The Atypical HUS Foundation

Send Your Submission to the PBAC in Australia to Help Our aHUS Friends on Dialysis

Here’s a new way you can help our friends from Australia.  In March 2016 there will be a meeting by the PBAC to determine if Soliris should be provided to aHUS patients who are on dialysis.  You can send a personal submission to the PBAC to show your support of our Australian friends.  We only have until Feb 10, 2016 to send them so please hurry and ask your family and friends to help.  I listed my answers to some of the questions that you may have trouble thinking of answers to, so feel free to copy my answers.  We need to send as many of these as we can!

Here is the link to fill out the submission:


Here is the link to the agenda of the meeting:


Medicine to which this submission relates :  

Soliris (Eculizumab)

Date of PBAC meeting: 

March 2016

Submitted by (individual, collective group, health professional): 

Jeff Schmidt

Please include any declarations you wish to make regarding the PBAC submission upon which you are commenting. If you have no declarations to make, please respond “nil”:  

aHUS patients who are on dialysis are in need of 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.

Consumer input: Please indicate whether you are a person with this medical condition, a friend or family member, a prescriber, a representative of an organisation or other interested person:  

I am a family member.

What comments would you like the PBAC to take into account when it considers this submission? You may comment on any aspect of the drug, vaccine or medicinal product in question. The following points may be useful for guidance: 

For years, Belgium has had the same policy as Australia where as those on dialysis were not considered for access to Soliris. But on December 23, 2015, Maggie De Block, Minister of Social Affairs and Public Health, announced that she had reached an agreement with Alexion Pharmaceuticals. And from this agreement, the orphan drug Soliris will be available immediately to all Belgian patients with ESRD caused by atypical hemolytic uremic syndrome (aHUS). These patients will therefore be placed on the waiting list for a kidney transplant. It was agreed that access to Soliris should reduce the risk of rejection of the donated kidney. We applaud Ms. De Block for her decision to save the lives of those patients on dialysis.  And we ask you to do the same.

How did you learn about this consumer submission process to be able to submit your comments today? Are there any other comments you would like to make about the process for submitting consumer input to the PBAC?  

I learned about this from aSPGA (AHUS Patient Support Group Australia).

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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.

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...

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



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