Ontario Health Ministry Urged to Pay for Out-of-Country EDS Surgery

Ontario continues to have issues with uninformed doctors regarding Ehlers-Danlos Syndrome. Many EDSers, are coming to the US for medical care. This is an article about Steve Clark’s drive towards getting more support for those seeking medical care and more EDS education for doctors in Ontario.  The article was written by Susan Gamble and published in the Brantford Expositor.

Steve Clark

Steve Clark

“Tory MPP Steve Clark is challenging the Ontario Health Ministry to reconsider its refusal to fund U.S. surgeries for EDS patients, such as St. George’s Erika Crawford.

Clark is conducting a phone meeting with Health Minister Deb Matthews on Friday to advocate for a constituent in his Leeds-Grenville riding who has Ehlers-Danlos syndrome.

On Monday, Charlie Smith, 22, was operated on by the same doctor in Maryland who performed Erika’s operation. On Tuesday, the family posted photos of Smith walking – with assistance — in the hospital corridor.

Smith’s fight with EDS was so bad that, for the past nine months, if he tried to stand, he had a seizure or passed out.

Clark said that the Health Ministry is pushing EDS patients toward Ontario neurosurgeons, saying the surgery can be done in the province. But those with EDS disagree.

“The greater EDS community, and I believe there are about 100 of them here in Ontario, have been unable to find anyone – and I mean anyone – in Ontario to be able to do the surgery,” Clark told a Brockville radio station.

“That’s why EDS patients like Charlie and Erika in Brantford had to go to Maryland for their operations.”

A Health Ministry spokesperson said Wednesday that EDS patients are treated in Ontario but some patients are going to the U.S. because “services are being advertised as specific to EDS.”

EDS patients and the foundation that supports them dispute that, pointing to the dangerous complications EDS patients tend to face.

The ministry noted that funding for out-of-country services are reviewed on a case-by-case basis and can even vary between two people with the same diagnosis.

The insistence on prior approval before getting out-of-country surgery is an “effective safety valve” in the health-care system and 97% of the applications OHIP receives are approved, according to the ministry.

The ministry continues to insist – contrary to what several EDS families say – that there are highly qualified and experienced neurosurgeons who are experienced with this procedure and have operated on EDS patients.

In fact, the ministry spokesperson said Ontario neurosurgeons perform “the exact same type of neurosurgery” as the U.S. doctor.

The Crawfords dismiss that, saying neither they nor the Smith family were able to find any doctor willing to operate. Plus, they point to the fact that the Maryland surgery results in the patient left with far more mobility due to a special technique that’s been perfected by the American doctor.

The Crawfords are pleased that Clark is speaking out for EDS sufferers but they wonder why their MPP, Brant Liberal Dave Levac, isn’t doing the same thing.

“We just want the same support as Charlie’s getting,” said Darren Crawford this week.

Michelle Crawford said her family asked for and received direction from Levac’s office in September. But since then Levac hasn’t been involved in the case.”

This reflects the continuing struggle in Ontario to get proper health care for those with Ehlers-Danlos Syndrome.

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