Ontario’s Health Ministry hears pleas for Ehlers-Danlos Syndrome support, treatment

Canadians with EDS have not been receiving the treatment they need, and are often left to their own devices. Families who have traveled to the U.S. for EDS treatment are seeking reimbursement from the Ontario Health Insurance Plan. These patients have finally been granted a press conference with Ontario’s Health Ministry. There is now hope that this situation may improve.

Click here to watch the video of this story

Click here to watch the Press Conference with the Crawford & Mills families. (Caution: have your tissues nearby)
Click here to watch video of the governmental session

These Canadian families started the Improve the Life of Children (ILC) foundation and gathered more than 8,000 signatures on a petition. EDS Awareness first posted an article about this situation in 2013: Click here to read it.

erika-crawford

Erika Crawford, left, with Brooklyn Mills at Queen’s Park

Two young women with a debilitating rare disease known as EDS are finally getting help from Ontario’s Health Ministry 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, particularly because they felt that they weren’t able to receive the services they needed in Ontario, and that they felt let down,” Hoskins, a family doctor told reporters.

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.

After meeting with 22-year-old Brooklyn Mills of Oakville and Erika Crawford, 20, of Brantford, Hoskins said he invited them to sit down with him and the working group to tell their stories.

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 the parents talked of “financial ruin” from maxing out their credit cards and re-mortgaging their houses 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.

They are seeking reimbursement from the Ontario Health Insurance Plan.

“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.

“As a parent myself, it was extremely difficult to hear.”

The recommendations should “give confidence to these families that they are being respected and that these brave individuals are receiving the care that they deserve and require, whether that care is in Ontario or elsewhere.”

Progressive Conservative MPP Michael Harris (Kitchener-Conestoga), who is advocating for the families, said action from the Health Ministry is long overdue.

“They’re quick to hand out the dollars,” he said in reference to millions in payouts the government has made to teacher unions and school boards to help with the costs of bargaining new contracts, “but they’re making these families jump through hoops.”

He repeated calls for the government to have a better strategy for dealing with a wide range of rare diseases so families don’t have to keep coming to Queen’s Park with “cap in hand” to get help.

Hoskins said the government is creating another special committee to review applications for out-of-country funding for pediatric surgery, in addition to the existing application process.

Canadians seem to be getting more attention from the government, which will hopefully translate into coverage for their Ehlers-Danlos Syndrome treatment.

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