Fighting for Rare Diseases

Today is International Rare Disease Day. In honor of that, we wanted to feature a man who’s doing all he can to help give back and lead the fight to fix rare disease policy.

When he was a two, Simon Ibell was diagnosed with Hunter syndrome, a rare metabolic disease that affects about 2,000 people around the world and about 30 of his native Canadians. Those with the disease lack the necessary enzyme to break down complex sugars in their cells. Those sugar chains accumulate over time, reaching dangerous levels that can cause organ damage and, possibly, death.

Three years ago, Ibell convinced the Ontario government to fund Elaprase, the only drug known to halt the growth of Hunter syndrome. The yearly cost of the drug is about $400,000.

Despite this, the Canadian government still has no healthcare policy to support rare diseases. Since so few are afflicted with these diseases, without government support, pharmaceutical companies have little incentive to develop new therapies. And for the therapies that do exist, they often face an extended wait for approval, in addition to an inflated cost for those who need the treatments.

Although Ibell, now 33, already won his individual battle, he’s determined to help all of the 2.8 million Canadians (one in 12) suffering from rare diseases. Ibell’s iBelieve Foundation has joined forces with the Canadian Organization for Rare Disorders to create Be Fair 2 Rare, a public outreach campaign to raise awareness and bring some progress to the lack of rare disease policy in Canada.

Ibell, a big sports fan and former manager of the Canadian national basketball team, has garnered the support of some of Canada’s most famous athletes, including Steve Nash.

“Through my friend, Simon Ibell, I’ve learned the incredible struggle people with rare diseases face,” Nash told the Toronto Star. “It’s crucial in many cases they get support from their government to overcome their illness. We as Canadians need to give those affected the best chance at life through new health-care opportunities.”

Ibell kept going when he could have been content with his personal success. There’s a lot to admire in that. Head over to Be Fair 2 Rare’s website and check out the campaign.

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About Ryan O'Hanlon

Ryan O'Hanlon is the managing editor of the Good Men Project. He used to play soccer and go to college. He's still trying to get over it. You can follow him on Twitter @rwohan.

Comments

  1. I can’t say enough good things about Simon. My son has MPS III and Simon has been such a great friend to us. He speaks with me about twice a week and his guidance and leadership have been such a huge comfort to me.

    I happen to live in the US and know that Simon has similar relationships with people in Europe. Simon is truly making a difference around the world.

    The world can live without another sleeping aid but there are many children afflicted with MPS that won’t live a full life without the treatment. For particularly challenging versions of MPS – like the one my son has – there is no treatment yet. Simon is a strong voice for many the people who would suffer without medical help.

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