An important update to the Ontario Exceptional Access Progam(EAP) funding criteria of eculizumab 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 the Ministry of Health and Longterm 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.
Because of our continuous advocacy, in February 2015 the Ontario Public Drug Programs (OPDP) announced that eculizumab (Soliris) 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. Then in February 2016 the OPDP announced that eculizumab funding would also be provided for kidney transplant patients at the time of transplant but the criteria stated it would only be for a maximum of 6 months. This limited time made patients and their physicians reluctant to even try because the need is usually longer than 6 months.
At a meeting last October the OPDP verbally agreed that they would change the statement around the timelines for aHUS funding in the setting of kidney transplants which involved removing “maximum 6 months after” from that section of the criteria for eculizumab. Following another meeting, we received news recently that the ministry’s internal documents have been revised to remove the 6 month maximum. aHUS Canada has been assured that with the ministry’s next website update they make, the new public criteria document will no longer have the “maximum of 6 months” phrase in it. aHUS patients in Ontario in need of a kidney transplant,who have waited until the limits were removed, could now begin the process of a transplant.
As soon as the public document is changed we will provide you with the updated EAP funding criteria for eculizumab. We still have no guarantee for how long the provincial Health Ministry will continue to provide funding but after 6 months the duration of funding will be re-evaluated on a case-by-case basis.
Even though aHUS Canada does not support The Ontario Health Ministry removing patients from treatment, the OPDP will sometimes “recommend a pause in treatment” to see how the patient will do without. We have serious concerns about this as these decisions are not based on scientific evidence or the doctor’s advice and there is no guarantee how quickly a patient would regain access when needed. The current application process takes too long and can cause serious complications. They have agreed to commit to a timely, efficient process for reactivation in case of relapse. Physicians will be given a direct phone number to contact the Ministry for an expedited response.
For aHUS patients in other parts of Canada who still have no access or limited access to eculizumab, we feel the chance of having public funding has increased because of the progress made in Ontario. However there is still lots of work to be done. It would be greatly appreciated if patients let us know what the current funding situation for eculizumab(Soliris) is in other provinces and what challenges patients have experienced with access if any. Please send an email to firstname.lastname@example.org 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.