The Atypical HUS Foundation

Only 6 Months of Soliris for Dialysis Patients in Ontario, Canada. Let's Do Something About It!

In February, 2015, the Ontario government announced that it would provide interim funding for Soliris for aHUS patients who meet “defined clinical criteria”.  This was great news for those who were new patients with aHUS.  But those who were already sick, on dialysis, and in need of a kidney transplant had been denied funding.  And without access to Soliris, a transplanted kidney would suffer the same aHUS attack as their native kidneys.

Recently, Health Minister Dr. Eric Hoskins of Ontario announced that Soliris would finally be made available to those on dialysis and in need of a kidney transplant.  Great news, right?  Well, sort of.  The catch here is that these patients will get a maximum of 6 months of Soliris and we all know that once Soliris is stopped, the transplanted kidney may be destroyed.  These patients and their doctors are not likely to want to take the chance of triggering another aHUS attack so they are not likely to go through with a kidney transplant. 

 

There are those who have been waiting years to have a chance for a transplant.  Now they are told they can get a transplant but they can only keep this kidney for 6 months.  Makes no sense.

 

aHUS Canada will be meeting in May with the bureaucrats that work under the Health Minister and are making the decisions. Please help our Canadian friends by sending Dr. Hoskins email telling him how you feel about this.  If you have had a kidney transplant and are on Soliris, please tell Dr. Hoskins’ your story.  And if you have lost a transplanted kidney without Soliris and then had a successful transplant with Soliris, that could make a big impact on getting more than 6 months for our friends in Canada.

Here are 2 email addresses for Dr. Hoskins:

 

ehoskins.mpp@liberal.ola.org 

eric.hoskins@ontario.ca

 

You can also go to aHUS Canada’s email tool (below) and select Ontario and Dr. Hoskins.  You can send their email as is or change it to make it more personal.


http://www.ahuscanada.org/advocacy-support/petition-letter/

 

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Did you know...

CFH (Serum Complement Factor H) is a regulatory protein. The secreted protein product of CFH consists of 20 repetitive units named "short consensus repeats" or SCRs (each approximately 60 amino acids). In patients with aHUS the last 5 "pearls" in the twenty pearl strand protein, SCR16 - SCR20, should bind to protect cells but do not- they are defective in one or more of the last 5 SCR locations. If they cannot bind or stick to the kidney to protect that tissue, the platelets clump into clots that affect the glomeruli of the kidney -potentially causing acute renal failure.
  
• • • • • • • • • • • •
  
It is estimated that there are about 2 cases of aHUS in the U.S. per 1,000,000 of population, and about 60% of aHUS patients are diagnosed as children. The condition is potentially life threatening, and either can be chronic or can recur at intervals.
  
more factoids...

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