Drug-funding changes ‘could hinder people with rare diseases’
Tuesday 03 September 2013
Patients with rare diseases could be denied access to cutting-edge therapies because of changes to the way drugs are funded, MPs have warned.
The All-Party Parliamentary Group for Muscular Dystrophy raised concerns that money previously earmarked for rare-disease medication has been merged into the overall budget for NHS services in England.
They said this could mean expensive therapies for rare conditions will be forced to compete for funds against medications for common conditions such as diabetes or heart disease.
The group called on the Government to establish a ring-fenced fund for rare-disease drugs to ensure people have access to pioneering treatments.
The report also called for health regulator the National Institute for Health and Care Excellence to assess treatments for rare conditions differently from common ones.
They said health officials should also speed up access to drugs following the conclusion of clinical trials.
Labour MP Dave Anderson, who led the inquiry, said: “We have seen that successfully developing an effective treatment is far from the end, with agonising waits for some families through licensing and funding issues.
“We must focus on ensuring that if treatments are proven to be safe and effective, the UK is in a position to license and deliver them swiftly.
“We urge regulators and commissioners to overcome these obstacles and find a feasible, sustainable way of delivering pioneering rare-disease treatments. Otherwise the effective treatments may remain entirely out of patients’ reach.”
A Department of Health spokeswoman said: “Saving more lives by making sure people are diagnosed sooner and get the right treatment is one of our key priorities.
“NHS patients with rare diseases already receive some of the best levels of care in the world, but we are committed to improving this further. That is why we are working closely with other health departments and stakeholders to develop a UK strategy for rare diseases. This will be published by the end of the year.”
Life & Style blogs
Alexander McQueen at auction: What makes a really great piece of fashion?
A bottle of wine a day is not bad for you and abstaining is worse than drinking, scientist claims
No female ejaculation, please, we’re British: a history of porn and censorship
Stressed nurses are 'forced to choose between health of patients and their own'
Pornhub: Kim Kardashian's sex tape is the most-watched porn video of all-time
- 1 Nigel Farage: Me vs Russell Brand on Question Time – he's got the chest hair but where are his ideas?
- 2 Harry Potter fans can apply to the Hogwarts-inspired College of Wizardry
- 3 Jessica Chambers: 19-year-old woman 'doused with lighter fluid and burned alive' in the US
- 4 Russell Brand calls Nigel Farage 'poundshop Enoch Powell' in BBC Question Time debate
- 5 Orange Wednesdays are no more
Negotiable: Recruitment Genius: This is an opportunity to join the UK's Frozen...
£20000 - £25000 per annum: Recruitment Genius: An exciting position has risen ...
£20000 - £25000 per annum + benefits: Ashdown Group: Internal Sales Executive ...
£28000 per annum: Recruitment Genius: This company specialises in the installa...