Foyle MP Mark Durkan has called on the Minister of Health to ‘bend the budget’ to ensure a little boy from the North West has access to a potentially life-saving new medicine.
The Sentinel recently told the story of little Callum McCorriston, a four-year-old from Limavady who suffers from a muscle wasting condition known as Duchenne Muscular Dystrophy. The condition, which is incurable, will cause a steady deterioration of the little boy’s muscles, meaning he will likely be wheelchair bound by the time he attends secondary school and is unlikely to live beyond his twenties.
Despite a breakthrough new drug offering the first effective treatment, his mother Laura is concerned he will miss out on the drug even if - as expected - it is approved for use on the NHS.
Laura said that even if the drug is available in England, there is no guarantee it will be available here. On Monday, she took her campaign for better treatment to Stormont.
There, Laura was given an assurance from Dean Sullivan, director of commissioning of services for the health and social care board, that the drug would be made available as long as it was found to be ‘cost effective’.
Foyle MP Mark Durkan, however, believes the Minister of Health and the department should ‘bend’ the budget to accommodate the little Limavady boy and others who may benefit from the new drug.
Mark Durkan said: “I’ve been a member of the all party parliamentary group at Westminster on muscular dystrophy for a number of years now. The group has held a number of meetings into the whole question around screening at birth and the issue of the structuring of services.
“The availability of medicines will need to be looked at. In terms of specialist drugs that can make a condition specific impact, clearly the Minister and the Department here should be bending their budget to make that available.”
Callum McCorriston’s mother, Laura, attended the event at Stormont on Monday, which looked into the general standard of care for those suffering with muscular dystrophy in Northern Ireland.
Foyle MP Mark Durkan has been a member of a parliamentary group calling for better care standards across the UK for some time.
He said: “In terms of the issues in Northern Ireland, the arguments that are being made in general are similar to the issues that are being raised at Westminster. In terms of the need for centres of excellence, they should be available within two hours of home.
“That is the model to be aimed at. In England there are two centres of excellence - in Newcastle and Great Ormond Street so there is obviously a gap there and there is quite a big gap here.
“When you look at what has happened in other countries, when you look at the systems in other countries, you learn quite a lot. There is sometimes the attitude that there isn’t a lot that can be done other than providing equipment. The experience elsewhere shows that with earlier diagnosis, better treatment and support, people live longer lives and - importantly - fuller lives.
“When people speak about better treatment in Denmark, that begs the question ‘why not here?’ If you look at the Duchenne population in a given lace and ask how old people are living, the fact is that in Denmark the percentage of the population aged over 21 is 51 per cent. In Scotland, it is measured by the number of people aged over 18 and the figure there is 35 per cent. In Northern Ireland it is just 21 per cent aged over 19 years old. That shows that people elsewhere with the same condition are living longer.
“If you take echocardiography and lung function assessments, that really varies. While there are no figures for Northern Ireland specifically that I am aware of, the charity Action Duchenne are able to say that in the UK in general, for those aged 18 and above, over 35 per cent don’t receive annual echocardiography.
“Similarly, for lung capacity assessments, annually 27 per cent don’t see a specialist neuromuscular clinicians on a yearly basis. That compares to four per cent of children. With that differential between adult and pediatric care what you essentially have is a system geared towards the presumption that people aren’t going to live that long. That is a whole issue, the transition of care from child to adult.”
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