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Ehlers Danlos Syndrome and access to necessary health care

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Eric Hoskins

Ministry of Health and Long-Term Care

10th Floor, Hepburn Block

80 Grosvenor Street

Toronto, Ontario

M7A 2C4

Re: Ehlers Danlos Syndrome and access to neurosurgical care

Minister Hoskins,

I am writing both as a physician and a patient suffering from the neurosurgical complications of Ehlers Danlos Syndrome.

I want to commend the effort that has been put forth by the provincial government in organizing and financing the EDS clinic. Myself, and other countless EDS patients are anxiously awaiting assessment in this clinic. We are hopeful it will be a fundamental step toward implementing timely access to appropriate health care for this population.

In spite of all this, I have some concerns moving forward, especially in light of recent events. I am afraid the panel of experts who were assembled in November 2015 did not adequately address the neurosurgical needs of this population. The proposal put forth to the ministry of health merely re-iterated the same algorithm that has been used in Ontario for a decade, and has repeatedly demonstrated disregard for human dignity and life. The only reason this issue was marginally addressed was because a previous surgeon took it upon himself to treat this population. Given that he will not be in the equation for the foreseeable future, I am calling your government out on the ineptitude.

From what I know, OHIP does not fund procedures or surgeries that are not considered medically necessary. I believe OHIP has re-imbursed two different neurosurgeons for their surgical care of the EDS population in the past 5 years. These surgeries were carefully considered after appropriate work-up using advanced neuro-imaging modalities, many of which are not available in this country. I trust that the neurosurgeon taking over our care will use the same diagnostic workup and the same criteria for surgical intervention, before stamping an EDS patient in dire neurosurgical need as “medically unnecessary”.

Simply denying that a problem exists is not an effective way of dealing with the problem. This has been your strategy since you got tangled in this controversy over one year ago. It was the strategy used by your predecessor Deb Matthews.

However, this strategy turns a blind eye to unnecessary and treatable suffering; it disregards young adults with brainstem compression dying in our ICU’s; it ignores three year old children in wheelchairs who would otherwise be ambulatory; it allows competent emergency physicians such as myself to remain disabled and unable to work for years on end. This strategy sentences patients to a lifetime of pain, disability and life threatening complications for absolutely no reason.

I fear that you are reverting to this strategy once again, based on your statements in the media and during question period.

We both know this controversy is simply a fight amongst neurosurgeons. Let it be a fight that remains in that realm. It does not need to be one that threatens the lives of Canadian citizens or calls out our province on infringement of the Canada Health Act.


Dr. Adena Gutstein


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