The Canada Health Act requires provinces to fund medically necessary treatment for Canadians. Yet each year a growing number of people in Ontario suffering from Ehlers Danlos Syndrome (EDS) have to seek out-of-country treatment at their own expense because doctors in Ontario don’t have the knowledge or skills to understand EDS symptoms and perform the required delicate and complicated surgeries. Sadly EDS victims who can’t afford the expensive treatment outside of Ontario are forced to suffer a deteriorating existence and risk irreversible tissue and nerve damage.
EDS is characterized by defective connective tissue, which holds our joints, organs, blood vessels and skin in place. People with EDS repeatedly suffer severe dislocations, chronic pain, blackouts, nausea, migraines, lost vision, tremors, bowel and bladder issues, heart problems, mobility issues, digestive disorders, severe fatigue and many others resulting in little or very poor quality of life. For children suffering from this hereditary condition, the only form of treatment currently provided in Ontario are leg braces and/or a wheelchair. Our medical services are even unable to properly diagnose symptoms that may indicate a tethered cord or any other co-morbid conditions.
The Ontario Ministry of Health and Long Term Care has stated that there are doctors in Ontario, in particular neurosurgeons, who can perform surgeries on EDS patients. In actuality, EDS patients have been referred repeatedly by doctors here in Ontario to experienced surgeons in the United States for diagnostic testing such as Standing MRI’s. When surgery is recommended, the Ontario referring physicians fail to identify an Ontario neurosurgeon willing or able to see and treat the patient and thus the patient must return to the United States for his/her life saving surgery at their expense.
We, the undersigned, petition the Health Minister of Ontario to provide the names of Ontario neurosurgeons who have the skills and experience with EDS and can perform surgeries on EDS patients with equivalent or identical skills to the EDS neurosurgeon specialists in the United States. Alternatively, for those patients whose treatment is available only in the United States, we ask the province to provide full funding for out-of-country treatment, thereby meeting the Canada Health Act’s requirement to afford equal access to medical treatment for patients, regardless of their ability to pay for out-of-country services.