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Positive funding decision for eculizumab

The British Kidney Patient Association welcomes today’s announcement from NHS England that funding is finally being granted for the use of eculizumab in the rare condition known as C3 glomerulopathy following a kidney transplant. It is vital that we maximize the success of every single kidney transplant as there are still not enough donated kidneys to allow everyone who needs a transplant to have one. Tragically, some people die whilst they are on the waiting list.

Fiona Loud, Policy Director of the charity, said: "Some patients have been waiting for this decision for some considerable time in order to determine whether or not they will be able to go ahead with a kidney transplant. So whilst we are pleased with this decision, we are disappointed that it has taken two years, leaving patients in an uncertain situation. The longer people wait for a transplant, the less likely they are to have a good outcome."

Abi Longfellow is one such patient who has been waiting for a decision on this drug so she can have a kidney transplant and whose family took legal advice to try to secure funding. Today her parents, Jo and Andy said: “We are sad that we have had to take legal advice to argue for the treatment Abi needed and that it has taken so long for a decision from NHS England.

We are however extremely pleased and grateful that steps will be taken to move Abi forward for a kidney transplant and the drug treatment needed to save her life. Now another journey has really just begun as we wait for a suitable donor.

Today, the difference is in the knowledge that we finally have funding for the only treatment currently available to keep the precious gift of a transplanted kidney alive. Today we have hope.”

The British Kidney Patient Association, who supported Abi in her fight to secure funding, believes it is vital that we understand more about these rare conditions so that further treatments can be developed. We have contributed funding towards the establishment of a rare disease registry dedicated to kidney diseases. Called RADAR, this is the first ever database of its kind.

Rare forms of kidney disease affect approximately 12% of kidney patients. We believe that it is essential that people thus affected should be able to receive effective treatment where it is available and that this should not be deprioritised because their condition is rare. Some of these groups are very small indeed, with just one or two people, and for some there is no treatment other than dialysis or transplantation as the conditions inevitably lead to kidney failure.

The full story is on the NHS website

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