Women with rare disease ‘felt let down’
Patients were forced to seek treatment in the U.S., but minister now vows to help
Two young women with a debilitating rare disease known as EDS are finally getting help from Ontario’s health system after years of getting the runaround.
Health Minister Eric Hoskins said he has formed a “working group” to help the pair — among 100 people with EDS in the province — get the treatment they need here instead of heading to the United States at their own expense.
“I was moved by and concerned by their stories several months ago . . . they felt let down,” Hoskins, a family doctor, told reporters Wednesday.
EDS is short for Ehlers-Danlos syndrome, caused by a genetic defect in the connective tissue that supports many body parts from skin to muscles and ligaments, making them prone to joint dislocations, chronic pain, blackouts, lost vision and serious bowel and bladder problems. It is difficult to diagnose.
After meeting with 22-year-old Brooklyn Mills of Oakville and Erika Crawford, 20, of Brantford, Ont., Hoskins said he invited their families to sit down with him and the working group to “make sure they are getting the answers they deserve.”
Crawford, who is hooked up to an intravenous pain pump, said through tears she would love to live a day where she doesn’t “feel like crap” while Mills recounted being “frail and almost lifeless” in hospital for weeks at a time. The two young women and their families held a news conference where parents Darren Crawford and Rebecca Mills talked of “financial ruin” from maxing out their credit cards and remortgaging houses.
The money was needed to pay bills into the hundreds of thousands of dollars for treatment and surgeries from an EDS specialist in Maryland after having trouble getting proper care at home. The two families are seeking reimbursement from the Ontario Health Insurance Plan.
“I was moved by and concerned by their stories several months ago . . . they felt let down.” ERIC HOSKINS HEALTH MINISTER
Progressive Conservative MPP Michael Harris (Kitchener-Conestoga) said the intervention by Hoskins is welcome but noted there are thousands of people with similarly rare diseases still waiting for help.
That’s shameful at a time when the government is under fire for being “quick to hand out” millions of dollars to teacher unions and school boards for bargaining but many Ontarians can’t get the health care they need, Harris added.
“There’s more and more that are going to have to actually come through this building for the govern- ment to actually wake up and get it,” he said.
“Working groups and talking about it are good things, but families are still cutting cheques, selling houses, running up lines of credit to pay for the treatment of their loved ones, whether it be for pharmaceuticals or treatments out of province.”
Hoskins said he is expecting recommendations “in short order” from the working group, which includes Critical Care Services Ontario, the Hospital for Sick Children and others. Reimbursement and training programs, if necessary, to get Ontario specialists up to speed on treating EDS will be considered.
“No family should have to go through the challenges that these families have had to go through,” Hoskins added after the half-hour meeting where they filled him in on the anguish they have experienced.
He said the government is already working with other provinces on a rare disease strategy to develop a “better, more co-ordinated” approach and is creating a special committee to conduct additional reviews of applications for out-of-country funding for pediatric surgery.
“I believe it will allow us, at an earlier stage, to get involved with some of these challenging cases but also make a determination, based on evidence, sooner and speed up the process.” The numbers 100 patients with EDS in Ontario Three million Canadians have rare diseases; two-thirds are children
$200,000 spent by the Crawford family on surgeries and treatments for daughter Erika, 20.
$1million spent by the Mills family on surgeries and treatments for daughter Brooklyn, 22.