How quickly people can access NHS treatments for a muscle wasting condition will be investigated by a North East MP who has lost family members to the disease.
Blaydon MP Dave Anderson, who lost his brother, sister, nephew and two nieces to Duchenne Muscular Dystrophy will take part in a Government review of the health service offer.
He said: “Each day makes a huge difference for families affected by muscle-wasting conditions, many of which are life-limiting. Families are waiting desperately for a potential drug that could treat their condition.”
It is hoped a drug which can slow the advance of the disease can be made available.
Mr Anderson said the drug would have made a huge difference to his family.
His brother Bill died age 48, his sister Joy at 53, his nieces Jackie and Joanne were 43 and 40 and his nephew Ian was just 19.
Mr Anderson added: “NHS England will soon announce its assessment of a treatment which could keep boys with Duchenne muscular dystrophy on their feet for longer and which will help delay the progression of this devastating condition.
“If NHS England refuses to fund this innovative drug then the announcement will mean very little. Ministers must determine how to fund treatments for rare diseases.
“Due to the small number of patients who would benefit, treatment costs are often much higher compared to more common conditions. Muscular dystrophy campaigners and myself are concerned that a lack of ring-fenced funding within the NHS for rare disease drugs could prevent treatments from reaching patients.
“I hope that fast access to a treatment is at the heart of this review.”
Robert Meadowcroft, Chief Executive of the Muscular Dystrophy Campaign, said: “We welcome the Government’s commitment to review how access to treatments can be sped up.”
Minister for Life Sciences, George Freeman MP, said: “I fully appreciate the urgency facing families in waiting for a treatment to reach their child. As Minister for Life Sciences, I am committed to helping speed up access to potential treatments for families.
“I would like to pay tribute to the Muscular Dystrophy Campaign for the invaluable work they do in pressing for faster access to potential treatments.”