TORONTO, Dec. 13, 2012 /CNW/ -
The Hon. David Alward, Premier, Government of New Brunswick
The Hon. Hugh Flemming, Minister of Health, Government of New Brunswick
Mr. John K. F. Irving, President, Ocean Capital Investments
M. Pierre-Yves Julien, President & CEO, Medavie Blue Cross
My name is Mark Brennan, and I live in Saint John, New Brunswick. I have
an ultra-rare, progressive and fatal blood disease called paroxysmal
nocturnal hemoglobinuria (or PNH). I have lived with this disease for
over eight years and every day since my diagnosis, the constant threat
of death loomed over me - until the day I began treatment with a
life-saving drug called Soliris. That's when my life began again.
Then in July 2011, another miracle happened. Provinces including New
Brunswick agreed to fund Soliris - the first and only treatment for
PNH. When this nation-wide announcement was made to provide
government-funded access to this remarkable drug, I was ecstatic. You
can't imagine how it felt knowing that the drug that alleviated my
painful symptoms, improved my kidney function and reduced my threat of
blood clots, would be available to me and other patients across Canada.
More than one year has passed since this landmark decision by the
provinces, and I am dismayed and distressed to report that I still find
myself without either private or government-funded access to Soliris.
This is wrong. What makes it worse is that, as far as I know, I am the only Canadian PNH patient in this predicament where neither my
employer nor my government are taking any steps to save my life.
With no one willing to accept any responsibility, my life continues to
hang in the balance. My employer has refused to cover Soliris through
my private health insurance. My province - the Government of New
Brunswick - tells me my family would have to qualify for social
assistance just to be in a position to apply, but not even be
guaranteed to receive, funding for the treatment.
As I'm sure you can imagine, facing a life-threatening illness like PNH,
and making the decision to intentionally drop below the poverty line in
order to be eligible to receive a life saving treatment, is both
terrifying and demoralizing. My case demonstrates the appalling
disparities that still exist in this country with respect to access to
treatment between private and public health coverage, and from province
I urge you to ask yourselves what value a human life has, and implore
you to come to a solution before it's too late. Consider that the power to save lives - my life - rests in your hands.
cc: Hon. Trevor Holder, Minister of Tourism, Heritage and Culture,
Government of New Brunswick
Mr. Marc Léger, Deputy Minister of Health, Government of New Brunswick
Ms. Leanne Jardine, Executive Director, Pharmaceutical Services,
Government of New Brunswick
SOURCE: Canadian Association of PNH Patients
For further information:
Canadian Association of PNH Patients