Joan Smith: A fashionable cause it may be, but for sufferers it's hell on earth

Ann Marie Rogers is taking responsibility for her own health

Breast cancer is a fashionable cause, with lots of celebrities signing up to the fight against the disease. So why do women with breast cancer continue to be treated so shabbily in this country where the absence of a national policy has once again been cruelly exposed?

Last week, Ann Marie Rogers, 54, lost her legal attempt to get the NHS to pay for Herceptin, a new drug shown in clinical trials to double the survival chances of patients who, like herself, are in the early stage of the aggressive HER-2 form of the disease.

Unfortunately for Ms Rogers, Herceptin has been licensed only for use in late-stage HER-2 tumours. She has appealed against the decision, and Swindon primary care trust has been ordered to observe an interim order to pay for her treatment until the case is heard.

All Ms Rogers is doing is following health managers' advice to take more responsibility for our health. These days we're supposed to make sure we're not overweight, which adversely affects such procedures as hip replacements, and drink only in moderation. Ms Rogers has taken this to its logical conclusion, doing her homework and concluding quite reasonably that Herceptin might save her life.

While it is undeniably expensive - at £26,000 for a course - it's hard to see why she should be denied it any more than healthy young men who become paraplegic after taking part in risky sports should be refused costly life-long care by the NHS.

During last week's high court hearing, the judge acknowledged that many health authorities and trusts are already funding treatment with Herceptin for all eligible women. "Some may criticise the present state of affairs as a postcode lottery," he said. "Others will defend the principle of local autonomy in decision-making." I doubt many women in the early stage of the HER-2 breast cancer will fall into the latter category.

We are talking about a form of the disease that affects only about 20 per cent of patients; nobody is arguing that every woman with breast cancer should be prescribed Herceptin on the NHS. But it seems inconsistent and cruel that women who would benefit from the drug should be denied it until they are in the late stage of the disease, perpetuating a situation in which treatment is influenced by geography and other non-clinical considerations. In 1999, for example, women with early breast cancer in Yorkshire were much more likely to undergo a mastectomy than patients in Wessex.

In 2002, the New England Journal of Medicine published research that exploded the untested assumption that mastectomy is the safest form of treatment in most breast cancer cases. Doctors had worked on this assumption for almost a century but a 20-year study by Italian and American scientists contradicted it.

"The long-term survival rate among women who undergo breast-conserving surgery is the same as that among women who undergo radical surgery," they concluded, suggesting that thousands (perhaps millions) of women had undergone unnecessary mastectomies.

Swindon primary care trust said it did not take treatment decisions lightly. But that is not the point. Women with breast cancer have always had a bad deal from the health establishment, being offered or denied treatment on grounds of cost, geography and consultants' preferences as much as good clinical practice. Herceptin is expected to be licensed for early-stage breast cancer by July. In the meantime, I don't think Ms Rogers can be blamed for assuming that doctor doesn't always know best.