The Atypical HUS Foundation

Tell the Pharmaceutical Benefits Advisory Committee (PBAC) to Recommend Soliris for Australians with aHUS

Our friends from AHUS Patient Support Group Australia (aPSGA) met with Alex Best from the office of Health Minister Sussan Ley to discuss the policy that will force those who started Soliris back on December 1st, 2014, to stop at the end of November to "see what happens".  The meeting seemed to go well and they asked him to postpone taking people off drug at this time of year since there is less staff available over Christmas and it is not an ideal time for people to be coming off the drug.

Another major problem with the Soliris policy is that those who are on dialysis and need a kidney transplant do not have access to Soliris.  There are a number of Australian aHUS patients in this situation.  They are left with a life of dialysis with no chance of getting a transplant.

Please help me email Alex Best to get him to help convince Sussan Ley to not stop access to Soliris for those have had access for 12 months.  And also ask that those who are on dialysis be given access to this drug so they can get a successful transplant..  Here is his email address:

The Pharmaceutical Benefits Advisory Committee (PBAC) is the organization that Sussan Ley gets her advice from on whether to make Soliris available.  Please email Andrew Wilson from the PBAC.  Here is his email address:

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


Here is an email I have sent to Alex and Andrew.  Feel free to use it but replace our story in red with your own story.


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


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 am thankful for that.  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.  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.  We 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, your policy should continue the Soliris until research tells 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, 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. 

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 recommend to Sussan Ley that she doesn't stop treatments for aHUS patients at the end of November.  This will be a big mistake and will risk lives.  And please recommend giving access to those who are on dialysis and need a kidney transplant.  The world is watching.

Thank you for your consideration.

Jeff Schmidt 

Views: 144


You need to be a member of The Atypical HUS Foundation to add comments!

Join The Atypical HUS Foundation


To ensure proper processing of your membership, please make sure to set your email filters to accept emails, from

The Atypical HUS Foundation is an all-volunteer organization. Please allow at least 72 hours for an email response confirming your membership request.  If you do not receive an email, please check your spam folder or email directly to

Membership is open to patients, family, friends, caregivers research and medical personnel.


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.

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.


NOTE: Our 'Send a Message" function on each Member's page allows for private discussion of personal content. As with any social network, be cautious about giving personal contact information (home email info, phone number) until you have an established relationship with another person, organization, or associated website.


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...

Help us fight the battle

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 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

Donations may be made via credit card or Paypal. If you prefer, checks made payable to The Atypical HUS Foundation may be mailed to:

The Atypical HUS Foundation
C/O Deborah Lewis
PO Box 333
Barnhart, MO 63012

For pearl bracelet orders, please allow extra time for processing checks. Questions about aHUS donations? Please email



© 2017   Created by Deborah Lewis.   Powered by

Badges  |  Report an Issue  |  Terms of Service