The family of a Chester teenager with a life-threatening kidney condition are desperately worried that time is running out to raise funds for a drug they believe could save their son’s life.
Last year The Chronicle reported the story of 15-year-old Matty Jones from Mollington who suffers from the extremely rare and life-threatening condition called Dense Deposit Disease (DDD) which is slowly eating away at his kidneys.
Unfortunately for Matty, conventional therapies have little effect on his condition and the NHS have no recommended treatment available, meaning it is just a waiting game before his kidneys fail and he is forced to undergo dialysis and a kidney transplant.
The only hope for Matty and his family is a drug called Eculizamab which stops one of the harmful proteins currently clogging up Matty’s kidneys, and even tests run by Alder Hey have shown the drug is the best solution for Matty.
But the drug costs £360,000 a year, and as there is no NHS policy for using it to treat DDD, Matty’s family last year started a petition addressed to Health Secretary Jeremy Hunt, asking for the NHS policy to change to allow funding for the drug they believe will save Matty’s life.
However, despite the petition collecting more than 206,000 supporters, it still needs to reach 300,000 before it can be sent to Hunt, and sadly, Matty’s condition is slowly deteriorating, and his family are desperate to put pressure on the government to change the policy before it is too late for their son.
Related : Read more about Matty's story here
Dad Nick told The Chronicle: “Matty is still fighting and doing his best to stay strong. But his blood results continue to show a deterioration in his condition though and he has to be off school a couple of days a week, making it a struggle as he is in year 10 and has GCSE’s next year.
“We are getting ever nearer to the time when Matty needs dialysis and the chance to save his kidneys will have passed. Meanwhile the NHS are moving at glacial pace. They have finally acknowledged that the treatment would be effective for Matty’s treatment but there is still no approval due to the cost.
“There is currently a draft policy going through the motions within NHS England which may approve treatment for post-transplant patients within the next few months. We are aware that the NHS is also considering going through the whole process again for pre-transplant patients but that is likely to take at least 18 months by which time it will be too late for Matty.
“So we are in the ridiculous situation where it appears that Matty’s kidneys have to fail and he has a transplant, before the NHS will take any action,” he added.
“Many people may think that a transplant is a cure but once you go on dialysis there is a 3-4 year wait for a kidney and the transplant typically last about 10 years before going back on dialysis and waiting for a second transplant,” explained Nick.
“There are many risks along the way and one in six people on dialysis die every year. At the moment it is within the NHS’s power to prevent Matty from losing his kidneys and becoming a transplant patient by giving him a drug which they recognise is effective, are currently giving to around 170 patients for another condition, and plan to give to post-transplant patients with Matty’s condition.
“They choose not to, but we will not stand by whilst this happens and we would ask for the support of anybody who is willing to sign our petition and write to their MP and/or NHS England demanding change.”
Sign Matty’s petition here: https://www.change.org/p/jeremy-hunt-approve-treatment-to-save-my-son-matty-before-it-s-too-late
