Under the headline “Why it’s great to be Canadian” – an online article on MSN Money last Monday concludes that Canada is a great place to live, and this according to the Organisation for Economic Co-operation and Development (OECD)’s Better Life Index, which states that the Great White North performs “exceptionally well in measures of well-being.”
Unless, of course, you are someone with Cystic Fibrosis, a genetic life-threatening disease, and you are unable to get access to a proven new medication – Kalydeco – that is able to restore your life to near normalcy. True, the cost of this medication at $400 a pill (twice a day) is as spectacular as it is effective, and definitely not in reach of the average individual in terms of having the means to pay for it. Unless you are so fortunate to have a private insurance plan, your only hope will be to see it covered under a provincial plan. That, or leave the country – and move to a place where the drug is funded, such as Ireland, the UK – or the US, where it will actually be free on compassionate grounds (courtesy of Vertex, the drug’s manufacturer) if you cannot get it covered under a private or state Medicaid plan.
Of course, there is every intention to provide public coverage for Kalydeco in Canada, but until someone blinks first in the negotiation process between Vertex and provincial representatives, Canadians in dire need of this brilliant new drug are left out in the cold while CF takes its destructive toll on their lives and future prospects to survive this terrible disease to a reasonable age.
It is not always easy to do what is right, but if we have a choice in the matter we have an ethical obligation to do the right thing. Just as we would want to do everything in our power to save the lives of those affected by a natural disaster – and as a country provide as much as $5 million to support humanitarian organizations helping typhoon victim in the Philippines – so should we do everything in our power to help those amongst us here in Canada when life has not be kind to them and afflicted them with a deadly disease. Doing the right thing now is to provide Canadians with Kalydeco now – today! – so they no longer need to feel like third class citizens in their own country, and abandoned by their own government.
H.L. Mencken once said that “Every decent man is ashamed of the government he lives under.” Funding Kalydeco will prevent this rather cynical view from becoming a truism, at least for those who like to believe their elected representatives are here to look after them in times of their most urgent and life-saving needs.
Hello, I’m writing because my wife was diagnosed with Cystic Fibrosis when she was a baby. She’s outlived predicted age limits time after time, and now at age 35 the dis-ease is really becoming more of a challenge in our lives.
We found out through a recent hospital visit that she has the G551D mutation. I hope for the future of my wife and I that funding becomes available very soon.