The Atypical HUS Foundation

Shocking!!! Just 6 Months of Soliris for Our Friends in Ontario, Canada on Dialysis!!! Use Your Facebook Skills to Help!

Recently, Health Minister Dr. Eric Hoskins of Ontario, Canada announced that Soliris would finally be made available to those on dialysis and in need of a kidney transplant.  This would be good news except 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. 


Please help our Canadian friends by going to Dr. Hoskin’s Facebook page and posting your views on this and making comments on his posts   If enough of us do this on a regular basis (every time you log onto Facebook would be awesome!) we can make a difference.


Today I posted on Dr. Hoskin’s page one of the emails I sent him. 


Tomorrow I might just post, “Please Dr. Hoskin’s, make Soliris available to dialysis patients with aHUS for longer than 6 months.” 


Or if he posts something about making some other drug available I might comment, “That is great that you are making this drug available.  But don’t forget about those on dialysis with aHUS who will need Soliris for longer than 6 months.  This is a chronic disease and there is no cure.  Just a treatment.  After 6 months when the Soliris is stopped, that kidney will be destroyed.”


Here is Dr. Eric Hoskin’s Facebook page.  Please join me in putting the pressure on.


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Comment by Len Woodward on May 31, 2016 at 2:27am
Protocols are different in different countries . Not all aHUS transplant patients need eculizumab and not all need it continuously . Using the best advice they could at least get started. Are they doing so. The others should be the long term focus is the 6 months a review period that is not unusual or is it a withdraw and see, a risky protocol if the clinician is not taking cognisance of the pre disposing genetic circumstances .
The price of the drug is the sticking point and some move in that direction is needed too.Canada Health has said in public what it is looking for, not the highest not the lowest, although something like Medicaid price would be a position to suggest.
Comment by Jeff Schmidt on May 26, 2016 at 7:38am

Well said Cheryl.  Thank you for your help once again.  I will soon be making a big push for our Australian friends who's dialysis patients don't even get 6 months.  They get nothing!

Comment by Cheryl Biermann on May 25, 2016 at 10:04pm

We all should try and help.  Six months!  Most patients would be severely compromised if their treatment is removed.  All Nathan had to do was grow and everything went haywire until the dose was increased.  Can you imagine going through all of that kidney failure twice?!  Maybe they won't be so lucky the second time around.


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The Atypical HUS Foundation encourages patients and investigators to share information and explore options/resources as we work together to gain insight into this rare complement disorder. By increasing contact opportunities with researchers and medical personnel interested in helping the aHUS community, our stories foster a better understanding of atypical hemolytic uremic syndrome.

Sharing information, inspiration and support for one another, we seek to gather together people and knowledge as we strive to improve the lives of patients and families dealing with a diagnosis of aHUS.

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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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