A story that is far too close to home; Canadian aHUS patient lobbying government for access to Soliris – December 9, 2014

Toni Vernon, a 59 year old Canadian mother-of-four, is lobbying her provincial government for access to the only treatment that will allow her to lead a normal, active, healthy lifestyle. Her harrowing story echoes the experience of our aPSGA members for most of this year.

In an article published in the Toronto Star on December 4, 2014 http://www.thestar.com/news/gta/2014/12/04/toronto_woman_with_rare_disease_fights_province_for_lifesaving_but_costly_drug.html, the mother-of-four shares her personal story of lobbying her government to secure-subsided access to Soliris in order to receive a transplant and live dialysis-free.

“I was basically told that without Soliris, I have to be on dialysis for the rest of my life”, explains Toni.

The only way Toni and fellow Canadian aHUS patients will gain access to Soliris is to apply to the manufacturer on compassionate grounds. Meanwhile, the provincial government (in Ontario) is in ongoing negotiations with the treatment’s manufacturer, with a spokeperson for the Health Minister, Eric Hoskins explaining, “requests will be considered on a case-by-case basis for individuals who have been urgently hospitalised due to immediate life, limb-, or organ-threatening complication” resulting from their illness.

Currently the Canadian Health Ministry limits temporary funding to a maximum of six months, with further funding reassessed at the end of this period. Director of Nephrology at Sunnybrook Health Sciences Centre, Canada, Dr Michelle Hladunewich likens Toni’s lack of access to Soliris to living a “life on hold”, citing “She really can’t do the things she wants to do. She’s bound by a dialysis machine.”

Toni told the Toronto Star that she is“disgusted and devastated by the fact that they are playing, in my opinion, with my life and other’s like me.”

Another Canadian patient, Johann Kerlow, who received Soliris for six months through the manufacturer’s compassionate scheme is questioning why the government would temporarily fund a treatment that individuals need for life, and “why they won’t do the same for anyone with the same diagnosis.”

Parallel to Australia, Soliris is funded by the Ontario government for the treatment of another rare illness, Paroxysmal Nocturnal Haemoglobinuria (PNH).

The heart-wrenching stories of both Toni and Johann strongly resonate with the aHUS community Down Under.

This festive season, we open our hearts to every patient, family member and friend affected by aHUS in some capacity. Our thoughts are with you.

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