Around 8000 Scots with multiple sclerosis are being denied access to a drug that cuts the risk of disabling relapses by as much as 50%, it has been claimed.
The warning from campaigners came after the Scottish Medicines Consortium (SMC), which is responsible for approving newly-licensed drugs, rejected fingolimod for the treatment of NHS patients with relapsing-remitting MS – the most common form of the condition.
It said the daily pill, which replaces injections for sufferers, does not offer value for money for the health service.
Clinical trials have found it is twice as likely to prevent relapses compared to beta-interferon, the most commonly prescribed MS drug available on the NHS.
However, MS Society Scotland said the decision would "leave some people with no effective treatment option".
Director Patricia Gordon said: "Access to MS treatments in the UK is very poor and our hope is that the SMC and Novartis [the drug's manufacturer] can work together to make this treatment available to the people who need it. We will continue to campaign for improved access to treatments for all people with MS."
Neurologist Dr Belinda Weller, of the Western General in Edinburgh, the principal investigator for the Scottish branch of the trial, said: "I want to have the best options for my patients and there is a huge unmet need for an oral form of medication. Seven of the eight patients in the Edinburgh trial were very enthusiastic about its effects."
Fingolimod is widely available in Europe, the US and Canada, with the National Institute for Health and Clinical Excellence (Nice) due to issue its guidance on the drug to the NHS south of the Border this week.
Scotland has one of the highest rates of MS in the world, thought to be due to a combination of genetic factors and vitamin D deficiencies.
MS sufferer Claire MacRae, 35, has been taking fingolimod as part of the clinical trial since January 2011, after suffering a disabling relapse in October 2010 while on another drug. Ms MacRae, of Uphall, West Lothian, said she would consider moving to the US to get the treatment after her trial finishes.
"I've never relapsed since I've been on it, and it's been so much better taking a daily tablet instead of the horrible weekly injections with beta-interferon," said Ms MacRae. "It's stabilised everything. I still have the numbness in my legs, and vision problems in my left eye, but there's been no new damage. I'm scared I'll have to go back to using a less effective drug and then I'll suffer more relapses and be even more disabled."
Ms MacRae was a keen snowboarder when she was diagnosed in 2007 and now uses a walking stick. She quit her job 18 months ago.
Novartis is seeking clarification from the SMC about its ruling. A spokeswoman said it intended to submit further evidence about its effectiveness "as soon as possible".
The SMC said in addition to the value for money aspect of the drug, its trials did not compare it against natalizumab – another MS drug commonly used in Scotland.
A spokesman added: "We look forward to receiving new information when the manufacturer is able to provide it.
"In the meantime, all NHS boards in Scotland have systems in place to review individual requests for this medicine from any clinician who thinks that ... its use is appropriate for their patient."
Why are you making commenting on The Herald only available to subscribers?
It should have been a safe space for informed debate, somewhere for readers to discuss issues around the biggest stories of the day, but all too often the below the line comments on most websites have become bogged down by off-topic discussions and abuse.
heraldscotland.com is tackling this problem by allowing only subscribers to comment.
We are doing this to improve the experience for our loyal readers and we believe it will reduce the ability of trolls and troublemakers, who occasionally find their way onto our site, to abuse our journalists and readers. We also hope it will help the comments section fulfil its promise as a part of Scotland's conversation with itself.
We are lucky at The Herald. We are read by an informed, educated readership who can add their knowledge and insights to our stories.
That is invaluable.
We are making the subscriber-only change to support our valued readers, who tell us they don't want the site cluttered up with irrelevant comments, untruths and abuse.
In the past, the journalist’s job was to collect and distribute information to the audience. Technology means that readers can shape a discussion. We look forward to hearing from you on heraldscotland.com
Comments & Moderation
Readers’ comments: You are personally liable for the content of any comments you upload to this website, so please act responsibly. We do not pre-moderate or monitor readers’ comments appearing on our websites, but we do post-moderate in response to complaints we receive or otherwise when a potential problem comes to our attention. You can make a complaint by using the ‘report this post’ link . We may then apply our discretion under the user terms to amend or delete comments.
Post moderation is undertaken full-time 9am-6pm on weekdays, and on a part-time basis outwith those hours.
Read the rules hereComments are closed on this article