TARLOV CYSTS - Canada the misinformed!!!

The rare diagnosis of Tarlov Cyst Disease poses significant challenges in the realm of medical care. Most Canadian Medical Practitioners lack the expertise to accurately diagnose, treat, or manage this condition. As a result, patients often find themselves navigating a healthcare system ill-prepared to address their needs, leaving them feeling lost, scared, and isolated. This lack of medical understanding perpetuates feelings of misinformation and uncertainty among Canadian patients. Through this blog, I aim to share my journey of navigating the Canadian Healthcare system while living with multiple rare disease diagnoses. I have dedicated myself to learning as much as possible about my rare diseases, hoping that my experiences and hard-earned self-education can support and guide others on their own rare disease journey. Together, let's shed light on the challenges those living with rare diseases face and work towards a more compassionate and informed healthcare system.

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Thursday, March 31, 2011

OHIP Application

So today was the deadline for applying for Out of Country Care coverage; that is, it's the last day that applications received before April 1st will be adjudicated under the new regulations.

So I did it. I managed to get the application faxed in today and now it's just a matter of wait and see.

Wow.... knowcks the wind out of me just to think, "what if I do get approved?" Am I really ready?

One day at a time... that's all I can do is take it one day at a time... I'll let you know how simple (doubtful), or our difficult (more likely) the process goes.

Wish me luck!

Wednesday, March 30, 2011

OHIP Changes to Out of Country Care

On Friday May 11th, 2011 The Globe and Mail reported on a case where an Ontario Tarlov Patient had won an appeal to be covered under OHIP's Out of Country Care (OOC) program.


The news story informed readers of the four day winning battle Rose had fought and also provided comments from a local, Ontario Neurosurgeon, Dr. Charles Tater who stated, "Rose could be treated in a timely fashion in Ontario. He had treated five patients over his career of nearly 50 years and he believed other neurosurgeons treated a similar number of cases."


Lawyer Perry Brodkin commented on the new changes saying, “This legislation makes patients guinea pigs because they’re not going to get the foremost expert in the world,” He also added that, “Under the new rules, that surgeon may have never performed the surgery or may have performed it only once.”


The news article and the suggestion of new rules caused a wave of concern to those diagnosed with symptomatic Tarlov Cysts. We were all worried about how those changes may prevent Tarlov Patients, like Rose, from receiving experienced treatment in future.


Neurosurgeon Frank Feigenbaum of the Research Medical Center in Kansas City, who operated on Rose’s Tarlov cysts, said in a letter entered as an exhibit before the appeal review board that the surgery is extremely intricate, complex and a “very scarce commodity.”


Dr. Feigenbaum also stated, “There are only a few surgeons in the world with experience and proven good outcomes with surgery for these rare giant cysts who would even attempt this surgery,” he wrote. “I am one of those surgeons.”


Rose's application for OOC had been refused on application, but after a four day appeal Rose's application was approved.


Reta Honey Hiers, president of the Tarlov Cyst Disease Foundation, testified during the appeal saying, "no Canadian physicians were on her list as having expertise to operate on such cysts; the one Ontario surgeon that was listed had asked to be removed." Which leaves many to wonder where these program changes may take future patients in need of experience to treat this rare diagnosis.


In an email received today from Perry Brodkin, he supplied a link which I've attached to this post that will bring you to the new list of amendments. 

(Click on the Post Caption in RED at the top of this post to be linked directly to the E-Laws site.)

However, according to Mr Brodkin one question remains, "At this time the major issue is whether the changes apply to a person who has appealed to the Health Services Appeal and Review Board, but has not yet had his or her hearing before the Board. The changes do apply to a person who has not had an Ontario physician complete and submit to OHIP a Prior Approval Application for Full Payment of Insured Out-of-Country Health Services before April 1, 2011."


In response to Mr. Brokins question the Ministry of Health and Long Term Care responded with the following.
"Any Health Services Appeal and Review Board (HSARB) appeals received prior to the regulations taking affect (April 1, 2011) will be adjudicated based on the old rules. Any application for Out-of-Country (OOC) health services approvals received prior to April 1, 2011 will be based on the old rules. Any application denied based on the old regulations and then appealed to HSARB will be adjudicated based on the old rules (in other words:  as long as the application was received prior to April 1, 2011 to the General Manager of OHIP or to an OHIP Office, any related HSARB appeal to that decision will be based on the old rules)". They also added, "All applications are date received stamped upon receipt; therefore, even if the application is reviewed after April 1, the review/appeal will be based on the old rules".
The battle for expert care is far from over and if you are in need of further information, guidance or legal support, please contact:
Perry Brodkin
Barrister & Solicitor
515 Rosewell Avenue, Suite 304
Toronto, Ontario M4R 2J3
Tel: (416) 482-3482
Fax: (416) 484-8290
E-mail: perry.brodkin@rogers.com
(all quotes in this posting were taken from the Globe and Mail article, and also from direct email contact with Mr. Brodkin. For that I am grateful. There are still a lot of professionals willing to help us fight for what we require as patients. I am grateful for their ongoing support.)

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