And tell Big Pharma’s MS Society enablers to quit pushing these questionable drugs, too!
I was officially diagnosed with Multiple Sclerosis (MS) in 1987. Shortly after some pioneering researchers dared challenge the myth that exercise worsens MS and proved that exercise is therapeutic for the 2/3rds of MSers (people with MS) that have benign or mild MS. Then the Mayo Clinic produced a follow up study of MSers followed for over a decade, showing that the same 2/3rds of MSers are not severely disabled by the disease, if at all. I could see the path for me, and kept bicycling and skiing through the 1990s and beyond, embarrassing the MS Society by riding their MS150 and TRAM as well as several walks and other events.
Then, the elephants that are Big Pharma entered the room… A bunch of new drug treatments for MS were OK’d by FDA. I read the studies of the drugs effects with interest, but wondered why anyone would take them- None showed any effectiveness at slowing progression of disability at the time, and even now, decades later, the most effective of the drugs shows a barely detectable effectiveness, similar to the difference between walking with a cane or without. But you were often more certain to get side effects, ranging from nuisances to life threatening stuff. One would think these questionable drugs would have died a quick death in the marketplace.
But the worldview of many MSers and the MS Society is of a disease that will put MSers in the dreaded wheelchair, and in that mood of desperation any hopeful drug is worth trying. So MSers demanded the drugs, but insurance companies were reluctant to pay for such questionable drugs. So I don’t know who leaned on who, but the MS Society’s medical advisors gave their blessings to the drugs, and went so far as to prescribe that everyone with MS take them.
‘Bout that time I told Minnesota MS Society head Willard Munger Jr. (yup, son of progressive Representative Williard Munger from Duluth) that if the MS Society let them, the drug companies would “own them”. Will Junior was an innovator, father of the MS150 rides and a bunch of other great ideas, but within a couple years he was out of the MS Society, the National MS Society had taken over their uppity Minnesota chapter, and Big Pharma all but owned the whole thing.
Two decades later between 50% and 85% of the 400,000 to 500,000 MSers in America are on the so-called “disease modifying drugs”(DMDs), depending on whose numbers you believe. And despite several new DMDs being introduced prices have increased rather than decreased like they would in a normal market. Multiply that 200,000 to 400,000+ MSers on the drugs times their $50,000 to $100,000 a year cost, and we’re spending around 20 Billion $$$ a year on drugs that accomplish little or nothing, unless you’re a Big Pharma exec. $20,000,000,000 a year would provide health insurance for 2 million more americans, or reduce premiums by $50 a month for every american.
So 30 years after confirmation that I had MS, I signed up for an MS Ride to give me some motivation to stay in shape. Paid my entry fee which covers all the MS Society’s overhead, then tried the MS Society’s new fangled online fundraising… With no success. So I asked the MS Society for a waiver of the $300 fundraising minimum, with no success either. I also gave them a piece of my mind about how they’d sold out to Big Pharma… Suddenly my e-mails were being answered by a fundraising higher up from the national office rather than the local ride organizer. Then after offering me only a refund, she quit talking to me! I reluctantly surrendered, then checked the Ride’s web page and found they’d dropped the minimum pledge from $300 to $100 after I’d withdrawn! Heck, I coulda swung $100...
Not surprising, given that the ride was a fundraising disaster, cutting the minimum pledge more than doubled the number of eligible riders from around 30 to 70 or so. But what amazed me is how vicious the MS Society has become, especially to a person with MS- Decades back I and the MS Society had disagreements, but we respected each other and kept the lines of communication open. Today the MS Society is so in bed with Big Pharma that any heretic that dare challenge the myth of the MS “Disease Modifying Drugs” is promptly ejected.
It’s time to tell the MS Society to quit recommending questionably effective drugs just because they buy damn near half the ad space in their magazine. It’s time to tell Big Pharma to come up with effective and cost effective drugs. And it’s time to tell our insurance providers and public health care funders to quit paying for these damn near useless drugs. We’re already spending a sixth of GNP on “health care”, and our economy can’t stand to pay any more!