The Atypical HUS Foundation

The Australian Government is Going to Stop Soliris Access After 12 Months to "See What Happens." Let's Tell Them No!

December 1, 2014 marked a very important day in Australia.  That was the day their government finally started providing access to the life-saving drug Soliris (eculizumab) for some patients with aHUS in Australia.  This has saved lives.  But according to 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.  That will likely be everyone as Soliris effectively shuts off the disease making their aHUS inactive.


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.  aHUS patients in Australia can’t afford to “see what happens” by having their treatments stopped.


There may be 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 (kidneys, heart, or brain) or even death, they should continue the Soliris until research shows it’s not the solution.  Many experts in the US recommend Soliris be taken for life.  There is much more data on Soliris in the US than in Australia as their government has only recently started funding it.  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.


Not only are there patients coming off Soliris at the end of November, but 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, we 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. 


Please help me help our Australian friends by signing the online petition to convince The Honorable Sussan Ley, MP, Health Minister of Australia, to not force our friends to stop their Soliris treatments.


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

 

And of course it never hurts to email your personal plea to the Health Minister.


sussan.ley.mp@aph.gov.au

minister.ley@health.gov.au

 

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Comment by Len Woodward on October 29, 2015 at 7:42am

I disagree with the way in which eculizumab is being withdrawn in Australia  not that it cannot be withdrawn. Unless Alexion reduce the price of eculizumab by 60 to 70% and in doing so meet most cost effective thresholds  then not all aHUS patients are going to come within scope. If wasteful use of eculizumab can be addressed then more funds exist for others who need it for as long as is needed. Australian aHUS dialysis are not in scope and some would need it for a transplant.  The risks from withdrawal from eculizumab vary by person and tailoring and tapering to the individual rather than one size fits all is the safest ,most sustainable and affordable way to treat the disease. "So I say the Australia Government should abandon their  November game of "russian roulette" and care for individuals according to need and and bring more into scope. And patients should understand their circumstances better and discuss it with their clinicians accordingly and make informed decisions backed up with appropriate after care.. 

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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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