Make Soliris treatment an option for patients with aHUS and their health care providers.

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Paul is a hardworking student, majoring in Criminology at the Simon Fraser University. During this summer vacation, he was diagnosed with an extremely rare, life-threatening, progressive disease called aHUS (Atypical Hemolytic Uremic Syndrome). It is characterized by low levels of circulating red blood cells due to their destruction (hemolytic anemia), low platelet count (thrombocytopenia) due to their consumption and inability of the kidneys to process waste products from the blood and excrete them into the urine (acute kidney failure), a condition known as uremia. The disease affects children and adults alike and it leads to formations of blood clots in the body that can lead to stroke, heart failure, kidney failure, and death.

Fortunately, there is a cure for treating aHUS, and preventing TMA activity, which is the primary cause of vital organ failure. It is Eculizumab, sold under the trade name, Soliris. However, the BC government does not provide MSP coverage for the treatment as of now. As a result, Paul and many other are not able to receive the treatment that is crucial for them. 

Because of this, we are asking people to sign this petition so that this problem can be addressed to the Minister of Health so that he may immediately address this problem so that Paul and many others affected by aHUS can gain a second chance at life. 

Thank you for joining us in helping others who are in need.

 

TO British Columbia Minister of Health, Honourable Adrian Dix:

The petition of the undersigned of British Columbia, states that:

WHEREAS Health Canada has approved the use of Soliris for patients with aHUS, an ultra-rare, chronic and life-threatening genetic condition that progressively damages vital organs, leading to heart attack, stroke and kidney failure.

AND WHEREAS Soliris, the first and only pharmaceutical treatment in Canada for the treatment of aHUS, has allowed patients to discontinue plasma and dialysis therapies, and has been shown to improve kidney function and enable successful kidney transplant.

AND WHEREAS the lack of public funding for Soliris is especially burdensome on the families of British Columbia children and adults battling this catastrophic disease.

Your petitioners respectfully request Soliris be immediately provided as a choice to patients with aHUS and their health care providers in this province through public funding.

10 October, 2017



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