The Atypical HUS Foundation

Please Help Our Friends in Australia Who Desperately Need Soliris

Our friends in Australia who started Soliris treatments last December 1st are about to lose access to those treatments at the end of November.  Please send their Health Minister Sussan Ley an email like the one below to show your support and to put pressure on.  Feel free to copy the exact email but replace my story (in red) with your personal story.  Your personal story just may be the one that makes a difference!

And please sign the petition that will get sent to Sussan Ley.

https://www.change.org/p/minister-for-health-hon-sussan-ley-ministe...


sussan.ley.mp@aph.gov.au
minister.ley@health.gov.au

Subject:  Don't Stop Access To Soliris in November And Give Soliris to Those Needing a Kidney Transplant


The Honorable Sussan Ley, MP,


December 1, 2014 marked a very important day in Australia.  That was the day your government finally started providing access to the life-saving drug Soliris (eculizumab) for some patients with aHUS in Australia.  This has saved the lives of several people and I would like to thank you for that.  But according to your policy, those who started Soliris last December will be forced to stop their treatments at the end of November (after 12 months) unless their aHUS is active.  Since this treatment effectively shuts off the disease and makes it inactive, that will likely be everyone.


Then what will happen next is some (or all) will have their aHUS become active again forcing a relapse.  aHUS can attack at any time. There is no cure, there is only an effective treatment with the drug Soliris. You can’t afford to “see what happens” by having them stop their treatments and wait for a relapse.  And for those whose aHUS presented prior to having access to Soliris, it is even more critical that they don’t stop their treatments as whatever kidney function they have left will likely be destroyed permanently on a relapse.


I know there is no long term data yet on Soliris for treating aHUS but rather than stopping after 12 months and letting a relapse occur that will cause permanent damage to major organs happen (kidneys, heart, or brain) or even death, you should continue the Soliris until research tells you it’s not the solution or until one of the other complement inhibitors that are in trials becomes available.  The experts in the US recommend Soliris be taken for life.  There is much more data on Soliris in the US than in Australia as your government has only recently started funding it (approved in 2011 in the US).  And there are other countries besides the US like Spain, France, Germany, Russia, Netherlands, and Italy that are providing access to Soliris long term.  England also this year ruled that Soliris is the only effective drug for treating aHUS and they are now be providing Soliris for their aHUS patients immediately and long term.


Besides the patients coming off Soliris at the end of November, there are those in need of a kidney transplant because they did not have access to Soliris and they lost all of their kidney function.  In order to get a successful kidney transplant they need to be on Soliris.  And with the shortage of organs in Australia for donation, you can’t afford those current restrictions as they will put newly transplanted organs at risk.  A transplanted kidney will be destroyed by aHUS without long term access to Soliris. 


I have a daughter in the US with aHUS who is fortunate to have access to Soliris.  She was misdiagnosed with TTP for the 1st 6 months so she was not treated with Soliris and has permanent damage to her kidneys.  But after starting Soliris she regained most of her kidney function and was able to stop dialysis.  She has been on Soliris for 3 ½ years and is able to work a full-time job.  She has been told by her doctor that she will need to be on Soliris for her entire life.


Please don’t stop treatments for your aHUS patients at the end of November.  You will be making a big mistake and risking lives.  And please give access to those who are on dialysis and need a kidney.  The world is watching what you do Sussan Ley.


Thank you for your consideration.

Jeff Schmidt 

 

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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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Your donation of $295.for an aHUS pearl bracelet will directly fund research to help aHUSpatient and their families. Each bracelet has an appraised value of $925, and is offered with your gift of $295. Note:  For shipping outside the USA, please add $25. to cover international shipping costs.

(Note: Bracelets do not qualify as tax deductible donations under IRS regulations.)

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