A disease comes out of the closet

Observations on health

If we were hit by another disease on the scale of the Aids epidemic, would we be better prepared? Or would officialdom be as slow off the mark as it was with Aids in the early 1980s?

Despite the Department of Health's assurances that the lessons have been learnt, I have a discouraging story to tell. The human papilloma virus (or HPV) causes both cervical and anal cancer. But that is where the similarities end. There is a national education, screening and treatment programme for cancer of the cervix but nothing at all for anal cancer. Could this be because the latter disease is caught mainly (though by no means exclusively) by gay men?

The Department of Health argues that the incidence of anal cancer is relatively low - there were just 635 new cases in England and Wales in 2000. And it is true that lots of people with HPV never develop cancer, and even if cancer develops, it often doesn't become life threatening. But HPV has a long incubation period, similar to HIV. Infections are rocketing: according to US research, even among gay and bisexual men who are HIV-negative the infection rate is 63 per cent, and among the HIV-positive it is 93 per cent. There is a real risk of an exponential rise in anal cancer cases in 20 to 30 years' time.

Ever since I discovered in 1986 that HPV was widespread and can cause anal cancer, I have wanted, as a sexually active gay man, to get myself tested. But I can't. Despite my requests, even specialised sexually transmitted disease clinics refuse to offer screening for signs of anal malignancies. Why? If vaginal pap smears can detect cancer of the cervix, then surely pap smears can test for anal cancer? And US research suggests this is true. According to Dr Sue Goldie of the Harvard School of Public Health, anal pap smear tests are an effective screening tool; and tests every two or three years would cost roughly $16,000 for every year of life gained, against $120,000 per year of life gained from annual breast cancer screening.

From the late 1980s, I wrote to successive health ministers and medical specialists, urging the introduction of anal pap smears and the funding of research programmes. The replies were dismissive and illogical. "The science on this issue is still uncertain," was a frequent justification for doing nothing, even though it sounds to me like a good reason for further research.

Part of the problem seems to be the same puritanical squeamishness that, four decades ago, delayed action on breast and cervical cancer. One journalist told me that "anal issues are a bit too raw for our readers", and even the British Medical Journal and the Lancet have declined to carry news stories on the subject.

I had almost given up on trying to get something done until John Reid succeeded Alan Milburn as Health Secretary. With little expectation of success, given his reputation as a new Labour bruiser, I wrote to him soon after his appointment, saying: "It cannot be medically justifiable to treat people at risk of anal cancer differently from those at risk of cervical cancer."

Reid instantly referred my letter to the National Screening Committee. Within two weeks, the committee agreed that "the existing evidence should be reviewed and assessed", with a view to funding "further research". The cancer that was so stigmatised and neglected that no one dared speak its name is coming out of the closet.