Government takes more than year to respond to innovative medicines review

The Government has taken more than a year to respond to a review outlining how to speed up NHS patients’ access to innovative medicines, a charity has said.

Muscular Dystrophy UK said that the Accelerated Access Review should be dubbed the “Delayed Access Review”.

The Government-commissioned review – which made recommendations on how to speed up access for NHS patients to innovative medicines and other products – was published on October 24, 2016.

But ministers are yet to formally respond to the proposals, the charity said.

A Department of Health spokeswoman said a response was expected in the next couple of weeks.

The review said the UK sometimes “lags behind” other countries when it comes to providing life-changing innovations to patients as soon as they are available.

The report said patients could have medication four years sooner if processes within the NHS were streamlined.

It made a series of suggestions including the creation of an accelerated access partnership to speed up and simplify the process for getting the most promising new treatments and diagnostics safely from pre-clinical development to patients.

Last year the Government said it would consider the proposals and “respond more fully in due course”.

But Muscular Dystrophy UK, which has been campaigning for the faster approval and funding for therapies for muscle-wasting treatments, said that families have told the charity of their frustration over their year-long wait for action.

The charity said there are very few treatments and no cures available for muscle-wasting conditions.

Claire Liggett, whose eight-year-old son Charlie Anderson (pictured) has the life-limiting condition Duchenne muscular dystrophy, is waiting on a decision over the drug Exondys 51, which could effectively slow down the progression of the condition, the charity said.

Ms Liggett, from Hythe in the New Forest, said: “Time is so precious for boys like Charlie that a year’s delay is unfathomable to us.

“Charlie will need to use a wheelchair within a few years. His life-expectancy is in his early thirties. However, we know that new drugs are near, drugs that could be life-changing for Charlie.

“But we are scared that treatments that could make a difference won’t be made available in time because of bureaucratic delays. We need the Government to implement these plans now.”

Robert Meadowcroft, chief executive of Muscular Dystrophy UK, said: “A full year after publication, the Accelerated Access Review could now be dubbed the Delayed Access Review, such is the lack of urgency in the Government’s response.

“Yet the need to act upon this report cannot be overstated. Our drug approval system is simply not ready for the substantial increase in the number of groundbreaking therapies for genetic conditions that need assessing.

“The review provides cost-effective and practical answers to many of the problems we face. We know that for every parent every day counts as they watch their child weaken with a progressive condition.

“The Government has been given a blueprint for change and now needs to put it into action.”

A Department of Health spokesman added: “This Government is committed to ensuring patients have timely access to new treatments, that’s why we’ve already committed £86m of funding in response to the Accelerated Access Review and through our Early Access to Medicines Scheme we are giving patients with life threatening or seriously debilitating conditions access to medicines that do not yet have a marketing authorisation.”

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