Since childhood, Brampton lawyer Ian Stedman suffered from unexplained fevers, debilitating headaches, whole body rashes, and vision problems that doctors couldn’t piece together or diagnose.
When the same symptoms started cropping up in his young daughter two years ago, Stedman pulled out all the stops to get to the bottom of it, reading medical journals and landing on a little-known condition known as Muckle-Wells Syndrome, which a specialist confirmed.
“There was an overnight difference when I got the medication,” Stedman said Monday as Progressive Conservative MPP Michael Harris launched his latest push to get help for Ontarians with rare diseases.
He is calling for the formation of an all-party select committee of legislators to tour the province, hearing from affected families, doctors, medical experts, rare disease groups and others to recommend changes making the health care system more responsive.
MPPs will debate the idea Feb. 25.
“For far too long, rare disease sufferers have endured endless hurdles,” Harris (Kitchener-Conestoga) told a news conference, where he launched a web sitewww.treatraredisease.ca .
Many have gone deep into debt to pay for treatments and medications the province doesn’t provide or won’t cover and feel “abandoned by their government,” Harris added.
Health Minister Eric Hoskins needs to bring an end to “the piecemeal approach” for people who bounce from doctor to specialist without the answers they need because “the current system isn’t working,” Harris said.
Hoskins, a family doctor, acknowledged the “challenge of proper diagnosis” for rare disease patients and told the legislature Ontario is co-chairing a national committee of provinces and territories looking at better ways of handling rare diseases. That committee will report in January.
Noting that as many as 8 per cent of the population is dealing with some form of rare disease, Hoskins said governments across the country are working together “so we can provide the care these people so rightly deserve.”
Hoskins wouldn’t say whether he would support the Harris motion but spoke to the need for a “consistent” national strategy “in terms of funding the medicines as well and also making sure that we have, across the country, the supports available that are needed.”
Stedman and his daughter, 3-year-old Lia, are now on a drug called Ilaris through his private medical coverage. It costs $18,000 every eight weeks for an injection, which gets them over symptoms from the syndrome caused by a genetic mutation.
“We don’t have a cure but we do have a treatment,” said Stedman, who noted he is fortunate to have private drug coverage for his medication while many Ontarians with rare diseases do not.
“I lost a lot of days of school, of work, of life.”
Jennifer Hamilton, who has aHUS, short for the life-threatening genetic disease called atypical Hemolytic Uremic Syndrome, was misdiagnosed for years until a hepatologist realized what the real problem was and sent her for tests.
The Toronto mom is now on expensive breakthrough drug called Soliris thanks to private insurance but due to a change in circumstances will lose that coverage.
“Since I started the drug I have dramatically improved,” said Hamilton, who works full-time as an editor and twice been declined provincial drug coverage and fears a severe decline in her health without taxpayer help.
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