People with multiple sclerosis are paying up to £ 600 a month for a “life-changing” drug that is available on the NHS in Wales and Scotland, but not in England.
Charities estimate that tens of thousands of people with MS are getting lost fampridine, which can improve a person’s ability to walk and reduce the risk of falling.
They say the “postcode lottery” in Britain around drug access is “grossly unfair” to patients in England, who are forced to live with very debilitating symptoms of MS, which can include vision problems. , movement of arms and legs, sensation and balance.
Labor MP Dame Margaret Hodge has written to Health Secretary Sajid Javid, urging him to make sure the drug is available to anyone who needs it.
His intervention came after his constituent Steven Brooks’ walking ability markedly improved after receiving fampridine as part of a clinical trial, but whose health later deteriorated when the trial ended and his hospital was unable to provide it.
“It is grossly unfair that people with MS are denied access to fampridine, a life-changing treatment, based solely on where they live in the UK,” said Phillip Anderson, the Society’s policy director. of EM.
“MS is relentless, painful and disabling, but we know that this treatment can make a significant difference in many people’s symptoms, including helping them walk and managing MS fatigue.”
The disparity in access has arisen because the National Institute for Excellence in Health and Care (Nice), which advises the government and the NHS in England, believes that fampridine does not represent good value for money, while its equivalent bodies in Wales and Scotland have recommended it.
The MS Society estimates that around 40,000 MS patients in England who would benefit from taking the drug cannot get it due to Nice’s decision. Around 200 people have obtained it on the NHS and only after submitting an “individual funding request”, an appeal against the denial of an expensive form of treatment, and showing that they have an exceptional need.
But the society says they represent only 0.5% of those who can enjoy a boost in their ability to walk and their quality of life if they could get fampridine from the NHS.
Biogenic, which makes the drug, says an even greater number of people in England, some 65,000, could improve their health if they could get the drug, and another 3,000 in Northern Ireland.
The MS Trust said patients paid between £ 200 and £ 600 a month for the drug privately.
David Martin, chief executive of the trust, said: “In England, people with MS are forced to make difficult decisions about whether to pay for a drug that they could get for free elsewhere in the UK. We at MS Trust do not believe this is fair.
“We know that fampridine can make a difference for some people with MS who experience walking difficulties and the MS Trust would like to see fair access to this treatment across the UK.”
In his letter, Hodge asked Javid why NHS England had not been able to get a discount on the cost of the Biogen drug after the Scottish NHS agreed to a deal to guarantee its availability.
“It is not acceptable that NHS England is left behind and does not offer access to fampridine for free. This flaw has created a zip code lottery for MS patients that has severely impacted my constituent’s life. “
Nice is updating its guidance on MS treatment, which charities and patients hope will lead to the drug being free on the NHS in England. That is expected in 2022.
The Department of Health and Welfare said it sympathized with patients who were denied the drug, but backed Nice’s judgment.
“We want all patients to have access to world-class innovative medicines and to sympathize with those facing challenging conditions like multiple sclerosis,” said a spokesperson.
“Nice is known worldwide for its expertise in identifying effective treatments at a fair price to the NHS and taxpayers. They found that there is currently not enough evidence on the effectiveness of this drug compared to other effective treatments to recommend it to patients.
“We want to assure people that Nice is keeping their guidance under review. It is currently reviewing its recommendations on fampridine and hopes to publish updated guidelines next year. “