"What this drug has bought us is time, time for my family and time for science to come up with the cure for this cruel disease." Jean Skasick, 48, has multiple sclerosis but considers herself one of the luckier ones because she has been receiving weekly injections of beta-interferon since July.
The battle to get the drug has dominated the lives of Jean and her husband Jim for more than a year. They launched an appeal to raise funds to pay for it, and, from their home in south-west London, they bombarded everyone they thought could help, from Virginia Bottomley, then Secretary of State for Health, to officials at their local health authority, demanding to know why Jean could not have a drug which might slow the progress of the increasing disability which is characteristic of MS.
She talked of being repeatedly "stone-walled and fobbed off", of ignored letters and phone calls that were never returned, of doctors who said they would prescribe it and then changed their minds. "It was all about money," Mrs Skasick said. "They just didn't want to pay for something that might help me, and yet it was going to cost less than pounds 10,000 a year."
Jean Skasick was under no illusions about beta-interferon. She knew that it would not cure her MS and she knew that British neurologists were more cautious than their American colleagues who had hailed the drug as a "breakthrough". But she felt there was no alternative treatment for her.
Mrs Skasick was unable to take steroid drugs, the only routine MS therapy that offers some relief to sufferers, because she suffered from osteoporosis. She knew that at least 20 people in the UK were already taking beta-interferon, paid for by health authorities or trust hospitals. Another 15 were paying for it themselves. "This was all so unfair," she said.
It was only after Mrs Skasick's story appeared in the Independent earlier this year that the Merton, Sutton and Wandsworth Health Authority relented, and said that if she found a neurologist to prescribe the drug, the authority would fund it. Two months into her treatment Mrs Skasick has found no discernible improvement in her condition.
But she said: "This is a long-term treatment. All I my family and I are hoping is that will slow the disability.
"It has given me the prospect of a future. If other people don't get this drug they are being victimised. For years we've cost the NHS nothing - because there was nothing you could do for MS. It must be our turn now."Reuse content