You Signed. Now Please Fill Out the Form to the PBAC. Help Our Australian aHUS Friends on Dialysis.

Here’s another way you can help our friends in Australia who have continued to be denied the life-saving drug Soliris. In July 2017 there will be a meeting by the PBAC to determine if Soliris should be provided to aHUS patients who need a kidney transplant. You can send a personal submission to the PBAC to show your support of our Australian friends. We only have until tomorrow June 7, 2017 to send them so please hurry and ask your family and friends to help. I listed my answers to some of the questions. Feel free to copy any or all of them. We need to send as many submissions as we can. There have been over 45K who have signed the petition. 45K submissions would certainly make an impact! Here is the link to fill out the submission: http://www.health.gov.au/internet/main/publishing.nsf/Content/PBAC_online_submission_form Please leave a comment if you send in the submission form so we can know how many have been sent! Thank you! *********************************************************** Medicine to which this submission relates : Soliris (Eculizumab) Date of PBAC meeting: July 2017 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: "Those whose kidneys have failed due to aHUS rely on expensive dialysis treatments just to keep them alive. They are unable to work because the time they are not on dialysis, they are recovering from the punishment dialysis does to their body. Soliris will allow them to have a successful kidney transplant and allow them to return to working and contributing to society. Australia is behind the times on funding Soliris for dialysis patients. Many countries have realized that this drug is effective for these patients. 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)."