Each year for the past dozen or so years the Atlantic Division of the MS Society hosts a fundraising Movie Night at Empire Theatres Bayer's Lake. In the past 9 years I've hosted most of them. (I had to skip one year because of what turned out to be a kidney stone, though at the time I thought it was MS related)
This year the event is being held the first week of February and yours truly will be there again. So I just wrote up my little spiel and am posting it here. The drugs and stem cell transplant that I mention are from a news report broadcast last night on the CBC. I will put in the link to CBC - you'll have to search for the video report as I can't link directly to it.
The little girl I mention is written up in the latest MSIF mailer and I will link to them.
Recent reports indicate positive results on new drugs and procedures to treat MS. One of these procedures is a stem cell transplant. Doctors take stem cells from bone marrow and save it. Then the patient undergoes vigorous chemotherapy to destroy their current immune system. Kind of like crashing a computer. Then they implant the stem cells and watch the immune system rebuild. In effect they reboot the computer.
Sounds simple. Only 18 people have undergone this procedure in the country. Most are doing well with no relapses since their transplants. One person died. How desperate must you be, to be willing to sign a consent form that tells you the risk of death from a procedure is very real?
Drugs are VERY expensive. This little package, one dose of my medication taken once a week, is approximately $500. Lucky for me, the provincial government is covering me on that one. Until last year, Newfoundland did not cover its MS patients unless they were on social assistance. People were forgoing treatment that could help them because they couldn't afford 20-26 thousand dollars a year for meds. People were divorcing and living separately from spouses so one could qualify for assistance and get the drugs.
There are children as young as 2 being diagnosed with MS. A little girl in Ontario, Caitlin, was diagnosed at 8, and is currently campaigning for the MS Society. She says she tells her story because she hopes it will make people donate for research to find a cure and that no other kids or adults will have to live their whole lives with MS.
Sounds like a plan to me.