Medical information from our Friends at aHUS5th October 2013
HUSH and its members have been very supportive of our efforts to persuade NHS England to provide the drug eculizumab to those aHUS patients who need it. Our petitions etc have just recently brought about an interim policy by NHS England to make eculizumab available, not just to those new onset to prevent acute kidney injury, but also to those on dialysis who need it to support a transplant.
There is an overlap between HUSH and aHUSUK ,and indeed the TTP patient organisation, because the immune response kicks off the same mechanism of our illnesses. This was brought home recently when a patient who had been diagnosed with HUS last year had another very serious episode when undergoing a transplant. As it was clearly now an aHUS diagnosis , eculizumab ( now funded) was administered to save her life and the kidney graft.
aHUSUK has heard of other HUS transplant incidents like this during the past twelve months but in some cases eculizumab was not given because it was not funded.
Patients predisposed to aHUS can have an episode of HUS triggered by e coli. The presence of e coli does not rule out a diagnosis of aHUS, but patients need to be screened for known predisposing genetic mutations. Even if the tests are negative ,as it is in 40% of cases, it does not rule out aHUS as there may be an unknown genetic mutation involved.
We have also come across aHUS patients who have been told they have HUS despite their history of several failed transplants and an on set during pregnancy. They are being denied further transplants despite the availability of eculizumab. I have even seen it written in a transplant centre's "advice to patients" that some patients may not be suitable for transplant and giving HUS as the example.
If there are HUSH members who are either :
- facing a transplant with a diagnosis of typical HUS but who have concerns that they may be atypical HUS & or
- being denied a transplant because of their HUS
then they ought to be asking their renal consultants about the possibility of them having the atypical form of HUS as their transplant may need to be supported by eculizumab. The cost of a genetic test is much less than it was and substantially less than a failed transplant.
If any HUSH member would like to talk about it, they can contact us through our website. www.ahusuk.org .
Finally we would like to thank HUSH and its members for their support to our cause , We still have to go through the NICE hoop in December, but we believe that aHUS patients will soon be assured of a sustained and effective treatment.
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