MP URGES MINISTER TO PUSH FOR DRUG
‘Decision needs to be made’ over medicine to combat muscle-wasting
CHESHAM and Amersham MP Cheryl Gillan has urged health minister George Freeman MP to push NHS England for a positive decision over muscular dystrophy drug Translarna.
However, Mr Freeman said that while he has requested the decision to be ‘expedited’, he is limited to what he can do.
Mrs Gillan used a Commons debate to throw her weight behind a campaign to make lifetransforming medical care available for people with muscle-wasting conditions.
The campaign heavily involves one of her constituents, 10-year-old Archie Hill, from Gerrards Cross.
from Duchenne muscular dystrophy and, along with his family, has been battling to gain access to Translarna.
His campaigning has involved, among others, delivering a letter to the Prime Minister with Mrs Gillan appealing for fast access to the drug.
The genetic therapy is the first available in the EU for Archie’s condition and could help keep him walking for longer.
But the Hills have waited more than a year for a decision on NHS funding for the drug.
Mrs Gillan also called for guidelines for healthcare professionals on supporting the 70,000 people in the UK with muscle-wasting conditions, to make sure they do not miss out on life-transforming care.
During the debate she said: “Archie has great stamina and he has spent whole days here campaigning, marching up to Downing Street and telling the prime minister what he wants and what the prime minister should do about it. Quite frankly, he is one of the pluckiest little spirits that I have ever met in my life.
“For the Hill family and Archie, and for all the other children and their parents at this time of year, if the Minister could ask NICE (the National Institute for Health and Clinical Excellence) to bring forward a positive decision on Translarna, it would be the best Christmas present any parent or child could get.”
Mr Freeman said: “[Mrs Gillan] is a tenacious advocate on this issue, as on others. I join her in paying tribute to Archie and his family. I have met patients who suffer from these diseases and their families, and one’s heart goes out to them. One wants to pay tribute to the bravery with which they deal with their conditions.
“I have requested that the Translarna decision, which I believe is due in February, is similarly expedited. However, again, that is not in my gift, and while during the year the prime minister and I have urged NICE and NHS England to do everything they can to expedite their decision making on those drugs.”
Nic Bungay, director of campaigns, care and information for Muscular Dystrophy UK, said: “We are very grateful to Cheryl for speaking out in Parliament on behalf of Archie and the thousands of families living with muscle-wasting conditions.
“The Hills have endured a year-long wait for news about NHS funding of Translarna. This is unacceptable. The health minister must act and also ensure other breakthrough drugs for Duchenne muscular dystrophy and other conditions are not plagued by similar delays.
“It is vital that every child and adult has access to the right care and support, wherever they live. We would like to thank Cheryl for reminding the Minister that this is why guidelines for muscle-wasting conditions must be in place.”
Lobbying: Archie Hill meets David Cameron in appeal over drug