Important update to the Ontario EAP funding criteria for eculizumab

Here is an important update to the Ontario Exceptional Access Program (EAP) funding criteria of eculizumab (Soliris) for aHUS patients.

As you may know, aHUS Canada has been working toward better access to safe, effective treatments for patients in Canada with aHUS. Since Ontario’s Ministry of Health and Long Term Care (MOHLTC) has been willing to meet, listen to our concerns and more importantly respond to our requests for change, we are pleased to announce that eculizumab is now accessible beyond 6 months for Ontario aHUS patients seeking a kidney transplant. Hopefully this change is also embraced by the other Canadian provinces.

Because of our advocacy, in February 2015 the Ontario Public Drug Programs (OPDP) announced that eculizumab would be funded using specific criteria to determine who would be eligible. This was a first step but still inadequate because of flaws in the criteria. After further advocacy, in February 2016 the OPDP announced that eculizumab funding would also be provided for kidney transplant patients at the time of transplant. Unfortunately, the March 2016 criteria stated it would only be available for a maximum of 6 months after. This limited time made patients and their physicians reluctant to even try because the need is usually longer than 6 months and they did not want to take a chance if the withdrawal of eculizumab at 6 months would mean transplant failure.

At a meeting in October 2016, the OPDP verbally agreed that they would change the statement for aHUS funding in the setting of kidney transplants by removing “and for a maximum of 6 months after” from that section of the criteria for eculizumab. Following another meeting in early 2017, we received news that the ministry’s internal documents have been revised to remove the 6 month maximum. aHUS Canada was assured that the public criteria document will no longer have the “maximum of 6 months” phrase in it after the ministry’s next website update. Now aHUS patients in Ontario in need of a kidney transplant,who have waited until the limits were removed, can begin the process of a transplant.

The MOHLTC’s new EAP criteria pages for access to eculizumab for aHUS is HERE. The full document “EAP Reimbursement Criteria for Frequently Requested Drugs” where this is taken from is available HERE. There is no guarantee for how long the provincial Health Ministry will provide funding for each patient, but after each 6 month period, the funding should be re-evaluated on a case-by-case basis.

Even though aHUS Canada does not support the Ontario Health Ministry removing patients from treatment against their physician’s recommendation, the OPDP will sometimes “recommend a pause in treatment” to see how the patient will do without. We have serious concerns about this approach as these decisions are not based on scientific evidence nor the doctor’s advice and there is no guarantee how quickly a patient would regain access when needed. The MOHLTC has committed to a timely, efficient process for reactivation in case of relapse and physicians will be given a direct phone number to contact the ministry for an expedited response, however, the current application process sometimes takes too long and any delay can cause serious complications. 

For aHUS patients in other parts of Canada who still have no access or limited access to eculizumab, we feel that the chance of gaining public funding has increased because of the progress made in Ontario. However there is still much work to be done. It would be greatly appreciated if patients let us know what the current funding situation for eculizumab is in other provinces and what challenges patients have experienced with access, if any. Please send an email to with any information you can provide. The more information we gather from different provinces, the better we can advocate for patients.

aHUS Canada will continue to support the patients we represent. Part of this support involves advocating to help them gain access to the best possible treatments based on scientific evidence, as suggested by their treating physician.