Saturday, March 12, 2005

dear Ken ...

Dear KEN or whomever will assist me,

RE: Zenapax

As I told Sheryl at the MS Clinic, thank you so much for helping me understand the Canadian medical system as it pertains to obtaining a off-label prescription for similar break through treatments, and also what the criteria is for Trillium approved funding for Antagren.

I don't want to appear unreasonable or too pushy with the specialists but I do want the opportunity to present my case and perhaps even an appointment to see Dr. Paul O'Connor or comparable neurologist in person. I really need an advocate to believe it is worth a try. I understand Dr. Lesley Lee of Sunnybrook's MS Clinic may also be permitted to write the off-label Rx. Thank you for assisting me in seeing him. I really believe it's a faster and more feasible route given Dr Ursel's stance.

Fact: After years of deterioration with MS and trying every known treatment, up to Chemotherapy, my situation continued to worsen. For the first time in 10 years I am suddenly seeing health and strength improvements every day.

The first miracle for me was discovering how much of my condition appears to be related to some very severe and chronic food allergies.
After less than 6 months on a very restricted diet and rigorously going to the pool and gym to work out I am seeing improvements that I never imagined possible. I can kick my legs, feet and tread water as never before.
The shaking of my hands and arms has significantly diminished. My complexion and skin color have dramatically improved. All of my family, friends and the health practitioners including my nurse who I come into contact with are amazed by the changes in my condition. This is no exaggeration.

Fact: Zenapax (like Antegren. is the best and most promising medical treatment that as been available to MS patients. The clinical are all very encouraging and the anecdotes are also very positive. I have met a woman who was in a wheel chair for 13 years, who is now walking and playing golf. She was able to get on the medication early in the US clinical trials. This is a miracle. She also had SP MS

I am not suggesting that I am expecting a miracle or to play golf. What
I am hoping for is to somehow find a way to get on Zenapax in the hopes of some improvement and a slightly better quality of life.

I am 100% committed to this; how can I get the support of the Canadian MS

1. Obviously, I would hope to get approved for the drug in Canada
–––and also get funded by the Trillium program.
2. If funding is out of the question I will find a way to pay for
the drug with the help of my family and friends.
3. If I can’t get the prescription in Canada then I will attempt
to look to the US for treatment (which will be more expensive and very cumbersome)

Over the last few years, I really have not had many glimmers of optimism about my condition, prognosis, or quality of life. For the first time I am now seeing such remarkable improvements with just the discovery of my food allergies and a new diet regimen.

I want to try Zenapax. I am committed to finding a neurologist who will become my advocate and prescribe the medication to me. I now have some optimism for my outlook.

I appreciate your help and advocacy.

Thanks, Steven.

I’m attaching third- party endorsement of my progress outlined in a letter from the City of Toronto Rec. Center.


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