Monday, June 18, 2012

Research Study Update

Chris had his Multiple Sclerosis Research Study appointment today. This is the appointment where they get Chris to do a bunch of tests to determine the progression or improvement of his disease.

We had good news and bad news.

Good news. Chris is still doing great. No signs of any disease progression, which is the same as all other transplant patients, and small signs of improvement. He had an EDSS score of 2.0 at his last appointment in December, and one neurologist even considered giving him a 1.5. His official score is still a 2.0, but in my mind he is more like a 1.75 (not a real score, but since he was borderline I think they need have a bigger range).

Bad news: Since the MS Society of Canada did not renew its grant for its long-term research study, the formal research study will end this year and this was Chris' last research study appointment. We were assured that they would continue to apply for funding, and they would continue to see Chris to track his progress, but the research study portion will end.

It is really disappointing news seeing a procedure that has been so successful (all patients have seen a halt in their MS progression) lose funding. Knowing the long-term effects and benefits of this procedure is so important and it really seems like such a shame that this will longer happen. For us, since we live in Ottawa, this will not make that big of a difference. Chris will continued to be monitored. However,patients that need to travel to Ottawa from across Canada, including PEI and British Columbia, will now need to travel on their own dime if they want to continue to see Dr. Freedman and the MS transplant team.

We also found out that the MS research team also did not get funding for a different kind of stem cell therapy that uses the patient's own mesenchymal stem cells. The benefits of this therapy is that it does not require the patient to undergo intensive chemotherapy and is much safer than the transplant. There have been several clinical trials of this therapy in Europe, but unfortunately, it is not being researched in Canada.

What makes this so frustrating is that while these research studies are not getting funding, the MS Society and provincial governments are throwing tons of money at CCSVI, which has had nowhere near the success rates. I can completely understand why MS patients want CCSVI to be the cure, and at one point Chris was on a waiting list to get the veins in his neck scanned to see if this was the cause of his MS.

However, after reading so many studies that do not support this treatment having any lasting benefits, including the Newfoundland study this month, and hearing from other people through our blog who have underwent the procedure and had limited or no improvement, I am convinced that it is not the "liberation procedure."

Okay, my rant is over.

Back to the good news. Chris is continuing to impress the MS research team with how well he is doing post-transplant. And we will continue to update the blog with his progress, with or without the continuation of the research study.

*Editor's Note: If you are extremely wealthy person reading this blog and wondering what to do with all of your money, I would suggest contacting and donating all of your money to the Multiple Sclerosis Research Unit at the Ottawa Hospital.