David McNiven: We can't afford to gamble on access to drugs lottery

Imagine living with a disabling neurological condition such as multiple sclerosis (MS). There is currently no cure, symptoms are varied, unpredictable and can be severe. They include balance difficulties, blurred or double vision, numbness, bladder problems, tremor, stiffness or spasms in muscles and many more besides. When a new treatment comes along that can help relieve one of those symptoms, people living with MS will understandably rejoice.

Too often that joy will be short-lived, however, as the development of a treatment is one thing but gaining access to it can be something else altogether. That is the case with Sativex, a cannabis-based oral spray that can treat muscle spasms - sometimes called spasticity - in people with MS.

Sativex was given approval last year by the Medicines and Healthcare products Regulatory Agency, which means it is judged to be safe and effective. It still needs to be considered by other bodies such as the Scottish Medicines Consortium (SMC) before there is any chance of it becoming widely available across health boards in Scotland. A decision by the SMC on Sativex is likely to be delayed as the manufacturer has yet to make a formal application for approval.

Delays are frustrating for patients and clinicians when they know that a treatment exists which can be beneficial. At the MS Society we have been gathering information over recent months for our own Patient Interest Submission to the SMC on Sativex. One of the particularly attractive features of Sativex is that it can be taken orally and so is very easy for people to use. It is crucial that when Sativex is considered by the SMC the full benefits to patients are weighed against the cost of providing this treatment.

The sad fact is that people living with MS are used to frustration and disappointment when it comes to trying to access treatments. A government report released in 2010 revealed UK prescribing levels for MS drugs to be among the very lowest, with the UK ranked 13 out of 14 developed countries for the use of MS drugs.

Access is also notoriously a postcode lottery, with different decisions being made by health boards in different parts of the country. Geographical inconsistencies are a real frustration to patients who wonder why they cannot receive a treatment that is available to someone living with the same symptoms in another area.

People with MS deserve better and should have access to proven treatments, no matter where they live. If this does not happen then the consequences can be far worse than mere dashed hopes.

Debbie Purdy, who has campaigned on MS issues over many years, will today address MPs at Westminster on the impact of poor access to MS medicines. Debbie argues that the denial of treatments to individuals not only reduces their quality of life but can also potentially drive people to suicide. Such occurrences are mercifully quite rare but it is important that all involved in the process of approving funding for treatments understand just how high the stakes can be.

It is fully understood by the MS Society and our members that decisions on treatments have to be taken in a financial environment that is currently very challenging. We know that treatments cost money and every penny of public spending is attracting scrutiny.

Not treating people costs money, too, though. People with MS have a right to a full life and supporting them to achieve that is not only the right thing to do but can be economically beneficial, if people are able to stay in employment longer, for example.

The clinical trials involving Sativex have been encouraging. In one study, 74 per cent of those continuing treatment achieved an improvement in their spasticity score of more than 30 per cent. These figures represent a real difference to people's lives. That can be as simple as a night of uninterrupted sleep and we all know what a difference that can make, even more so if you are living with the effects of multiple sclerosis.

As we approach the elections to the Scottish Parliament in May, we will no doubt hear much talk on the campaign trail of postcode lotteries and the need to tackle them. MS care and treatment is too much of a lottery right now and more and more people are making their voices heard to say enough is enough.

For all the challenges that people with MS face, the very existence of treatments such as Sativex highlight that these are exciting times in terms of breakthroughs and the development of medicines. That excitement will only bring real hope and benefit if people can access those treatments. As a society, we must make sure that they can.

David McNiven is director of MS Society Scotland

KNOWING THE FACTS

More than 100,000 people in the UK have multiple sclerosis (MS)

More women than men are diagnosed with MS

Multiple sclerosis is not inherited, but family members do have a slightly higher risk of developing MS

It is usually diagnosed when people are in their 20s and 30s

MS is a disease affecting the central nervous system (the brain and spinal cord)

Symptoms can come and go and can vary greatly in terms of severity

MS is not a fatal condition

Most people diagnosed with MS will not need to use a wheelchair on a regular basis

At present, there is no cure for MS, but this certainly doesn't mean that the symptoms of MS cannot be treated