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The battle for the HIV 'morning after' drug
12th March 2008
Both Robert and his partner were unaware that a 'morning after' drug for HIV existed which, if taken up to three days after the exposure, could have prevented them from contracting the virus.
According to AIDS charity the Terrence Higgins Trust, post-exposure prophylaxis (PEP) has been shown in studies to reduce the chance of infection after the HIV virus has entered the body by 80%. The treatment involves a month-long course of anti-retroviral drugs - the same drugs taken by people with AIDS - being administered within 72 hours of exposure. The side effects are grim, and include nausea and headaches, but are so far only known to be short-term.
If Robert and his partner had known about PEP, they would have been denied the treatment anyway, because up until a couple of years ago it was only available in occupational exposure cases - for instance, where a nurse is accidentally pricked by a needle - and not in sexual exposure cases.
Six years after contracting HIV, Robert is unable to work because of poor health, and spent most of the last year housebound and on morphine. But now he and his 26-year-old partner are busy preparing to take the government to a judicial review, accusing them of denying people access to PEP.
"The worst of it is that I could still infect someone with HIV today, and they probably wouldn't get PEP."
The Department of Health says it recommends that the NHS make the treatment available to high-risk patients as part of HIV prevention services. Its expert advisory group on AIDS has produced advice for doctors on the most appropriate situations for PEP prescription, and it says that, as with any other medicine, doctors can prescribe PEP outside this guidance on an individual case-by-case basis.
Yet according to the Terrence Higgins Trust, only clinics in London and Brighton are routinely offering PEP, and the chances of being prescribed it elsewhere around the country are "patchy". Despite the all-important time factor, clinics are not open seven days a week or 24 hours a day. And whether or not you are prescribed PEP depends on factors such as what kind of sex (vaginal, anal or oral) you have had.
Robert believes PEP should be readily available to anyone who may have been exposed to the virus. "In other countries in Europe it's much easier to get hold of," he says. "They recognise that it's worth spending £1000 on somebody for PEP, rather than the £1m it may cost to treat someone with HIV for a lifetime.
The government's line on PEP is that it is not a substitute for safer sex. "Condom use continues to be the main HIV prevention message," according to a spokeswoman. "[PEP] can result in very unpleasant short-term adverse effects and unknown long-term effects and should not be seen as a 'morning after pill'. Advice from our expert advisory group on AIDS, and others in the field, is that there is very little evidence at present that PEP is effective in cases other than 'needle-stick' injuries to healthcare workers."
Nevertheless, the government recently funded an information campaign targeting the gay community in major cities to let them know about the existence of PEP.
Robert believes they should go further. "What they're doing falls short, because they are only targeting gay people, and they are only targeting cities. Yet most new gay infections are happening in 15-24 year olds before they reach cities. They have no knowledge of PEP, and when they arrive in London they have loads of sex - before you know it, they have HIV.
"They're also not advertising to heterosexuals, when 50% of all new infections are in the heterosexual community."
His legal team have five demands for the government:
- all people with HIV to be counselled about PEP;
- 24-hour access to the drugs from HIV centres, clinics and accident & emergency departments;
- an extension of the deadline for treatment from 72 hours to two weeks;
- training for all GPs and A&E departments about PEP;
- a major nationwide information campaign and education about PEP in schools.
"We need to start with education in schools, because a lot of the infections are in the younger age group. We don't believe sex education at the moment is sufficient. There must be specific reference to HIV and to PEP. Then if youngsters do get too drunk and realise they've have had unprotected sex, they can do something about it."
Robert hopes the Department of Health will be willing to meet with him to discuss his demands before the case reaches the high court.
"This is not a vendetta against the department," he insists. "All we want to do is achieve equality and access to treatment. We just want to make sure that no one else endures what we've endured."
Even if his case fails, Robert believes the publicity it is likely to receive could help inform a new generation of people about PEP.
"If this was a drug that prevented you getting cancer, it would be widely talked about," he says. "It's only because of the stigma attached to HIV that it hasn't been. The more this issue's discussed, the better things will become."
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