I sat down for breakfast yesterday, reading the daily paper (more like perusing actually) and then the National Multiple Sclerosis' Michigan chapter newsletter. These two seemingly unrelated choices of reading material had a whole lot in common yesterday, though, and they caused my blood to boil and to get my 'Irish up".
One of the obits in the paper was for a 51 year-old woman- her family was requesting donations be sent to the MS Society. (I confess to now reading the obits - something I used to believe only old people read. But since I'm NOT old and I'm reading the obits, I guess I was wrong!) Just last week, I learned of another person with MS that had died at a young age of 50-something.
In the MS newsletter, a rather slim edition filled mostly with fundraising events, I read about the 'promising research' partially funded by the MS Society. I wanted to scream!
"In 1993, Betaseron was released to market," the article began, "as the first disease-modifying therapy for multiple sclerosis. With the approval of Tecfidera in March, we now have ten disease modifying therapies (three of them oral medications) to treat relapsing forms of MS - and more on the horizon." To the average reader that seems like great news - that there are now so many fabulous options for those with this disease. Note that three of the new 'therapies' (I prefer to call them what they are, drugs.) are oral so that means that seven are given either by injection (daily, a couple times a week or weekly) or by infusion at a clinic or hospital on schedule ranging from monthly to quarterly.
Why this particular article made me lose my temper and nearly made me lose my breakfast is really not complicated. When I was diagnosed with MS 21 years ago, my neurologist advised that a cure was on the horizon. "I can see, with all the new research, a cure will be found in the next five years," he said. A cure wasn't found and hasn't been found but two years after my diagnosis, in 1993 Betaseron was approved. And that, I believe, is when the focus from finding a cure for MS went instead to finding more drugs to stall the progression of MS. These drugs cost $20,000+ a year. And that's not chump change. And now with a diagnosis, neurologists are prescribing one these drugs to halt the progression.
Eighty percent of all people with MS have the relapsing-remitting form of the disease - these are the people the pharmaceuticals companies are investing their (and the MS Society's) dollars on. The remaining people with MS, like me, have some form of progressive MS. Mine is called secondary progressive; after having relapsing-remitting for 15 years my disease has now progressed to where I have symptoms all the time and rely on a cane to walk. In the newsletter, they addressed the research into 'treatments' for progressive forms this way - the Society plans to do all that it can to speed up development of these treatments. To me, that meant one thing.
Follow the money.
Why would any company be interested in eradicating MS when there is so much money to be made from stalling it's progression. Simple math - at $20,000 a year times 15 years, that's $300,000 per patient. And even though my disease has progressed I am still prescribed one of these 'therapies' for relapsing remitting (because they are now researching it's efficacy for progressive forms). So, in short, I am worth a boat load of cash to a pharmaceutical company. Hell, I've paid some exec's salary for a year.
In the meantime, while young people are dying from complications related to MS, the research continues on how to keep this money train of big pharma on track. And new people are diagnosed all the time. And I worry, because of the hereditary factor of this disease (both of my sisters also have this disease) and my children and niece and nephews are nearing the age of onset. And the research into a cure has stalled.
But I am only one voice. And the issue seems so much bigger than what one voice can call attention to. I sent an email to the Society's medical director a few years ago, complaining that most the research updates were on new drugs and that most of the ad space in the publication were from the very companies the Society should be watch-dogging on behalf of the people with MS. I received a curt response that I then copied to the then executive director of the Society - and she responded quickly with an apology and public -relations like response to my complaints.
I guess I should quit reading their publications. I do now advise that if you're looking to donate money to help MS, it's best to give it to the MS Foundation. They give grants directly to people with MS to help improve their lives and have programs that give cooling devices and adaptive technology to those that need them. They don't seem to support big pharma. That's my Pollyanna spin on this dismal topic.
One of the obits in the paper was for a 51 year-old woman- her family was requesting donations be sent to the MS Society. (I confess to now reading the obits - something I used to believe only old people read. But since I'm NOT old and I'm reading the obits, I guess I was wrong!) Just last week, I learned of another person with MS that had died at a young age of 50-something.
In the MS newsletter, a rather slim edition filled mostly with fundraising events, I read about the 'promising research' partially funded by the MS Society. I wanted to scream!
"In 1993, Betaseron was released to market," the article began, "as the first disease-modifying therapy for multiple sclerosis. With the approval of Tecfidera in March, we now have ten disease modifying therapies (three of them oral medications) to treat relapsing forms of MS - and more on the horizon." To the average reader that seems like great news - that there are now so many fabulous options for those with this disease. Note that three of the new 'therapies' (I prefer to call them what they are, drugs.) are oral so that means that seven are given either by injection (daily, a couple times a week or weekly) or by infusion at a clinic or hospital on schedule ranging from monthly to quarterly.
Why this particular article made me lose my temper and nearly made me lose my breakfast is really not complicated. When I was diagnosed with MS 21 years ago, my neurologist advised that a cure was on the horizon. "I can see, with all the new research, a cure will be found in the next five years," he said. A cure wasn't found and hasn't been found but two years after my diagnosis, in 1993 Betaseron was approved. And that, I believe, is when the focus from finding a cure for MS went instead to finding more drugs to stall the progression of MS. These drugs cost $20,000+ a year. And that's not chump change. And now with a diagnosis, neurologists are prescribing one these drugs to halt the progression.
Eighty percent of all people with MS have the relapsing-remitting form of the disease - these are the people the pharmaceuticals companies are investing their (and the MS Society's) dollars on. The remaining people with MS, like me, have some form of progressive MS. Mine is called secondary progressive; after having relapsing-remitting for 15 years my disease has now progressed to where I have symptoms all the time and rely on a cane to walk. In the newsletter, they addressed the research into 'treatments' for progressive forms this way - the Society plans to do all that it can to speed up development of these treatments. To me, that meant one thing.
Follow the money.
Why would any company be interested in eradicating MS when there is so much money to be made from stalling it's progression. Simple math - at $20,000 a year times 15 years, that's $300,000 per patient. And even though my disease has progressed I am still prescribed one of these 'therapies' for relapsing remitting (because they are now researching it's efficacy for progressive forms). So, in short, I am worth a boat load of cash to a pharmaceutical company. Hell, I've paid some exec's salary for a year.
In the meantime, while young people are dying from complications related to MS, the research continues on how to keep this money train of big pharma on track. And new people are diagnosed all the time. And I worry, because of the hereditary factor of this disease (both of my sisters also have this disease) and my children and niece and nephews are nearing the age of onset. And the research into a cure has stalled.
But I am only one voice. And the issue seems so much bigger than what one voice can call attention to. I sent an email to the Society's medical director a few years ago, complaining that most the research updates were on new drugs and that most of the ad space in the publication were from the very companies the Society should be watch-dogging on behalf of the people with MS. I received a curt response that I then copied to the then executive director of the Society - and she responded quickly with an apology and public -relations like response to my complaints.
I guess I should quit reading their publications. I do now advise that if you're looking to donate money to help MS, it's best to give it to the MS Foundation. They give grants directly to people with MS to help improve their lives and have programs that give cooling devices and adaptive technology to those that need them. They don't seem to support big pharma. That's my Pollyanna spin on this dismal topic.
Dismal but so glad to hear your take. Horrifyingly believable... Now, don't stop talking about it!
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