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Open Letter to James C. Mullen, CEO of Biogen - http://dembot.com/post...
hello andrew, any feedback on your father? My mother is going through the same thing. she has the worst case MM, so aggressive nothing is working for her. she has about 30 days to live. please let me know if your father is responding to this drug. thank you Dina email: yumaveggie@yahoo.com
- Dina Nalley
I forwarded the message along to family members in the medical community and government. Hopefully they can do something to help. In the meantime, I've found that the generic name for the medication is natalizumab, and there's another company that seems to manufacture it called Elan Corp.
There is no generic for Tysabri. Biogen Idec and Elan are partners in this drug.
- Todd
You're half right. Elan and Biogen are in fact partners. Natalizumab is the generic name for Tysabri, but there doesn't seem to be another company manufacturing Natalizumab. I was just posting info as I found it since this was all happening in real time.
- Chris Menning
Andrew, so glad to hear that Fred is responding to the drug! I know many people have been checking headlines daily for word of his progress. I'll circulate this website. Please keep us posted on his continued recovery. Peggy
Andrew please go to http://www.curehunter.com/public...
"Patient-Physician Research Summary Report on Multiple Myeloma" Thanks Jim, that looks like a good resource.
- Andrew Baron
Is it possible to administer the Tysabri by acquiring it (or equivalent) in any other countries??
Canada? http://biz.yahoo.com/cnw...
- cetus
I heard that it might be possible in Germany from one source, but I was unable to get confirmation. I also had came close to obtaining it in Australia so it might be possible there. It's a controlled substance and must be mixed in a lab or in a pharmacy with special chemicals that are not usually on stock. A 300MG dose comes in an IV bag that must be kept at a cold temperatures and as far as I know, you can only get that when its accounted for by Biogen. Only 30,000 people in the world are using it.
- Andrew Baron
I received an incredible amount of emails over the last week with some awesome information, ideas and suggestions which I will slowly start adding to this page. Hopefully this friendfeed room can continue to be a valuable resource for others with MM.
Andrew: I have fowarded your e-mail to every other Trial Lawyer Executive Director (and to the entire membership of the Colorado Trial Lawyers Association) asking that they contact their members and request they contact Biogen. I was going to suggest that we tie up their switchboard with thousands of calls but that might harm others in need of...
Seems when you call Biogen they won't forward your call unless you know the first name of the person you are calling. His name is James C. Mullen
- John Sadwith
Additional strategy: What does James C. Mullen intent to vote ?
Get in contact with the candidate of his choice and mediate that a request of his candidate made the "yes" happen. Win/Win...
Might it help to make it even clearer how little time is left by adding a timestamp to your original post, and/or make some sort of a timer.
It would be terrible if part of the crowd decides not to forward this because there´s unclarity regarding the remaining amount of time.
“I´ve sent your requests to /a lot/ of people and asked them to make sure this request gets closer to someone who can succesfully get James C. Mullen to say: YES.
Hopefully this gets enough traction soon.
Sorry for being "basic" about this: if the drug can be found on the pharmacy a few floors below, why not find a doc that would prescribe and have your father take it. Why bring the CEO into this? Go get the medicine and have your father take it, forget everything else.
I'm thinking that since this is one of the few times this drug has been used in a cancer treatment, that the doctors aren't going to do it until the company approves. Screwed up that corporate interests can dictate people's lives like that.
- Chris Menning
I agree with you that maybe going with the generic (natalizumab) in case of everything else failing is an option.
- Fabian
Mayo has a contract in place with Biogen as a result of the study they are performing that determines the extent of use. One angle that is being persued is suing the Mayo clinic for engaging in a contract like this which prevents them from providing the best care possible. Might be possible to get a ruling in one day. A judge could override all this hell.
- Andrew Baron
I think that sounds like a good strategy. Again, best wishes.
- Chris Menning
Andrew, did you make it clear that you would waive all legal rights if Tysabri was used? I'm sure part of the caution is that its usage is restricted due to PML, but it is already in clinical trials for cancer.
Yes, even the FDA said they would not be libel. PML is a risk that all 100,000 people in the world face when they take the dug for MS.
- Andrew Baron
Andrew: Could the CEO be worried that this drug will be ineffective in this case, and thus lead to it NEVER being FDA approved for general use. I am not saying this is a valid excuse, but perhaps a motive.
I dont think so because my dad is also on Campath now, and the FDA said that they will not count this against them. Its like a case that is expunged.
- Andrew Baron
Something's fishy in Andrew's post. He claims that his doctor discovered this treatment in the lab "a few days ago" states that "drug has never been used before in this way" and that "the head of the FDA, Dr. Andrew von Eschenbach has granted special approval."
Oncologists stated that this isn't how the process works and a quick Google for "myeloma tysabri" shows a clinical trial was announced six weeks ago. Probably best to get your facts straight before writing open letters to the CEO. I realize this is an emotional time, but getting a bunch of people worked up on the internet by feeding them misinformation isn't going to help. They need actionable intelligence.
- meanguy
Let's give Andrew the benefit of any doubt. 6 weeks, 1 week who cares at this point. Let's him just get the drug.
- Farhan Memon
Getting the facts wrong in an open letter (which could easily be corrected) is NOT helping. And it's not the timeline, it's the nature of the other facts. Numerous doctors have commented in threads that the whole nature of the argument is wrong, that THIS IS NOT THE WAY THE (YES, BROKEN) SYSTEM WORKS. It's irresponsible for Andrew not to immediately clarify and fix his post. More importantly he needs to set a new strategy where this outpouring of support might actually do some good.
- meanguy
Meanguy, as usual, $%$# you.
- Andrew Baron
Go get the drug and inject it into your father yourself. Deal with all the consequences later.
for what it's worth - I found this email and sent them a copy of the request and the techcrunch link: public.affairs@biogenidec.com - maybe others could email blast, too?
@andrewbaron, I'm so sorry. My mother had multiple myloma 23 years ago.
I know there is nothing I can do, but I'm trying to post the story on places like digg and reddit to see if someone there has anymore pull with Biogen. I highly doubt it, but you never know.
I doubt it'll reach any one person with more pull (you've already got some BIG names behind you), but if it reaches a wide enough audience (national mainstream media), things could start rolling. It needs to start rolling quickly, though...
- Mickey Mellen
This is pretty sad. Unless Biogen is worried that their drug will make your father worse than he already is, than this can basically be attributed to either greed or mean spiritedness. Being a corporation it's probably greed. If the Biogen CEO is a Christian I hope he thinks "WWJD"...
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