Open letter regarding Saint John man's urgent need for catastrophic drug coverage

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

OPEN LETTER

Dear Sirs,

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 to 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.

Respectfully submitted,

Mark Brennan

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:

Barry Katsof
Canadian Association of PNH Patients
info@pnhca.org

Profil de l'entreprise

Canadian Association of PNH Patients

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