UKC has made it to 10, thanks to the dedication, vision and hard work of many people. In the year of the Waco siege, when a ‘browser’ for the internet was invented, and the Concorde trial showed that AZT was not effective on its own, the UK Coalition of People Living with HIV and Aids was formed.
We were fighting against Aids, fighting for our dignity and the right to a decent death. The only weapons were the people involved. We were fighting for the same basic human rights as everyone else, but as people with HIV.
1996 gave us ammunition to fight the war inside ourselves. A decade of tea and sympathy was swept away in favour of combination therapy to keep some of us alive to fight another day, and another.
Everything changes: now we have had to stop fighting and find partners to work with us to break down the stigma, fear and misinformation so that we can get to a stage where having HIV doesn’t mean you lose your job, your home, your ‘friends’, your dignity.
We’ve come a long way, but society has kept us ‘special’ by treating us differently, making us ‘disabled’.
We need solidarity on issues that affect us because we are HIV positive. Solidarity
that respects we are all different, but that we are all people despite our
backgrounds and lifestyles. To me that means we still need a UKC.
Bernard Forbes, UKC Chair
The agreement finally thrashed out on cheap HIV drugs for developing countries at the World Trade Organisation talks is historic, and welcome. (See World News)
It strengthens, if not sets in stone, the idea that medicine is too important, and denying it too grave an offence against human rights, to allow normal marketing forces to rule. You can’t sell nelfinavir like Nikes.
The agreement comes with many strings attached. And it’s only good as it stands for two years. In 2005 countries like India have to sign the TRIPS agreement, which means that, from then on, they won’t be allowed to copy any newly-patented drugs. The result will be that - once again - developing countries will be palmed off with treatments that will steadily become more obsolete, and in time we will be back to two-tier world medicine.
And rich and middle-income countries are excluded from the agreement and will pay the same old high prices.
So they should, you’re thinking. The rich world has a moral obligation to pay the market rate. To bring a single new medicine to market can cost hundreds of millions of dollars. Someone needs to pay the R&D costs of the drug companies. Well, the companies may find their hands forced over their prices - and not just in the ‘third world’.
The recent furore about asylum seekers with HIV was fuelled partly by xenophobia, partly by public health paranoia. But what really scares the powers-that-be is the spiralling cost of HIV treatment. One large HIV clinic recently told PN it was vetoing patients’ applications for compassionate release of new, unlicensed HIV drugs like atazanavir and fosamprenavir - because of the likely future cost.In the USA, because of bankrupt state budgets, treatment rationing is already a reality for the unemployed. There are people in Texas as effectively excluded from antiretrovirals as people in Tanzania.
HIV is incurable, so needs lifelong treatment. It’s recent, so requires expensive hi-tech drugs. And it continues an apparently relentless advance. In 10 years’ time there will be a lot more of us around and we will be much, much more expensive to treat. HIV badly needs cheaper answers.
Even rich governments may, in the end, find themselves locked in battle with
the pharmacos over the cost of HIV drugs.
Gus Cairns, Editor in Chief
