* The Honourable Deb Matthews, Minister of Health and Long-Term Care, Government of Ontario
* Ms Diane McArthur, Executive Officer & Assistant Deputy Minister, Ontario Public Drug Programs Ministry of Health and Long-Term Care, Government of Ontario
I sincerly implore you to consider this personal and heart-felt appeal that the Ontario Government change its policy on the treatment for Paroxysmal Nocturnal Haemoglobinuria (PNH). PNH is a very rare and debilitating disease affecting the blood and major organs that ultimately leads to death if left untreated. A friend of mine is dying from PNH and does not have access to the necessary treatment because of the Ontario Government’s policy on providing the necessary treatment.
Lucas Maciesza, a 26-year old from Wellington County, Ontario, has PNH and is currently in critical condition in hospital. The treatment program to help Lucas and others is literally stored in a medicine cabinet that the family cannot access.
The treatment, Soliris, was approved almost two years ago by Health Canada. It allows a PNH patient’s life expectancy to return to that of a healthy person. For the record, Soliris is publicly funded and accessible to patients with PNH in 25 countries, including the US, Japan, the European Union (including France, the UK and Greece), Turkey and Latin America just to name a few. Canada is currently one of the only industrialized countries that does not yet ensure patient access to Soliris. Lucas and his family have tried everything in their power to access this treatment, but have been refused by our government at all levels.
Without access to treatment with Soliris, Lucas will die. It is unethical and immoral to deny this treatment for this young man and other PNH patients in Ontario based on concerns over its cost or current policies.
No person who suffers from a life-threatening illness should ever have to go through such an ordeal, where policy takes a higher priority than common sense and human compassion. I understand that the Ontario government is doggedly sticking to their policy and there’s nothing that can be done to change it. The fact that my government is taking such a stance is abhorrent and goes against the values that I had once believed to be integral to our society.
Yours very truly,
Colin Welburn, M.Eng., P.Eng.
Project Manager Specialist, RWDI
190 Somerset Street West – Suite 210
Ottawa, Ontario, Canada K2P 0J4
Tel: (519) 823 – 1311 x 2325
Direct: (613) 730 – 7608
Mobile: (613) 851-6226
Fax: (519) 823 – 1316