Feeling pissy, Lemtrada, HiCy, Stem Cells, Lingo, CCSVI, ugh

[chrishasms]

There are eleventeen things going on in MS that is beneficial and very possibly the end of progression for some. I still look over seas and our colder friends up north and I am jealous of the health care. Not even the doctors but the drug approval process. In most cases they get a drug from petri dish to human bloodstream faster.

Years ago, as some of you have heard, a friend of mine with MS was the head nurse working outside the office of the CDC. She was his right hand so to speak. Cindy said one day they were talking (early 90's) and she was talking about how she wished she could have a cure for MS. He chuckled and said, "I'm sorry but it will never happen. "

Needles to say Cindy was shocked. She asked how could this be? How can you be the head of the CDC and have no hope?

He responded, "In the 1950's Saulk cured the great menace Polio. Everyone thought that was great. Millions were vaccinated. 10 years later when everyone looked at how much money was lost by not treating it they were shocked. By now, (90's) we could have paid off the national debt more than once. All from just one disease. If they would have developed a drug to control it, or a repeat vaccine they would have made millions still. Well because of Polio you will never see another cure. You will see therapies, flu vaccines, and repeat treatments, but no elimination. There is no money in it"

So this is from the CDC. I get depressed sometimes because this damn disease is bad enough. There is nothing a doctor can really do. There isn't much we can do. The government decides what we can do with our own disease and no matter what you doc can only do what they say.

How the hell can we win?

[jimmylegs]

boycott pharma. not an option for everyone of course, myself included at certain times. but disease management is certainly the status quo.

my low- to middling- income co-workers are all busily raising money for cancer research, ms research, you name it - i try not to be a downer around the staff room table, but sometimes i can't help saying that i won't throw what little money i have into that particular machine. it's like buying lottery tickets, except the big winners don't seem to be the patients.

i was just looking at the case of interferon the other day. when a pharma product is just a synthetic replacement for something the body is supposed to be making on its own, i'm far more likely to drill down and try figure out HOW the system generates that product when it's healthy, what it needs to do it, whether the process uses a nutrient that is known to be low in ms patients, and go from there, rather than just dump in some analog as a crutch for a broken system.

[ScaredofMS]

This is a pretty sad and infuriating scenario. There is absolutely little recourse for the pwms or any other other chronic disease. The very nature of a corporation is inherently evil. I dont know how they sleep at night

[CureOrBust]

If they would have developed a drug to control it, or a repeat vaccine they would have made millions still. Well because of Polio you will never see another cure. You will see therapies, flu vaccines, and repeat treatments, but no elimination. There is no money in it"
...
How the hell can we win?

Yeah, but they haven't even found a "repeat" treatment which controls MS. So I would say that they have no hope at a cure; for now.

[FLJhawk]

I don't know.

First, MS is not something that a cure will wipe off the face of the planet. It is not a virus we can eliminate. MS will continue to plague new victims and require treatment. We can "cure" some forms of cancer, but cancer isn't going away and drug companies continue to make lots of money on cancer cures.

Also, most CEO's tend to think in the shorter term. They always are thinking about the next quarterly report and the next annual meeting. No CEO is thinking about profits in the year 2042! Their compensation and benefits is tied to short term company performance. The more profits they can generate in the short term, the better for them. So, if they learn they can cure MS in 5 years, they will jump at it as they will make millions personally from the company's stock performance. I mean, if investors hear real evidence a Merck or a Bayer has an MS cure, their stock will skyrocket. The CEO will makes millions! He can retire and not care less about how the company will be doing in 2042. Over a 30 year period the company profits from MS might be less, but over the short term - which is what the CEO mostly cares about -- profits will be huge.

[shaight]

^ i agree. business is short term for these big publicly traded companies.

i would also add that you are selling the scientists and many doctors short. there are many good people in this world working incredibly hard to solve many different diseases.

you don't have to look to hard to see those people...i would put Zamboni and Burt on that list amongst others.