To mark the UKC’s 10-year anniversary, Ian Kramer, former UKC director, reflects on the last ten years of the UK’s HIV epidemic
The present is certainly easier for people like us with HIV than the past. And I think the future will be more interesting than the past, but the past contains important lessons for the future. Consider these demands:
 The people and events that made a difference to life with HIV in the UK over the last decade (including panel on right below). |
ACT-UP UK activists presented these demands in July 1992. They could form the basis for the agenda today.
Calls for mandatory testing of immigrants and asylum seekers are now coming from the highest quarters in the Conservative Party, and the lowest parts of Fleet Street. More people come out of jail HIV positive than went in. Britain not only has not played a formative role in a global strategy on HIV, its own domestic HIV and Sexual Health Strategy has been widely condemned as a joke, marred by failure to take the advice of patients and provide serious funding for services. The condom/prostitute issue was raised but not definitively acted upon in the Strategy process. Benefits are still not flexible; housing is still scarce, especially for families affected by HIV. Women’s illnesses are not well treated, and the ‘promotion’ of gay sex still remains illegal for local authorities in England. The young people most at risk of HIV are the least likely to get good information about how to avoid it.
Plus ça change, plus c’est la même chose.
In 1993 the Jacksons moved to Albert Square. Mark Fowler had come out as HIV positive two years before, at Christmas 1991. 1993 was the year that HIV became respectable at last, provided you didn’t actually have it.
Diana, Princess of Wales was making visits and speeches, highlighting the plight of women and children with Aids. Tom Hanks portrayed a dignified gay man with HIV in ‘Philadelphia,’ Elizabeth Taylor started her very own Aids Foundation. But as Derek Jarman, the filmmaker, diarist, gardener and gay saint told Jeremy Isaacs, “There are very, very few people who have been as fortunate as I have; to be able to be open. For instance I was talking to my doctor the other day and he said, ‘Oh thank God you’re there, you’re the only patient I can actually openly talk about’.”
People were also still dying in large numbers in the rich world. We had pills,
but not good ones. Grassroots support groups, like Body Positive and others
started to professionalise. Full-time HIV work became a career path. Organisations
like the THT began to become institutions. There was money on the table from
government, and the HIV service organisations were happy to spend it, on aromatherapy,
lunch clubs, drop-in centres and salaries.
Street-fighting groups like ACT-UP UK were starting to fall apart; a new form of political activity seemed appropriate, one that could negotiate, rather than confront.
At the 9th International Aids conference in Berlin in 1992, the voice of people with HIV became heard. Out of that meeting grew GNP+, the International Community of Women Living with HIV and Aids, and the UKC, Positive Nation’s parent organisation.
Political contacts and political savvy enabled the HIV community to negotiate one of the most generous sets of benefit criteria in Europe. Compare the British standard of 400 T-Cells as a marker for exemption from the work test to Denmark’s insistence on full-blown Aids before benefits can be paid. The UKC and the patient movement kept the focus on the needs of individuals, as the organisations continued to grow and expand.
But the big news of the decade broke at the Vancouver Aids conference in 1996. Combination therapy worked. 1996 was the year people stopped dying in numbers. Despite NHS trusts who didn’t believe that the drugs would work as well in Cornwall as they did in California, and Aids denialists who went on promoting the idea that pills were poison, it looked as though the big battle was won. Gold standard treatment for all by the middle of the last decade has meant that HIV is now a manageable condition for most of us.
We got what we wanted, but at a price.
Closure, consolidation and reconfiguration were the order of the day for Aids service organisations. Smaller ones closed, and the large ones, like THT, got bigger. Feisty ones like George House Trust continued fiercely independent. Showplace facilities like the Landmark and the Lighthouse were closed or merged.
Most of us would agree, I think, that the price has been worth paying. Our medical needs are well provided for. The NHS provides a first rate service for HIV (not to be confused with the appalling state of most sexual health clinics).
Gay men have always been the largest group affected by HIV in the UK, and they still are, but they are not the fastest growing group. For several years now, more heterosexuals have been diagnosed with HIV than gay men, and two thirds of those heterosexual infections were acquired in Africa. Most people dying of HIV in the world are in Africa, and many Africans in the UK don’t do well either, despite the availability here of first-rate treatment and care. Africans present themselves later to medical services. Many come from places where there is little or no tradition of civil society, and rocking the boat to get what you want is unacceptable or dangerous. (I was demonstrating at the recent Aids conference in Paris, getting myself carried out of the auditorium for protesting at President Chirac, and a Ugandan friend commented that if he tried this at home, he’d be shot.)
Gay men with HIV were lucky; we came from a political tradition of community activism. We made uncompromising claims for respect. Shame is no deterrent to the shameless. We learned our civil disobedience from the civil rights movement, and it is time the debt was repaid. In the next 10 years, we must put our experience at the disposal of the African communities. Unless they become as mobilised and effective as possible, the future of HIV services in the UK is not rosy.
Quality services and quality treatment had to be fought for, and need to be fought for to be maintained. Revolution is permanent. We got what we needed because HIV was seen as an emergency. It is no longer seen as such.
We are being mainstreamed within the NHS, and as anyone who has been on an ordinary NHS medical ward lately will know, that is not desirable.
The new rhetoric of patient and public involvement in the NHS is a language we people with HIV well understand. We practically invented patient-led health care and design and delivery of services. If we preserve the knowledge that we had, prize the expertise of our surviving leaders - I would name Jonathan Grimshaw, John Campbell, Douglas Slater, Paul McCrory and Winnie Sseruma as examples among many - and skill our communities to fight, we might have a chance of fulfilling those demands of a decade ago in a decade’s time. But it will be harder, not easier, as HIV/Aids is normalised and at the same time ghettoised as an “imported” disease. Unless the HIV community, black, white, straight and gay, comes together to preserve what we have gained, and demand what we still require, we will lose what we have. A disease that affects relatively few in this country, and those few largely among ‘alien’ groups like gays and Africans, will not long remain on the priority list.
The prime enemy is no longer the virus. It is no longer even official ignorance or widespread prejudice. It is apathy, complacency and lack of concern for others, whose plight impacts our own. We need each other as much as we need the drugs. Unless we make some more noise, we will still be presenting those same old demands in 10 years time - and as I fully intend to be around then, and I expect so do you, it must be worth our while to battle on.
