Letters to the Editor
Sunday May 6, 2001
I read J.K. Rowling's article about her mother's decline and death from Multiple Sclerosis at the age of 45 (Review, last week) with great sympathy since my son suffers from the same disease.
Unlike JKR's mother, my son was diagnosed within months of the symptoms appearing - thanks to his private health insurance scheme - but in terms of health care has experienced the same neglect as her mother. In my son's case he was told: 'You have MS. Take evening primrose oil and go away and live your life.' From that moment, two years ago, any help he has received has been paid for by him.
At first we thought that treatments were not available. But they are: the National Institute for Clinical Excellence is blocking the use of beta interferon because of its cost, though the drug is readily available in European countries and is less expensive there.
Ten years on, as J.K. Rowling pointed out, nothing positive has been done by government to help sufferers from this disease, and what is available is denied them.
• I was diagnosed with MS in November 2000. This was just a few weeks after NICE had delivered their verdict that beta interferon was too expensive to be prescribed for new sufferers. Until I read Ms Rowling's article, I had thought that the bill to the NHS would run into hundreds of million pounds. I was so surprised to be told that the cost to the NHS to give the drug to all sufferers with MS who would benefit would be only £46 million.
My neurologist has agreed that I would meet the criteria for prescription of the drug if he was able to do so. There are no MS nurses in my region of Hertfordshire, and all I have received from the Department of Health is an assurance that they recognise that it is an extremely debilitating and distressing chronic disease but there is nothing that can be done for me.
MS is not life threatening for most people as it was to Ms Rowling's mother but it has absolutely wrecked my life.
Hemel Hempstead, Herts
• While having every sympathy with J.K. Rowling, I fear that association by celebrity may give some conditions a disproportionate share of sympathy and charity. My husband has recently been diagnosed with age-related macular degeneration - the major cause of blindness/low vision in the Western world. There is no treatment (except in rare situations) and no cure. Vision can be lost almost immediately or over a period of years. Early symptoms can be slight but ultimately catastrophic (a barely noticeable distortion of vision if present only in one eye, or a small black spot in the visual field).
A minority of people can have their sight saved or the onset of the disease postponed by laser treatment. In practise this is almost impossible within the NHS where it can take three months to get a first appointment with an ophthalmologist.