Make Soliris (Eculizumab) Available for Patients With aHUS in Ontario
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My name is Rachael and I am 22 years old from Gananoque, Ontario. In August 2015, I became extremely ill and almost lost my life. I was diagnosed with an “ultra-rare” disease called atypical hemolytic uremic syndrome (aHUS). Only 2 people for every 2 million around the world have this disease. Like many other Ontarians with rare diseases and cancers, I need help to convince the Government to approve a medication that my doctors say that I require in order to prevent relapse of this devastating disease. Please sign this petition so that every Ontarian, just like me, has access to life-saving drugs for rare diseases and cancers.
When aHUS first attacked me in 2015, I almost died and spent several weeks in the ICU, hospitalized for several weeks while many physicians and specialists worked on my case. This disease caused my kidneys to fail and I am now on dialysis 4 times per week. I am waiting for a kidney transplant. AHUS is about more than dialysis though. AHUS is a chronic, genetic and life-threatening condition that progressively attacks vital organs, leading to kidney failure, heart attacks, strokes, and death. Without effective medication for aHUS - the prognosis for aHUS is grim. The description in the prognosis section of Wikipedia is for the scenario before a miracle drug became available.
The miracle drug is called Eculizumab, or Soliris. Soliris not only saved my life but it also let me return to being a healthy Ontarian able to complete a nursing degree come June 2017.
Patients on eculizumab have a healthy and vibrant future. Health Canada approved Soliris for aHUS (the ONLY drug available for aHUS) so that patients in Canada can discontinue chronic plasma transfusions, get off dialysis and be eligible for kidney transplants. Because of Soliris I was able to resume and complete my nursing degree and am to graduate in June 2017. Since 2015, my parents’ private prescription drug insurance provided me with Soliris, which made me perfectly healthy again. Given the extraordinarily expensive price of this medication, being ~$700,000 per year, obviously, NO ONTARIAN CAN AFFORD SOLIRIS out of pocket. Knowing that my parents’ drug insurance would end once I graduated as a nurse, I applied to the Ontario Government to continue my Soliris infusions. My doctors - including a world-renowned expert in aHUS from SickKids in Toronto, Ontario - told the Government that I must not discontinue this drug, given the severity of my diagnosis and initial onset of disease impacting multiple vital organs and permanently damaging my kidney's.
Shockingly, the Ontario Government disregarded the doctors’ expertise and denied to cover Soliris, which saved my life and without it- not only is risking my life but removes my eligibility for a kidney transplant.
There are many other Ontarians just like me. The Ontario Government is using arbitrary cost-saving algorithms to deny Soliris rather than expert physicians’ medical recommendations. Diseases such as aHUS are so rare that doctors rely on an international consortium of collaborating experts who are at the cutting edge of research for the rarest of diseases such as aHUS. The Ontario Government is disregarding their advice.
The Honourable Dr. Eric Hoskins has announced several times since 2015 that his Government would approve Soliris for Ontarians with aHUS. In fact, he recently doubled down on his comments in the Ontario Legislature (May 2nd with Jeff Yurek MPP) for patients with rare diseases when he touted the benefits of “OHIP+” for Ontarians under 25. He underscored that the Ontario Government would give those under 25 all the medical support and medication that they need to be healthy and thrive “including those with rare diseases”.
And yet, the Ontario Government has turned down Soliris against my physicians’ recommendations. Please, won’t you join me in signing this petition to keep the government accountable to what it promises to its citizens? Please sign even if you don't live in Ontario. It would be very helpful if you could add a contextual reason as to why you are making the effort to sign.
Thank you in advance for signing this petition and sharing it with everyone you know.
With many thanks
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