Author Hits Out At NHS Ban On Costly MS Treatment For Scots

JK Rowling yesterday condemned a decision to deny multiple sclerosis patients in Scotland access to a drug on the grounds of cost. The Harry Potter author, whose mother suffered MS, broke her silence on the Scottish Medicines Consortium’s refusal to recommend Tysabri ahead of a debate on the drug by MSPs.

Rowling said cost should not dictate the use of a drug which could help tackle a serious illness such as MS. In December, the SMC said the economic case for Tysabri – which costs £15,000 a year per patient – had not been demonstrated. The announcement prompted dismay among patients and MS campaigners.

The drug is used to treat patients who suffer an aggressive form of MS which leads to disabling relapses. The patients will have failed to respond to other treatments. Yesterday, Rowling, patron of the MS Society Scotland, added her voice to the calls for the SMC to reconsider its position.

“I know from personal experience that MS can have a devastating effect on everyone who comes into contact with it. My mother suffered terribly with MS and it was so frustrating that there was little or nothing doctors could do to help her. If a drug can help tackle MS – particularly the very aggressive type of relapsing MS we are talking about – it should not be ruled out because of cost alone.

“Once again, decisions about treatment are being made by accountants rather than clinicians, and I hope MSPs will speak up on behalf of the thousands of families affected by MS across Scotland,” Rowling said.

Tomorrow MSPs will debate the motion “that the parliament deplores the decision by the Scottish Medicines Consortium not to recommend that Tysabri be prescribed to people with multiple sclerosis”.

Mark Hazelwood, director of the MS Society Scotland, said Tysabri was an important treatment option for MS patients. “People affected by MS in Scotland should have the same access to treatments as their counterparts in Ireland, Germany, the US and elsewhere,” he said. “More that 10,000 people are now taking this drug worldwide, but we are barely out of the starting blocks.”

Dr Belinda Weller, a neurologist at the Western General in Edinburgh, said she had been disappointed by the SMC’s decision not to recommend Tysabri. It means doctors who want to use the drug for individual patients must apply to the health board for funding approval in each case.

Dr Weller said she had won approval to use Tysabri for one of her patients in Lothian, but doctors elsewhere in Scotland had been unsuccessful. “There are gains to be made in improving quality of life in MS patients by using this drug which can help keep them in better health,” Dr Weller said. “It is important that we have the option to use it.”

SNP MSP Tricia Marwick, an MS campaigner, said she had been “astonished” by the SMC’s decision. “Scotland has the highest incidence of MS in the world. If you have this level of illness you have the opportunity to become a centre of excellence in the treatment of MS,” she said. “But with Tysabri we are lagging behind other countries.”

The Scottish Executive said the SMC was independent of ministers and, while it provided advice, doctors had to make judgments for each patient.

Scotland has the highest rate of multiple sclerosis anywhere in the world. More than 10,000 people have the illness – about one in 500 people. But the reasons for the higher rate in Scotland remain unknown.

MS is the result of damage to myelin – a protective sheath surrounding the nerve fibres of the central nervous system. When this is damaged, it interferes with messages between the brain and other parts of the body. Symptoms can include fatigue, mild to severe pain, balance and sight problems and muscle stiffness.

It is thought that about 1,000 patients in Scotland with aggressive MS could benefit from Tysabri.