Health sites and memories

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."

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."

"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.

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.

Her blog is also called The Wisdom of Whores.

Found: Invest in the future

Found some more old stuff (I thought I'd completely lost it but found it in a web back-end, kindof like behind the dumpster, under something unmentionable ..)..

I used to edit a magazine for people living with AIDS in Sydney. I got very involved, as you do, and the whole experience was painful/joyful. I wrote, basically, a diatribe after I was ignored in an 'anniversary' edition after i left. as you unfortunately do. enough said.

anyway. it had some good stuff, still relevant I think in describing something of what the net can do for communities.

Cast of characters:

ACON is the big HIV/AIDS organisation in New South Wales
Talkabout is the magazine I edited.
PLWHA = people living with HIV/AIDS

Section from unpublished article, November 1998

(Suggestion Two): Invest in the future - Get Talkabout and the whole kit and caboodle onto the Internet.

It was searching for HIV/AIDS treatments info to put into Talkabout that actually got me using the net (now it's my job).

1995 was a big lull period in activism. Act-Up had finally folded and this was before the first protease inhibitors. I had to plough through three plus month old newsletters at ACON Library and climb a steep learning curve on what was actually news.

Then I met the Internet.

Even in 1995 there was a wealth of information out there, it was like going from the proverbial famine to feast. Pioneers like the Sisters of St. Elizabeth of Hungary [based in LA., see http://www.aegis.com/] were getting the info out and people were using it to secure change.

In a very short space of time we have come to the point where for individuals, staff or committee of agencies, life without the net, especially email, is hard to imagine. But this personal experience has yet to translate into a grasp of the community wide possibilities.

Such as? Well take the example of community legal centres. They have what's called an 'intranet' which links them all up. They can communicate and debate easily and find legal decisions and other information quickly. They started setting this up in the mid nineties. How useful would this be for those working in HIV/AIDS? Doctors already have access to such databases.

Another example is the development of small electronic support groups for those with very particular interests and very particular needs. The OzPoz list specifically for HIV+ gay men does this as does OzPlus and PosWomen. The net has the ability to easily link people despite geographic distance. This is part of the chaos of the net and it's essential function, which is communication. It is also basically confidential, an important point to PLWHA.

Despite these enormous new possibilities to improve lives and improve the information flow my impression from people working in HIV/AIDS is of sheer paralysing bewilderment on what to do. There seems to be this perceived need to 'get it right', which I interpret as betraying a deeper fear, born of bureaucratization, perhaps of the net itself and it's 'freeing' of information - there is no 'right' on the net. It isn't about publishing but communication. and you first get your web site up there, then you learn how to make it work well. Not the other way around. Things change too quickly.

A example of such paralysis is AFAO's new web site, which bases it's navigation entirely on plug-in software that many users wouldn't have or their computers couldn't handle (the same plug-in you'd see on a Warner Bros. or absolutvodka.com site). This ill-informed choice means that many visitors wouldn't get past the start page. It looks cute but isn't relating to it's audience. It's essentially about placing brochures in another medium and looking 'fabulous' but as we all know from our own sex lives that doesn't necessarily guarantee a good root.

That site says to me 'we are here by sufferance and aren't the least bit interested in where this might take us'.

ACON's absence of website says it all.

The net will remain inaccessible to some people, just as some people don't have access to a car. But the potential for the delivery of accurate, timely and useful information to people (at a minimum, if you give me two more pages I could outline lots more things the net can do) means that it should be *made available to people. This could mean anything from providing a list of net cafes and used and approved web sites to supporting development of net access at places like the Sydney PWA Centre.

Like the phone, the net is no longer an added extra or a luxury and any continuing failure to take up the possibilities means that ordinary PLWHA aren't getting the best service.

Found: The net closes

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