I think I'd sell our house if it proved to be a cure or actual halt to ms.

Thanks for the info Cheryl!

You have pretty much hit the nail on the head when it comes to developing drugs for MS. As another poster wrote, often we see the small company finding some success and then having to sell part of their drug's "rights" to a much larger company in order to develop it. Just look at Elan going to bed with Biogen in order to develop Tysabri.

While it is very true that the cost of a drug's development is huge, it makes you wonder why medications such as Avonex, Betaseron and Copaxone cost up to $ 18000.00 a year for each patient when they have been around for 15 years or more!! There is a decent profit and then there is greed. Then again, that's what our society is all about!

Harry

I do have to agree.

I keep forgetting that Pharms are not "Not For Profit" companies. They are entitled to make a profit. I guess it's a matter of opinioun of how much is too much.

The NMSS has invested $1 million in Apitope for their research. If it is successful they will share in the profits. The CRAB medications are more than $25,000 per year. oral laquinimod has been accepted by the FDA for fast track. It is looking better and better for the future.

Bill, since you dragged this thread up I will comment on it.

The clinical trial for Tovaxin was terminated due to lack of funding. According to the research I have done, they needed less than $400,000 to finish the Phase IIb open label trial in order to move forward to the Phase III trial. Myelin Repair Foundation pulled their funding/partnership which would have allowed this drug trial to continue.

No one has been able to get the attention of any other research/grant dollars to continue this so the 150 of us have been dropped. Period. We are left to find other methods to treat our MS. For a lot of us, this was a last resort. For some of us, since we were in this trial, it precludes us from eligibility for other clinical trials.

Since I am a volunteer as the Government Relations Chairman for the National MS Society for Idaho, you can bet that I will be speaking to this issue at the Public Policy Conference in DC in March.

This was the first drug that has worked for me and many others that were in this trial. A couple of us are writing letters to all the Legislators, the drug company, and anyone who will listen to us.

Make as much noise as possible, it is the only way.

Sure could use some help

Hi Cheryl..:) It seems to me that you were having exacerbations and infections and such, while you were on Tofaxon. Please tell me how you think/know, it was helping you and how you are worse off, without it.

I'm not being picky I really want to know..:hug:

hey thinking, if I do have MS, and they dx me in coming years, maybe it will be time for the oral meds to come on the scene, so I do not have to do the shots lol..big baby..gave birth to five naturally, yet shots get me ewwwwww

hugss and thanks for sharing the info flygirl hugss,sarah

I had fewer exacerbations - I went from 4 a year to 1 a year. I did have a pretty bad sinus infection but to be honest, the ENT surgeon said that last year was a bad year from everyone around here for sinus stuff.

The year after I was off the drug, waiting to go back on it, yes I was sick. That was the year I was on NOTHING!!

To be honest, the time period that I was actually receiving the drug, from March 07-Sept 07, I did very well.

Thanks for asking Sally! :hug: