic" is putting it mildly, you can expect to live around 25 years on ARVs. It makes me despair that so many young gay men are condemning themselves to shorter lives without a single clue that this is what they're doing by ignoring the condoms. Plus the government is cutting back on preventions spend.
ARVs [antiretroviral drugs] reduce people's viral load, she agrees, making them less likely to infect someone else - as long as they don't miss a single dose. "But it also keeps them alive longer, and healthy enough to want to have sex. You only have to look at the experience of the UK or US gay communities where we've had more or less universal access to ARVs for at least eight or nine years, and the number of new infections are rising. More people are living longer with HIV, and there is what we call behavioural disinhibition: 'Fuck the condoms, I don't need them any more, because if he's positive he'll be on drugs, so he probably won't infect me. And if I do get infected, it would be annoying, but not the end of the world.'
"But having Aids is not a picnic. Yes, it's great that all this stuff on treatment is happening. But it becomes all the more urgent to have effective prevention. And that's not happening."
Pisani did a few interviews in the UK last month for her brilliant book The Wisdom of Whores: Bureaucrats, Brothels, and the Business of AIDS.
On News24's HardTalk, professional dick Stephen Sackur spent a lot of time quizzing her about 'mafia connections'.
- You can watch the interview here (23 minutes, RealVideo)
By contrast Andrew Marr, was more interested and asked great questions.