Newspaper article The Canadian Press

PC MPP Proposes Ontario All-Party Committee on Rare Disease Treatment

Newspaper article The Canadian Press

PC MPP Proposes Ontario All-Party Committee on Rare Disease Treatment

Article excerpt

PC MPP proposes rare disease committee

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TORONTO - A woman whose immune system is attacking her body's cells -- one of only about 30 people in Ontario with the condition. A mother who took her children to the United States so they could regain some mobility lost due to their rare connective tissue disorder. A man whose rare condition went undiagnosed for 32 years until he took research into his own hands.

Those three people came to the Ontario legislature Monday as representatives of the recent wave of rare disease sufferers who had pleaded with the government for help, and who are now looking for a comprehensive strategy.

Michael Harris, a Progressive Conservative MPP, said a new group of people with rare diseases could easily show up at the legislature every week, or maybe even every day.

"(Their concerns) are all different, whether it be out-of-province coverage, a pharmaceutical, a proper diagnosis," he said.

The government will typically respond to the concerns with measures that could include a review or funding for a new drug, Harris said. But he's now calling for an all-party committee to form a comprehensive strategy rather than a "piecemeal approach."

Jennifer Hamilton is one of about 30 people in Ontario with atypical hemolytic uremic syndrome, or aHUS, a life-threatening condition in which the immune system attacks the body's cells, damaging blood vessels.

Ontario recently started providing interim funding for Soliris, a drug estimated to cost between $500,000 and $700,000 annually per patient, but Hamilton said she doesn't qualify.

Health Minister Eric Hoskins said of about 23 applications for Soliris funding, the province has approved 10 and is reviewing another three.

He applauded Harris for his advocacy on behalf of rare disease sufferers, but wouldn't say yet if the Liberal government will support the motion. Hoskins noted that Ontario is already co-chairing a national committee looking at the same subject, which will report to the health ministers' meeting in January. …

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