I am so happy for you, Vic . . .

Cherie

Wow, Vic . . . this is VERY important information for people to be aware of:

"These laws require medical providers to seek payment only from the insurer for services covered by the plan. Many states also shield insured patients from balance billing by out-of-network hospitals and doctors in emergencies, since patients usually don't control who treats them in those situations. (Bans on balance billing generally don't apply when a patient gets an elective procedure, such as cosmetic surgery, or seeks out-of-network, non-emergency service without a referral.)"

I hear of this happening a LOT in the US (excess billing, like this). Thank you for pointing this out, and I hope it helps a lot of people.

Cherie

That's grrrrrreat, Vic...

Good Luck..

Oh BRAVO Vic!!!

You da MAN!

As most of you know, Tysabri trials have been started for Multiple Myeloma (a form of cancer) The P1 trial started a few weeks ago.

There is a man, Frederick Baron, who is dying of MM. His family has asked for Tysabri. The Mayo clinic doc who is treating him said he only had a few days to live, and told them his only chance at recovery is Tysabri. Mayo happens to be one of the trial sites, even though they are not advertising it, due to the overwhelming number of patients who want in on this trial)

Mr. Baron also happens to be a lawyer who has sued a lot of drug companies and manufacturers ( think Merck and Vioxx, mesothelioma and asbestos) and a huge Democratic fundraiser.

He has had some big friends go to bat for him ( Clinton, Kennedy, Lance Armstrong, etc) and begged the FDA to allow him to have Tysabri. The FDA said ok. Then the family went to Jim Mullen ( the CEO of Biogen Idec) Jim Mullen said NO.

It now appears that Mr Baron's family has found a way, outside of the TOUCH program and outside of the P1 trial (only 12 trial patients) to get Tysabri and has been infused, despite Biogen Idec refusing to agree to the compassionate use granted by the FDA.

No one is saying how the family overcame the TOUCH program, but they did.

This case will bear watching, due to the unknown implication it will have, both on the trial for MM and for those who do not have influential friends to go to bat for them and have late stage MM, and on Mayo Clinic as one of the trial sites ( for allowing off label use without Biogen's permission)

To read more search on Frederick Baron or go to his son's blog at http://dembot.com/post/54498664/open...omment-3101930

I wish him well, River......but, I thought that Ty was actually linked to possibly causing MM???

No Sal. You may be thinking about the MELANOMA letters, where two doctors from the same practice sent letters to the FDA and AJN about two patients who had a previous history of either melanoma or a family history of melanoma who developed a melanoma or had a melanoma that was already diagnosed, exacerbate.

No link has yet been proven.

This man has MULTIPLE MYELOMA.

Wow RW, I hope it will work for him at this late stage. Too bad he couldn't have received it sooner.

While I certainly hope that it works out for this man, it brings up some very interesting questions, Wiz.

For instance: what if he dies anyway.

Does Tysabri again get listed as the cause of death?

If he does die, does it affect the stats for the P1 trial despite his obtaining it outside of the trial and outside of the TOUCH program?

Should a very well off man who has a history of huge lawsuits against drug companies and who has influential friends get a drug that others with the same disease and at the same point who are NOT well off and well connected have no chance of obtaining?

Should a trial center be suggesting or allowing treatment with a drug that they have agreed to run a Phase 1 trial for, after the person hasn't met the criteria for the trial, the trial is full, and his inclusion may skew the trial results since it is only a 12 patient study, especially when the drug in question is NOT allowed to be prescribed off label for ANY reason by the requirement of the FDA, who wouldn't allow that drug back to market without strict guidelines and monitoring?

The family had stated that they would NOT sue or hold Biogen liable for anything that happened, but the history of this man and his law firm precludes me believing anything.

I just do NOT want any chance of Tysabri being pulled or maimed further by off label use regardless of who or why. I for one cannot afford further disability or relapse, and I won't be happy if something happens to endanger any of us on Tysabri. We've already been through this once and it didn't go well for a whole lot of patients who are now disabled because of it.

What a roller coaster ride!

This has been fascinating to say the least.

Since I have been off of Tysabri (9 weeks now), my neuro-team has spent a long time trying to determin how to deal with my problem,..., only to find out that this infusion center cost issue has crushed several of their patients financially.

I know that Biogen has provided me one free "emergency infusion" for next week, and the new infusion center will only charge an insignificant amount. But,.., there's more...

The new infusion center will be charging the same amount as the previous one afterwards. Hence, the financial burden of Tysabri will remain in place.

My neuro-team has done what they can.
Biogen has done what it can.
My insurance has done what it can.

The infusion costs are waaaaaay too high.

As of two hours ago I have decided that Tysabri is no longer worth the financial strain.

Hence the reference to a "roller coaster ride".

Rebif is now back in my future.

As a side note, my neuro-team is reviewing two new studies that show that Tysbari can take between 4-6 months to finally leave your system. When the citations for the publications are made available I will post them.

So there it is...once again I am off of Tysabri but not concerned, just fascinated by the process and by how absolutely infuriated neurologists are (like patients) at the cost of infusions.

As Yeager says, "Press On..."

-Vic