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Better quality control required..

for condoms!


Robert was always careful. He had contracted HIV in 2000 ("January 14," he says with certainty) after an accident with a condom, and made sure that anyone he slept with was aware of his status. Then, in 2002, a condom broke again, this time with the man who is still his partner. "We flipped and freaked out," says Robert. "We didn't know what to do." They did what most people who are unaware of an alternative do and waited until a potentially positive HIV test result would show up. The test confirmed the worst.

But, as Robert was later to discover, it need not have done. In June 2005, he was browsing the web when he came across an advert for post-exposure prophylaxis (PEP), a cocktail of anti-retroviral drugs which, if taken quickly enough after infection, can prevent the onset of HIV. To make matters worse, PEP's life-saving potential had been recognised in the UK since the early 90s. "I was utterly gobsmacked," says Robert. "I realised that I had HIV and I didn't need to."

Now, he and his partner are planning to take the government to court in an attempt to improve accessibility to the life-saving treatment. And if the charge of clinical negligence is upheld, the implications - both medical and financial - could be enormous.

"I'm trying to stop other people from becoming infected," he says. "I wouldn't want to put anyone through the hell I've been through. Knowing that you have infected someone with a killer virus is a hard thing to swallow. To find out three years later that there's a cure, well, that's just crazy. Eight years passed between PEP being on the market and my infection, and many other people contracted HIV in the meantime. We think the Department of Health has been in breach of the European Convention of Human Rights."

PEP - a month-long course of strong medication misleadingly described by some as an HIV morning-after pill - is easily available to healthcare workers who have suffered needle-stick injuries, or to victims of rape and sexual assault. While it is available by request at all sexual health clinics, there have never been any official guidelines about administering it in instances of consensual sex. Last year, there were nearly 8,000 new HIV cases in the UK alone, and Robert argues that both lives and money could have been saved. "A course of these drugs costs £600, as compared to a life term of £1m for treating an HIV sufferer. And they're worried about 88 people dying from bird flu!"

The result of this administrative failure has been widespread ignorance - not just among the sexually active, but among GPs and A&E units throughout the country. "When I went for treatment at Guy's hospital [in London], why wasn't I told about PEP?" asks Robert. "I could have saved my partner. The circle can be broken."

Robert's first obstacle was getting legal aid. His solicitors had to persuade the Public Interest Advisory Panel (which grants legal aid) of the existence of PEP - despite a report funded by the Department of Health in 2003 which stated that "the NHS should make non-occupational PEP available for all who need it and develop protocols for provision". That done, Robert's law firm, Leigh Day & Co, now needs to persuade the courts that it is in the public interest to carry out a judicial review of the way the treatment is made available. The case will be issued in March.

"We want the government to make the product available to the whole population in any situation," says Frances Swaine, a senior partner at Leigh Day & Co. "We want a full and public campaign by the government to ensure that no one of reading age does not know that such a thing is available. And we want GPs and A&E departments to be fully informed about the treatment - that if someone embarks on the drugs within 72 hours, their chances of contracting HIV are next to nil."

The situation is complicated by the stance taken by the influential Terrence Higgins Trust, which has received funding from the government to spread the word about PEP, but only among high-risk groups such as gay and bisexual men and immigrants from sub-Saharan Africa. "It's important that the right people get PEP," says Will Nutland, head of health promotion at the trust. "We are not calling for it to be made available to the general population."

And although Nutland says the trust has run a "high-profile awareness campaign in England and Wales for the past two years", Robert claims it never reached Kent, where he lives. "The majority of gay people do not frequent the bars of London and Brighton," he says.

Julian was one of the luckier ones. Eight years ago the condom he was using with an HIV-positive man split, but he lived in London and had friends "in the know". Even then he needed to work hard to persuade the health worker at his local STD clinic that he wanted to undergo a course of PEP.

He remains HIV-negative, but his experience of taking the antiretrovirals is as strong an argument as any against those who claim their availability would encourage recklessness. "I felt so nauseous that I couldn't keep my food down," he says. Since the drugs - usually a mixture of AZT, 3TC and nelfinavir - need to be taken every day for a month, the idea that avoiding HIV is as simple as avoiding pregnancy is a fallacy. "It's the best contraceptive on the market," says Robert.

Why, then, did the Department of Health wait until 2003 to fund a report by the Medical Foundation for Aids and Sexual Health into the wider application of PEP? "The Department of Health met the Expert Advisory Group on Aids in 1997 and they said they would not allow it for sexual exposure, but only for occupational exposure," says Robert. "They basically made a moral decision, not one based on medical grounds."

Despite the fact that the government appears to have accepted the efficacy of PEP in cases of sexual transmission, a spokeswoman for the DoH would not tell the Guardian why its general availability was not being publicised.

Not everyone is convinced PEP works as effectively in cases of sexually transmitted HIV as it does when the virus has been accidentally passed on by a needle. But Robert is adamant this is not the case. He even questions the 72-hour-window theory by arguing that PEP can be taken up to two weeks after exposure to HIV, although by then the chances of preventing seroconversion - when the body has produced the antibodies that lead to a positive test result - are as low as 10%. "Would you take it for a month if you knew you had a 10% chance of avoiding HIV? Of course you would!"

But his main message is all about placing human lives - weaknesses and all - above moral censure. "This isn't about gay people. It's about all kinds - black, white, gay, straight, drug users and sex workers. We want 24-hour access for everyone, including military establishments and even naval ships - not only from genito-urinary clinics and a few A&E units." And the repercussions? "It could be the biggest compensation case ever"
 
  walkin on 2006-02-24
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