That's it! I met a guy at a legislative reception the other night whose daughter is in that study up in Seattle. He says that she is doing quite well. She is SPMS and like me, has failed everything. She is quite excited about the study.

That's wonderful to hear. I'm sure there are a lot of folks who would be thrilled at the thought of taking an oral medication rather than an injection or IV infusion.

So sorry, I didn't mean to come across as angry at all. In fact, just the opposite. I'm all for new improved treatments. It's just that I don't like the Pharm companies much. I realize they need large amounts of money to continue research, but at the same time I'm tired of the huge costs to those of us who need these drugs when we know as fact that we could get them outside the USA for a lot less. Mix in the fact that many who are stuck in the middle have zero access to them too (if your insured, good. If your on welfare, good. If your the working poor, your screwed)

I do wonder, if and when they come out with a drug that will at least halt the progression of MS completely how much this drug(s) will cost. One year of an ABC runs about $15,000 or more. So what would an average Joe like me have to pay for it (cure)? It's a very sad fact that I, and many, many like me will have to live the rest of our lives with MS simply because we cannot afford the drug(s).

I also can't help thinking that just one person on a ABC is spending $15,000 a year, and that if that person were to take a drug that would permanately halt MS, the drug company is out the $15K for the rest of that persons life???
Times this by hundreds of thousands of people, and were talking Billions of dollars lost to the Pharms.

I wonder how much money the Pharms' spend on TV advertizing trying to convince us to take this pill or that pill (ED as an example..Don't forget to ask your Doctor about...?). I can't help but think that the money could be used more effectively.

Sorry if you thought I replied as angry, I'm not really. I consider myself a logical person and I try not to let emotions outweigh facts.

I completely understand, The cost of meds are just crazy somethings. I had a friend years ago that had MS, she wasn't married and do to the cost of the meds she had to get Medicaid. Than later when she was ready to get married she could afford the meds still with his income also if she lost her Medicaid but if she married she would loss it, so she didn't marry.

I have the same problem. My fiance is disabled and his meds come to 30k+ a year. He gets help from Medicaid in addition to his Medicare. If we marry, Medicaid will take my income into consideration, but NOT MY medical bills and cost of meds, etc. over what my insurance pays. That will discontinue his Medicaid help.

So here we sit, engaged for years and still not married...

Can't win for losing.

Addressing the cost of bringing a drug to market:

Most drug companies that discover drugs that WORK and run the initial trials are small companies. When they get the data that shows promising results, they usually sell a portion of the rights to that drug to a larger drug company, who then funds the rest of the trials. When the drug does come to market the income from the drug is shared according to the agreement made.

This usually works to the benefit of both companies. It doesn't ALWAYS work out that way. There are drug companies who have been known to cut the throat of their partner in order to gain the whole package. They don't always win.

The cost of trials is the most expensive part of drug development. The FDA is on a rampage right now, and there are drugs today that have been through trials designed in collaboration with the FDA, showed efficacy, and are still denied BY the FDA. The FDA is overstepping their regulatory bounds, and a LOT of money and research is moving away from some major diseases, because after all the money they spend to GET the drugs to end stages , they are being denied approval, regardless of their shown efficacy and safety.

No drug works the same for everyone. If they did, we wouldn't be sent home with brochures and CDs and told to pick a drug we can live with to treat MS. We wouldn't be switching drugs, and we would all be living the high life with a great QOL!

( sorry, rant over...)

for the info.

That's awful, I really feel for you two. You know my friend and her boy friend just got rings and told everyone they were married after a while, it was easier than trying to explain why they weren't married yet. You know a lot of women don't change there last name now so you wouldn't have to worry about the last name being different thing.

Although I agree it stinks when any co charges whatever they think they can get away with, here's another way to look at it.

No matter what the cost, if it halted or cured ms - wouldn't it be worth it? Isn't that still cheaper than ms itself?

I'd pay anything if I could be okay again. Just my humble opinion.

Anyhoo, thanks for the info Flygirl. I hope these pan out.

This is true.

I actually know a couple that are getting divorced on paper because their son has a rare disease and needs a very complicated operation that thier insurance company deems experimental, but yet when they divorce medicaid will be available to him and will pay for the surgery. Go figure.

I'd do it too if it were my child.