The Atypical HUS Foundation

“The fight doesn’t stop until everyone is safe!”

“The fight doesn’t stop until everyone is safe!”  That’s what my friend from Australia, Sarah Mulligan said over a year ago when we were trying to convince the Australian health minister to fund Soliris for aHUS patients.  That held true back then and it holds true now.

 

A big battle was won in Australia on December 17, 2015 when the PBAC recommended aHUS patients be allowed to continue their Soliris treatments for another 12 months (24 total months including this past year) and their Health Minister Sussan Ley announced that she will follow their recommendation!  Thanks to all those who signed the petitions and sent emails.  You made a difference!

 

This is great news but only temporary as our Australian friends will be faced with the same problem at the end of 2016.  In addition, those who are on dialysis do not receive Soliris and therefore cannot get a kidney transplant.  So while the news was great, it is short term and does not include everyone.

 

Please help me send a message to Sussan Ley thanking her for this major decision, but asking her to make this long term and to include those on dialysis.  Our friend Anne-Sophie Van Turenhoudt from Belgium had been in intense negotiation with her health minister and on December 23, 2015 she finally won the fight for 22 patients on dialysis to receive Soliris.  I believe we can use Anne-Sophie’s amazing advocacy to convince Sussan Ley that dialysis patients in Australia should also receive this drug.

 

Here my email to Sussan Ley with help from the president of aPSGA, Kerri Grey.  Feel free write your own email or use mine in its entirety.

 

***********************************************************************

 

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

 

 

The Honorable Sussan Ley, MP,

 

I write to congratulate and thank you for the recent decision to extend access to Soliris to people in Australia suffering from aHUS for a further 12 months.  I am very relieved that the PBAC made this recommendation and extremely grateful that you have heeded their recommendation as your decision to do so will not just save lives but also save the quality of life of your fellow Australians who suffer from this devastating disease.

 

While I am relieved that these aHUS patients have another 12 months access to treatment, this decision does not change the criteria that will mean that these patients will still be facing the same risks this time next year.  I urge you to consider altering the criteria so that Australian aHUS patient’s lives are not put at risk in 12 months.

 

I also urge you to consider those on dialysis and in need of a kidney transplant.  This group of Australian aHUS patients is requiring a transplant because they did not have access to Soliris when they got sick and they therefore lost their kidney function.  These patients are generally not considered for a transplant because of the high risk of the aHUS recurring and therefore causing the transplanted kidney to also fail.   The body produces antibodies after receiving someone else’s organ; it is these antibodies that trigger the immune system to become active, which is what triggers an aHUS response.  The newly donated kidney is vulnerable so it is imperative that Soliris is available for patients pre and post transplant.  Due to lack of available donated organs in Australia I can not comprehend why you would put a gift such as a donated organ at risk.

 

 

On December 23rd, my friends in Belgium finally won their fight to have Soliris funded for patients on dialysis and requiring a transplant.  Their Health Minister Maggie De Block finally understood why the decision needed to be made to protect the lives of aHUS sufferers requiring a transplant in Belgium (see link).

 

http://www.deblock.belgium.be/fr/la-ministre-maggie-de-block-et-la-...

 

 

Once again I thank you for your decision to give aHUS patients who have been receiving Soliris for the last 12 months another 12 months.  You are saving lives and keeping many from suffering kidney damage that will force them to need dialysis.  However, please remember this is only a short term fix if the criteria is not altered so that these patients don’t have to come off treatment again in 12 months time.   Also, please don’t forget about those left behind who need this medicine to get a kidney transplant, stop dialysis, and get their lives back.  You have the power to save their lives. 

 

Thank you for your consideration and compassion.

Jeff Schmidt

 

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Comment by Len Woodward on January 6, 2016 at 4:46am

Indeed it was right of the health authorities there to reconsider the way in which treatment was withdrawn, to find a way in which it can be done in a safe and sustainable way in which all who need treatment get it for as long as they need it; and so make it affordable so all are within scope.

Well done to aPSGA for galvanising the patient's voice to persuade a rethink to allow time to manage withdrawal ,where clinically correct thing to do, properly so that patients have the best clinical advice for the decision and on going clinical monitoring.

One day soon all the studies around the world about withdrawal including now Australia will give greater understanding about risky and favourable outcomes. Patients and their families have a part to play in that.

Canada and New Zealand are other Commonwealth Countries that should follow Australia's approach.  

 

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Be proactive! Get the medical basics of aHUS, what lab values to monitor, and areas of concern...check out the "aHUS Bootcamp" and "About aHUS" tabs at the top of this page!
If your doctor has never treated a case of aHUS, please print out our 'Doc to Doc Registry' and ask him/her to contact a physician versed in the complexities of aHUS and new options for 2011 genetic testing and treatment.

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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.)

Normally, aHUS pearl bracelets to be made-to-order and as such expect a 4 to 6 week window before your custom bracelet is shipped.  In a rush?  Contact info@atypicalhus.org with your request and details.

 

 Donations of a specific dollar amount are welcome-every dollar will help aHUS research efforts supported by The Atypical HUS Foundation at www.atypicalhus.org.


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Barnhart, MO 63012


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