We have all heard and read a lot about the CCSVI procedure for people stricken with multiple sclerosis.
We are hearing and reading that it provides positive results for a large number of the people with MS.
As my wife was diagnosed with MS six years ago, I thought I would provide a few insights to your readers.
We recently traveled to Cabo San Lucas, Mexico for the procedure. The actual procedure was performed on Sept. 12, 2010.
It took 1.5 hours on the operating table followed by two hours in the recovery room.
We then hopped into a cab to take the three-minute ride back to the hotel.
During the time in the recovery room, my wife regained the feeling in her left hand.
The next day as we were walking to the restaurant arm in arm, she asked me if she was walking too fast for me, as we always walk arm in arm to ensure no trips or falls will occur as her balance was not the best.
Wow! Next thing we noticed was that her energy level had increased.
She no longer required her daily nap.
Here we are almost four weeks later.
Her feeling in her hand is still there. Her energy level is still better than it was.
When she walks she has not had the right foot drag.
Now this procedure did not bring her back to her previous levels of mobility and energy (pre MS diagnosis) but it sure has put a huge smile on her face.
Now I would like to take you down the path of costs regarding MS.
After being diagnosed with MS, the neurologist will give you information and basically suggest that you start on a drug called an interferon.
This drug is injected either once a week or daily, and is supposed to slow down the progression of MS.
The neurologist will tell you nothing is 100%, however they have clinical results that a percentage of patients (40 to 80%) have shown a slow down in the disease.
The cost of this drug is approximately $28,000 per year.
As we live in Alberta, we are somewhat lucky as the Alberta government picks up the majority of this cost.
We had to enroll in the Blue Cross non group plan and pay $118 per month to receive this drug.
Now my wife was on this drug for six years, that equals $168,000 of every Albertan’s tax dollars at work.
Along comes this new procedure only currently available in other countries at a personal cost to the patients of between $15,000 and $25,000.
Now the procedure is not guaranteed to help every person with MS either, just like the drug which the vast majority of patients are taking.
However, out of the six people which were on our flight to Mexico for the procedure five out of six had some positive results which vastly improved each of their qualities of life.
These improvements were noticeable directly after the procedure!
It works. My wife has decided to stop taking the $28,000 per year drug. It may well turn out that she will go back on the drug at some time once more is known and learned, but again nothing about this ugly disease is 100% except that it is very nasty.
Incidentally quite a lot of the patients have decided to stop the drug after the procedure.
So now we are saving the tax payers $28,000 a year.
Although we had to pay $15,000 out of our pockets, actually the money is not even in our pockets. It is on a credit card.
Again nothing about this disease is known for sure, both causes and cures.
What I have seen for sure is that my wife has improved her quality of life in a very dramatic way.
So now I read that a proposed one million dollars is available to seven patients for clinical trials in Alberta.
By my math that equates to approximately $140,000 per patient.
That same one million dollars would pay for 66 patients to go to Cabo for the procedure. I would suggest that maybe then neurologists find the time to go down to the Calgary airport and interview the six patients (each one which is currently paying $15,000 out of their own pockets) every Thursday and Sunday getting on and off the flights to and from Cabo.
They will be amazed!
I do not think it will cost the tax payers one million dollars for them to find out that this procedure is safe and it works.
Alberta has the diagnostic tools needed; we even have the surgeons required for the procedure.
The MS patients in Alberta do not have the time it will take to have this clinical trial completed. At the end of the day we are talking about a very safe and simple procedure which will help most patients.
Not unlike other diseases and medical problems, no one solution works for everybody.
Jens Carr
Sylvan Lake