Rilutek should be subsidised.

Many years ago as a student nurse, I met two people with motor neurone disease (MND) and I was impressed by the gravity of their situation. There is no known cause of the disease and there was only symptomatic treatment. I was also very impressed with the courage and stoicism they showed in facing their bleak futures. Not much has changed in the last 40 years and people with MND still do not know the cause of their illness and they still face a grim future. However, a lot of research is being conducted worldwide and there are some glimmers of hope on the horizon. White stem cell research is the area that might produce a real change in the management of MND, the short-term outlook lies in pharmaceutical support. The hope of people who live with MND is that drugs that act as neurone protectors may slow the rate of progression and thus enable them to take advantage of any major breakthrough when it occurs.

The Motor Neurone Disease Association of New Zealand, of which I am the Wellington president, believes the drug Rilutek (Riluzole) has a significant role. In 15 Organisation for Economic Cooperation and Development (OECD) countries, including Canada, United Kingdom and Australia, Rilutek is available on subsidy. In Ireland, where people are of a similar racial stock and have demographic data similar to our own, any person with a provisional diagnosis of MND is referred to a single national clinic and started on Rilutek immediately, to give them maximum advantage at the earliest possible stage.

In New Zealand, Rilutek is not available on subsidy and many neurologists do not even discuss the drug and do not offer it as an option at the time of diagnosis. The reasons are unclear. Some doctors say the drug is too expensive, currently $660 a month. To confront people with this choice can put the family in an embarrassing dilemma for what several doctors have expressed as "little significant gain".

This response is difficult for people living with MND to understand. Many patients are in contact with each other by email and there is much discussion about Rilutek among them. Several people are taking it and, presumably, paying the high cost themselves. Patients and families make these kinds of choices every day.

Those of us caring for people with MND would like doctors to tell people with MND about Rilutek at the time of diagnosis. They should also tell them it has no known side effects, that it has a neurone-protective function, and yes, the cost, so they can decide for themselves.

Caregivers would also like to see the Ministry of Health direct Pharmac to make Rilutek available on subsidy with immediate effect. This would give some encouragement to the approximately 150 people with MND in New Zealand and to those who care for them. How many other fatal diseases are there, for which a life-extending drug exists and that drug is not on subsidy in New Zealand?

Wendy Smith, Wellington president, Motor Neurone Disease Association of New Zealand