Sixty percent of patients with multiple sclerosis in the UK are not receiving a disease modifying drug for their condition, despite being eligible for treatment, a new survey by the MS Society has revealed.

Its report, A lottery of treatment and care: MS services across the UK, has revealed "major disparities" across the country in access to MS medicines, as well as management of the disease and support for patients. 

The survey - which, with more than 10,500 respondents, is the largest ever undertaken in people with MS in the country - showed huge variation in access to disease modifying treatment (DMT) across the country, with MS patients in Northern Ireland (68%) twice as likely to be taking one than those in Wales (30%).

In addition, just 2% of patients were found to be using one of the two licensed symptom management treatments, the report said.

The findings are particularly worrying given that early use of DMT has been recommended by the National Institute for Health and Clinical Excellence to help reduce relapses and slow disability, and again highlight the postcode lottery of care across the country that is evident in many therapeutic areas.

For example, based on NICE estimates, more than 500 people with relapsing remitting MS who took part in the MS Society's research could be benefiting from treatment with Novartis' Gilenya (fingolimod), but just 25 people - or 5% - who are eligible for this treatment were receiving it.

Similarly, of the 689 patients who met the criteria for treatment with Elan's Tysabri (natalizumab) in the survey, just 203, or 29%, were taking it.

“Our survey findings worryingly suggest that the likelihood of someone receiving a life changing treatment or service is often based on luck - like where they live or how helpful their healthcare professional is – rather than their genuine clinical need,” said Nick Rijke, Director for Policy & Research at the charity.

With regard to MS drug prescription rates, the UK ranks 25th out of 27 European countries, with only Poland and Romania coming behind. "Given the relative wealth of the UK this is simply unacceptable," he stressed.

New campaign

Alongside the report the charity is launching its Stop the MS lottery campaign, which calls for fair access to treatments and serve for all MS patients, regardless of where they live in the UK.

Among several recommendations to improve the picture of care across the country, it has called on UK governments to ensure that every MS patient has a personalised treatment and support plan, with two reviews every year.

The report also calls for integrated commissioning, so that co-ordinated, multi-disciplinary care becomes a reality, and it stressed that local health authorities must avoid blanket bans on approved medicines and made recommendations on a case-by-case basis.