The ministry finally committed to funding the neurosurgical care we fought so hard to secure. I am speechless knowing that patients like me will no longer be left in the dark when our bodies fail us. We need to stay vigilant to ensure they follow through, but today we celebrate …
February 20, 2017
Final supporters
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.
Sincerely,
Dr. Adena Gutstein
MD, CCFP-EM
Updates
Reached 500 supporters
December 11, 2016
December 9, 2016
I have been spending my nights reading through your personal stories and they are a painful reminder of why this fight is so necessary. My own health battles are hard enough to navigate but knowing so many of you are facing this same neglect while waiting for basic care keeps me pushing forward.
Reached 100 supporters
December 8, 2016
December 7, 2016
Watching the count rise reminds me that I am not the only one living in constant physical pain while waiting for the province to acknowledge our reality. Please send this link to a few people in your circle so we can hit our goal and force the ministry to look at our faces instead of just ignoring our paperwork.
176 Comments
I was 47 before I had a diagnosis of Ehlers Danlos Syndrome with symptoms starting at age 17, 30 years is too long. I think that alone speaks for a need for better knowledge of EDS in the medical establishment.
My daughter has EDS and we live in Victoria. We have to travel to Vancouver and Edmonton to see specialists who know about EDS. We need more awareness in the medical community and better access to treatment.
EDS patients in Canada deserve to have access to the right doctors and surgeons. If they are not available in Canada, then the government should provide financial support so that patients can be treated properly in the US
I want to contribute to society and my immediate community, I love working and the cost of keeping me down is economically nonsensical and socially negligible. Thank you for bringing up the fiscal irresponsibility of the current strategy.
I had to have neurosurgical complications of EDS treated in the US at great expense to my family. I feel abandoned by my healthcare system and my province. I feel frightened of what will happen to me and my affected child should we need neurosurgical care in the future.
Please review the neurosurgical needs of EDS patients. It may be a rare disease but EDS sufferers deserve the same consideration as other citizens.
Quebec Health Care system needs to get up to date with the rest of the country, and Canada needs to do more for rare diseases in general. Both my daughter and I have been diagnosed with EDS, I have already had a Chiari Decompression surgery and back surgery and am still plagued with several other symptoms, yet the doctors are still ignoring these symptoms and not doing the necessary tests! It has been over 5 years that I am fighting the medical system and still waiting for proper tests and many of the health care professional either never heard of EDS, ignorant to it, or simply just don't know enough about it. We need to educate our health care professionals more and provide more services in the health care and public sectors......
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The ministry finally committed to funding the neurosurgical care we fought so hard to secure. I am speechless knowing that patients like me will no longer be left in the dark when our bodies fail us. We need to stay vigilant to ensure they follow through, but today we celebrate …
February 20, 2017
Final supporters
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.
Sincerely,
Dr. Adena Gutstein
MD, CCFP-EM
Updates
Reached 500 supporters
December 11, 2016
December 9, 2016
I have been spending my nights reading through your personal stories and they are a painful reminder of why this fight is so necessary. My own health battles are hard enough to navigate but knowing so many of you are facing this same neglect while waiting for basic care keeps me pushing forward.
Reached 100 supporters
December 8, 2016
December 7, 2016
Watching the count rise reminds me that I am not the only one living in constant physical pain while waiting for the province to acknowledge our reality. Please send this link to a few people in your circle so we can hit our goal and force the ministry to look at our faces instead of just ignoring our paperwork.
176 Comments
The ONE neurosurgeon in all of Canada is now unavailable.. Time to cover out of country care for EDS. Better yet enforce awareness and training of new and existing physicians. The typical medical school curriculum spends less than a day learning about ALL connective tissue disorders.
I was 47 before I had a diagnosis of Ehlers Danlos Syndrome with symptoms starting at age 17, 30 years is too long. I think that alone speaks for a need for better knowledge of EDS in the medical establishment.
My daughter has EDS and we live in Victoria. We have to travel to Vancouver and Edmonton to see specialists who know about EDS. We need more awareness in the medical community and better access to treatment.
EDS patients in Canada deserve to have access to the right doctors and surgeons. If they are not available in Canada, then the government should provide financial support so that patients can be treated properly in the US
I want to contribute to society and my immediate community, I love working and the cost of keeping me down is economically nonsensical and socially negligible. Thank you for bringing up the fiscal irresponsibility of the current strategy.
I had to have neurosurgical complications of EDS treated in the US at great expense to my family. I feel abandoned by my healthcare system and my province. I feel frightened of what will happen to me and my affected child should we need neurosurgical care in the future.
Please review the neurosurgical needs of EDS patients. It may be a rare disease but EDS sufferers deserve the same consideration as other citizens.
Quebec Health Care system needs to get up to date with the rest of the country, and Canada needs to do more for rare diseases in general. Both my daughter and I have been diagnosed with EDS, I have already had a Chiari Decompression surgery and back surgery and am still plagued with several other symptoms, yet the doctors are still ignoring these symptoms and not doing the necessary tests! It has been over 5 years that I am fighting the medical system and still waiting for proper tests and many of the health care professional either never heard of EDS, ignorant to it, or simply just don't know enough about it. We need to educate our health care professionals more and provide more services in the health care and public sectors......
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The ONE neurosurgeon in all of Canada is now unavailable.. Time to cover out of country care for EDS. Better yet enforce awareness and training of new and existing physicians. The typical medical school curriculum spends less than a day learning about ALL connective tissue disorders.