Tuesday, January 22, 2008

MS Movie Night

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 CB
C - 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.

4 comments:

Kim said...

Shauna, just the other night the hubby and I were talking about people who decide to divorce to be able to operate as "singles" for tax and medication program purposes. Isn't it terrible that we live in a society where we have to consider legal divorce in order to pay for our meds? Great piece here!

Kim

Shauna said...

Kim,

Thanks for your comment. I agree, it's terrible.

When I was 12 we lived in Newfoundland for a time; it was 1975. I remember hearing a story on the radio about a couple who had been married something like 40 years who were legally separated and considering divorce because their combined incomes (as retirees) couldn't support them. But as singles their combined incomes could. As a 12 year old I found that quite distressing.

Luckily, with the aid of the MS Society, and support from people across the country, the Newfoundland government agreed to cover the costs of the ABCR drugs like the rest of the country. It was quite the campaign actually.

Shauna

BRAINCHEESE said...

I LOVE Canada...in fact, when MY "govmet" here in the States sells me out, I'm coming YOUR way! At least you have options at healthcare, even if they aren't always prompt.

Linda D. in Seattle

Shauna said...

Linda,
I'll make room for you at my place....lol.
I really can't complain about our healthcare system. I've had very good experiences with it. Part of that has to do with the horseshoe up my butt.
S.