THE Joining Jack charity has today welcomed a new scheme which will improve the speed at which new treatment can be accessed.
Patients with severe illnesses would be able to obtain a number of promising medicines much quicker.
The Medicines and Healthcare Products Regulatory Agency (MHRA) will oversee the scheme when it is officially launched next month. It means drugs could become readily available between two to 10 years earlier than normal, a huge boost to families such as Jack Johnson’s.
The six-year-old is the inspiration behind Joining Jack which is researching for a cure into Duchenne muscular dystrophy, an illness with which he was diagnosed in 2011.
His parents Andy and Alex, who set up the charity, have welcomed the news after working tirelessly to help bring about the change.
“It’s something that a lot of medical research charities have been calling for for a long time,” said Alex. “I got involved with Empower (a campaign for faster action to drugs) about 18 months ago and we’ve campaigning for early access to medicine with them. It’s huge news for us. We have been busy raising funds for research and we’ve announced projects we are funding and we will announce another one shortly.
“As you learn more about the drug development process, you begin to worry that we could get a therapy and we wouldn’t be able to access it because the regulation is still strict and if Jack doesn’t get on the clinical trial or gets selected on the placebo arm of the trial, we could 10 to 15 years away from him getting a drug.”
The MHRA has stressed that the early access scheme would not replace the system of bringing drugs to market via clinical trials.
For unlicensed drugs to be used under the new scheme, sufficient data from several years of clinical trials would be needed to show that it looks like a promising and innovative treatment. And safety is still of paramount importance.
Alex added: “It’s probably the biggest breakthrough. It’s a major one, not just for Duchenne but for anybody who suffers from a life-limiting condition.”