DISQUS

Andrew Leyden · 1 year ago

I wish you all the luck in getting this and hope permission is granted soon. Is this the same drug being used in this cancer trial here--> http://www.boston.com/business/ticker/2008/09/b...

Steven Chang · 7 months ago

I know a good alternative treatment for this cancer:

http://www.treat-cancer.info/

Good luck!

Nick · 2 months ago

You are a scumbag if you are promoting this as a cure for cancer. How dare you?

alphaxion · 1 year ago

I have re-tweeted. I hope someone that can help gets to see it. Thoughts are with you guys.

Andrew Baron · 1 year ago

@andrew Yes, thats it exactly.

Andrew Leyden · 1 year ago

Can he qualify for that trial? It seems to be on the East Coast but I'm not sure. You might have more luck pushing for him to be added to the trial, under the rubric of all the legal and drug trial machinations rather than getting it in a one-off instance. Haven't been able to find out who is running that trial directly (i.e. hospital/doctor) but they might have a more sympathetic ear than a CEO.

raines · 1 year ago

Can't a doctor prescribe it "off schedule" i.e. for other than the intended purpose for lifesaving purposes such as these? I didn't think the company's approval was needed for such.

andrewbaron · 1 year ago

Yes, they can. But they won't. The decision is up to Biogen. Unfortunately, there is no law that will force the company to agree and without them agreeing, there is a law that prevents any doctor for using it for this purpose.

Mignon Fogarty · 1 year ago

I used to work with the pharmaceutical industry, and unless things have changed, your dad's doctors should be able to administer the drug "off label." It is approved for multiple sclerosis, which means they should be able to get it at the pharmacy and then use it in any way they want.

A drug company can't *promote* use of the drug for other conditions, but as far as I know they shouldn't be able to block it. (And it sounds as if you have the FDA on your side.) Oncologists, in particular, are known for regularly using drugs off label.

If I were you, I'd pressure the doctors more to use it off label.

And I'm sorry if I don't understand the details of your particular situation and this advice isn't useful. Having lost both of my parents, I know how frustrating and difficult this time must be for you.

If for some reason I don't understand it is in the hands of Biogen, they shouldn't be blocking you.

shafqat · 1 year ago

I'll put in calls to Biogen now and spread the word (Mike at TechCrunch has already started the campaign).

Can't you just do it? Screw the CEO and either break into the clinic and take it (I'm serious) or convince one of the doctors to do it. Surely someone must be prepared to break a rule.

I'm sure if someone gets fired you can campaign and raise enough money to help them get through any consequences as well.

I'm praying for you guys and will do everything I can.

Mihai Secasiu · 1 year ago

good idea

andrewbaron · 1 year ago

Possible last resort if we could get a hold of the drug and figure out how to administer it.

Mihai Secasiu · 1 year ago

sometimes people say 'no' because that's what they want everybody to hear. He ( the ceo of Biotech ) must have his good reasons for that and it's unlikely to change. But I don't think that there will be any legal consequences if somehow you manage to administer the drug

Sou · 1 year ago

You are a bloody terrorist. Did you once bomb the Pentagon??

Moron!

Mihai Secasiu · 1 year ago

wow, that is just plain stupidity. I could not imagine that in a country like USA you would have to have the approval of the pharmaceutical company in order to receive treatment.

Sou · 1 year ago

Blame the FDA. They did injustice to the miracle drug called Tysabri.

Do some research before posting please.

bosgirl · 1 year ago

doctors prescribe stuff off-label all the time, why wouldn't they just give it to him? they have been using Parkinson's drugs to treat RLS for years before it was approved to do so, and they never got permission from any pharmaceutical company or FDA to do so. .

Lauriesm · 1 year ago

Take this to the national media RIGHT NOW! Let Mullen explain "No" to America.

Sou · 1 year ago

The national media has been painted smears on Tysabri for the past 3 years and everyone knows that it is a poison that causes PML, cancer and liverver damages.

The nation press is the problem because it is controlled by the ambulance chasing lawyers that have been encouraged by the liberal Democraps.

Kudos to Mullen for a job well done.

Marc Elias · 1 year ago

Andrew,

You and your family are in my blessings today.

Respectfully Yours,
Marc Eilas

amous · 1 year ago

wish you all luck, i email you , hope u can read it as soon as you can.
and your post will be on my blog now!

Jane Kohner · 1 year ago

Who has the "right" to live or die determined by money. Hell will fill with those responsible for this "unofficial" assisted murder.

Andrew · 1 year ago

God Bless You. Fight the fight.
MAKE IT PUBLIC AS POSSIBLE.
Prayers and best wishes.

Andrew Baron · 1 year ago

We asked to be involved in the study, but we also asked to be involved off-study. Biogen denied.

Kat · 1 year ago

I am praying for your father. I have also submitted this link to linkfilter.net, posted it on both of my blogs, and sent an email to a friend with a much larger blog audience.
If I wasn't at work I'd be working the phone numbers mentioned in your post, but I simply can't right now. I so hope this man changes his mind.

Boris Revsin · 1 year ago

Could the CEO know more about the drug than we do? Maybe it's a dud?

In any case, it seems like right now would be a good time to JUST LET THEM TRY.

goron · 1 year ago

Contact the district attorney in biogen's jurisdiction, explain the sitch, perhaps they can convince biogen that a manslaughter charge, or a 1st deg murder charge is not worth it -- time to play hardball with the biogen scumbags.

Alternatively, if the drug is available in Mexico, go there, someone will administer it.

The co knows that its effective against multiple myeloma....

http://www.biospace.com/news_story.aspx?NewsEnt...

Jeremy Koempel · 1 year ago

My father lost a battle to multiple myeloma November 3, 2006. For obvious reasons, your story hits very close to home. The roller coaster that is confronting a disease like Multiple Myeloma with a loved one is something I wouldn't wish upon anyone. It infuriates me and should everyone else in the U.S. that a cheap and possible effective treatment for the disease exists and can be withheld by a corporation. Especially when you and I know the reason Mr. Mullen does not want to grant your father access to the drug is that should be an effective treatment for the Multiple Myeloma, the opportunity to jack the price up 1,000% is more important than the life of a human being. I hope very much that Mr. Mullen will make a precedent and decide to allow your father access to the drug if for no other reason than to give your father a righting chance and to learn how the Multiple Myeloma responds to it. We can't allow corporations to continue along the path of profits above humanity and the environment. I wish you the best and will be watching closely as well as calling around.

Stacey · 1 year ago

Jeremy,
My father was diagnosed with Multiple Myeloma this past Feb. If you don't mind could you email me. I have questions and concerns that maybe you could help me with this terrible condition my dad is going through.

Lori · 1 year ago

Andrew, I'm truly, truly sorry you are going through this right now. I lost my father a year ago to cancer and know the importance of timing. I'll fax them a letter right now. If you have any more information on who to contact specifically, I'm happy to help. My thoughts and prayers are with you today.

Dan Thornton · 1 year ago

I'm obviously no legal expert, but it seems that health care and drug providers really don't even give the slightest care in the world about anyone except themselves...

I'll spread the word as much as I can, and hope that a solution is found in time....I always find it horrific that a possible lifesaving action can be denied for financial or other reasons, when there's no time to waste...

Jacob Redding · 1 year ago

The very least they can do is to provide a reasonable explanation as to why they are saying "No". Possibly they have had bad tests with it lately or maybe the lab rabbits ran off with it. Who knows.

Good luck on the fight. Posted on both of my blogs.

Dan Thornton · 1 year ago

I've also sent your plea to the UK branch of Biogen, in case they have any more common sense.

gfs · 1 year ago

i sent this to don lemon on myspace. cnn puts the myspace/facebook stuff up all the time, maybe other people can try that too.

Dan Thornton · 1 year ago

Ah, could the refusal be down to articles, and claims of Tysabri causing brain damage and PML?

http://www.druginjuryblog.com/2008/08/05/two-mo...

Mark · 1 year ago

I am an investor in Elan and Biogen and I have also lost several members of my family to cancer.

I do not understand Mullen's response. I assume that it has to do with the fact that Tysabri has just started clinical trials for Multiple Myeloma and they may feel this would compromise the trial somehow. However, if they have a waiver from the FDA, then this seems to be just a poor business decision, as the last thing Biogen needs is to alienate the FDA. Perhaps you can appeal to Elan (Biogen's partner and developer of Tysabri) or Carl Icahn who owns a minority stake in Biogen and is fighting for control of the company.

Best of luck to you.

Dan Lurie · 1 year ago

Andrew,

I hope only the best for your father and your family. This is just one more example I the utterly disgusting disregard for anything but the financial bottom line held by so many in the corporate world.

I'm forwarding this to all of the medical researchers I know in hopes that they perhaps have some insight.

If it comes down to it, break into the clinic and take the drugs yourself. If you can't find a Doctor to help you, they shouldn't be in medicine in the first place. "First, do no harm." should not be an empty oath.

jsmibert · 1 year ago

I'm truly sorry for your situation.... I have both tweeted it and will send an email to the company. I cant lie though, were I in the same situation, it would be straight to Mexico (in fact I live in Arizona and would be happy to make the 4 hr trip to get what you need for such a situation) Alternatively, I'm sure there are hospital pharmacies who would turn their heads for such an occasion. Nothing would keep me from saving my Dad... I'm happy to help however I can, best of luck in these other pursuits!

wreckandsalvage · 1 year ago

This doesn't make any sense. I'll make some calls. Best of luck to your Dad.

Bigger Voices · 1 year ago

So sorry to hear that. Hope he will change his mind soon.

Michael Copeland · 1 year ago

Come on people! It's time to spread this around the Social Media Landscape! Get going.. Tweet, Ping, blog, bookmark, have conversations, all about this!

Hao · 1 year ago

Andrew, I contacted my mom at Biogen.

Frank · 1 year ago

All the best to you. I will forward this around.

dkitch · 1 year ago

Andrew - having been in the pharma industry for many years I have seen countless doctors prescribe drugs off-label for patients in need. It is common practice in oncology, psychiatry and on and on and on. Biogen had many problems with Tysabri as you probably know by now and the FDA pulled it off the market for a time for a particular indication - MS I want to say. There are NO circumstances where a representative of a drug manufacturer can "approve" off label usage of one of their drugs but they routinely employ Medical Science Liaisons to discuss off label usage with physicians. While not "recommending" off label usage they are able to legally speak with doctors about unusual applications and even recommend that a physican speak to another doctor that has used the drug off label. There is NO reason in the world why your dad's doctor has not (ESPECIALLY with the FDA's blessing) been speaking to other docs about using Tysabri in this case. Your dad's doc should have already administered the drug which is absolutely NO problem to acquire at ANY drug store. Please push your dad's doctor!! He/She is the one that is blocking progress for your dad at this juncture! I sincerely hope that this doctor is not fearful of liability, getting sued, getting in "trouble" and that is why he has not proceeded.....that would be reprehensible. Good luck Andrew, my heart goes out to you and your family.

Jake Adams · 1 year ago

CEO scum does not want to jeapordize public opinion of his drug which is just starting trials for your Dad's condition. If it does not save your Dad public opinion will now be that it does not work. This is about money and future drug sales!

Eryka Clayton · 1 year ago

Good Idea -

Scott Yates · 1 year ago

Do whatever you have to do to get him the drug. Going through official channels hasn't worked. Do it now. We will all support you to deal with whatever consequences come.

KarenSwim · 1 year ago

Andrew, my thoughts and prayers are with you and your family. I am on hold right now with the company waiting to speak with someone.

Carl Weaver · 1 year ago

Andrew, my best to you and your father. I had no idea he was this sick.

My guess is that the company wants to make their stats look better and that someone in their final stages will bring down the curve. It's an ugly way to think.

My prayers are with you.

Carl

G · 1 year ago

Something stinks about this article. I call BS. Clinton, Harkin and Kennedy have all called TWICE????? Kennedy is not in the position to be making these phone calls and Clinton is on the campaign trial. C'mon people, this doesn't even make sense unless you are so upset at the pharma companies that you want to believe this.
This is BS. If your doctor won't prescribe off label get another doctor. It is as simple as that. Why on earth are you even talking with the CEO? If you wanted to get a clinical trial off the ground, yes talk with the CEO. If you want this APPROVED for routine clinical use, collect from your orbit of new friends here until you have ~10 million dollars. Organize the clinical trial, wait until your endpoints are met and submit for regulatory approval. In 2014 you may see the drug APPROVED for this use. Or change doctors and use off label.

anon · 1 year ago

You idiot. You clearly don't know who Fred Baron is.... Look it up

Dallas · 1 year ago

Amen...thanks for verbalizing what I am stiting here thinking.

Sou · 1 year ago

I know who Baron is. He is a ambulance chasing lawyer who contributed heavily to the Demolition party. He has sued many big pharmas for letting the needies to use the drugs OFF LABEL. He made millions.

Now he wants Tysabri for himself OFF LABEL!

OFF LABEL!!!!

Mullen's denial is good!

anon · 1 year ago

I believe what is happening to Baron here is called "karma"
I agree -- something about this letter smells...

Leo · 1 year ago

Sou -- we get it. You hate Fred Baron. Please go away.

Patty · 1 year ago

What about the members of the Board of Directors? Have they been approached for the release of the drug?

ram · 1 year ago

More than a time for campaign and getting approval from Biogen CEO, ask your doctor to go ahead and administer the drug.

By the way there is enough chance that your dad does have multiple sclerosis so maybe administer the drug for multiple sclerosis. http://en.wikipedia.org/wiki/Multiple_sclerosis.

The symptoms of multiple sclerosis are those that are normally present to those in the age group of 60+ so no reason why your doctor should not administer the drug and treat multiple sclerosis... Hope you understand what i mean. Get smart, if the law is dumb go over the law...

Some of the common symptoms of multiple sclerosis..
Blurred vision, eye pain, loss of colour vision, blindness, Problems with posture, Short-term and long-term memory problems, forgetfulness, slow word recall, Respiratory problems

joey · 1 year ago

GET A DIAGNOSIS FOR MS

GET A DIAGNOSIS FOR MS

GET A DIAGNOSIS FOR MS

GET A DIAGNOSIS FOR MS

can't stress it enough. someone on your side will grant the diagnosis.

R. kopelson · 1 year ago

Contact 60 minutes, Anderson Cooper, ratchet up the PR attack. How about the White House? After the Schiavo situation, they should be willing to help someone who is still alive.

Kat · 1 year ago

Wait, I too am wondering about this article. Why does it say "President Bill Clinton" and not "former president" or something like that....

wreckandsalvage · 1 year ago

Past presidents retain their titles.

jjj · 1 year ago

yeah.. cause that's what's important right now jackass.

gé · 1 year ago

I've twitted it to Rick Sanchez from CNN (I follow part of the US election campaign through his tweets), even though I'm sure I relay an information for wihch I have no complete understanding (but what the hell)

He is following 19000+ people but if somehow the message is twitted enough it could attract some attention.

I wish I could do more for you, for now I can only wish you all the best possible to you and your family.

Geraldine, from France

jeneane · 1 year ago

Andrew = Praying for you and your family and an end to this stupidity you are enduring. I will post on my blogs and send via email to my friends as well. Please keep us posted. They must have something to hide, and by the way it seems, they just went about the wrong way of trying to hide it.

Abigail Alliance · 1 year ago

From: Abigail Alliance for Better Access to Developmental Drugs
What we are seeing in this article is yet another reason we need to pass the lifesaving and life-extending Access, Compassion, Care, and Ethics for Seriously Ill Patients Act in Congress. ( ACCESS Act S.3046 H.R.6270 LINK: http://www.abigail-alliance.org/S_3046_ACCESS_A... )
However, much more support is needed on Capitol Hill. It would be a TREMENDOUS BOOST to the bill if we could get the support of Lance Armstrong, President Bill Clinton, Senator John Kerry, Senator Tom Harkin and Senator Ted Kennedy, who all personally requested that the FDA approve the use of Tysabri for multiple myeloma.
Frank Burroughs
President Abigail Alliance www.abigail-alliance.org

Elizabeth Saloka · 1 year ago

I just came across this story on TechCrunch. It's absolutely unbelievable. James C. Mullen has a chance to save a life and he chooses not to. He has a chance to make a positive difference at no cost to himself and with zero risk of legal ramifications and he chooses not to. Why? Does it matter? At the very least he owes Andrew and his family some sort of explanation. At the very least.

victorcab · 1 year ago

Confused...
What is James Mullen thinking! Make a difference please! Don't get in the way!

Jonathan · 1 year ago

Say yes. And, um, if you're worried about anything, get everything in writing.

Noel · 1 year ago

This is almost unbelievable. If it is available at the pharmacy, a retail establishment, Biogen no longer controls the sale of the drug. And why would the doctor need the approval of the CEO to prescribe the drug? There are many other questions that must be answered before any of these make sense. But, we are dealing with life here. We must give him the benefit of the doubt and join the appeal to get the drug to save his father's life. Anyone who is concerned with liability lawsuit can require him or whoever in his family is auhorized to sign all the necessary waivers on his father's behalf.

Mike · 1 year ago

The guys at Dana Farber are the ones you need to speak with. If you are really desperate, you can likely procure Tysabri in Mexico from a neurologist. The drug has substantial side effects and the FDA and other bodies have specifically implemented a program to prevent its use in any other indication besides Multiple Sclerosis. This conservative stance from the FDA is due to very negative public pressures on drug safety and is an unanticipated side effect of a more risk adverse regulatory climate.

Lets be clear: this drug was pulled off the MS market because of an incredibly rare side effect and was brought back on because MS is such a devastating disease. It may be tough to get these stakeholders to be lenient when there was such intense public pressure - bordering sometimes on the hysterical and with a great deal of anti industry sentiment - in the recent past


In addition you may also want to know that Elan not Biogen actually markets Tysabri in the US. Elan is the originator of the product and Biogen licensed it in.

Jackie Ross · 1 year ago

Contact CNN here:

http://www.cnn.com/feedback/tips/index.html

bubs · 1 year ago

Ugh -- get another doctor. NOW. The doctor should be able to get that drug prescribed. When my father was dying of cancer 11 years ago -- all within 14 days of admittance to the hospital -- I had to fight tooth and nail for his treatment. Don't let the doctors hem and haw, get that medicine from them or someone else who will! I'm posting this on my facebook page too. Good luck and keep us posted. --Bubs

Peter Huesken · 1 year ago

“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.

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.

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...

Nicole · 1 year ago

Maybe it's because your Dad is a trial lawyer, and built his business suing companies like Biogen? Maybe it's time to get yourself a cut throat lawyer, and do it fast, on the hop.

Alex Williams · 1 year ago

Any word?

darko · 1 year ago

I can give you a reason - they are in phase one clinical trials of Tsyabri as a treatment for Multiple Myeloma. They use extremely small groups of hand picked test subjects to ensure a success rate high enough to continue to Phase Two clinical trials. As your father is end-stage, they expect the drug to not to save him at his stage and are not willing to risk damaging the results of the clinical trials. To them it i your father's live weighed against a patent extension and millions in revenue.

Kelly · 1 year ago

I used to work with Fred and he is such an amazing person. I've already logged my call to Biogen and they said that they've already received numerous calls on this....

hardaway · 1 year ago

What about outside the US? What about another prescribing doctor? My heart goes out to you. My husband, who himself died of cancer, would have written this prescription in a heartbeat. He would have pretended it was for something else. Wish we had him.

lsemel · 1 year ago

Best of luck to your father.

dario · 1 year ago

Best of luck, Andrew. Keep us posted if possible.

Jack Fairhall · 1 year ago

This is truly unbelievable. I wish you and your family the very best.

Bennett · 1 year ago

Folks, If you feel passionate about this issue, I urge you to get on Abigail Alliance's bandwagon.

Frank Burroughs and his organization have practically been the lone voice for tens of thousands of late stage cancer patients on whom the pharma industry & the FDA have turned their backs.

Frank's organization has testified in congressional hearings. They have spoken as patient advocates before FDA advisory panels. They have taken legal action against ridiculous FDA bureacracy. Their commentaries have appeared in the Wall Street Journal, NYT etc. They have protested in front of the FDA on behalf of the terminally ill.

Thank you Frank for what you do and for your comments above.

Please go to http://www.abigail-alliance.org/ to read more about their efforts. Get involved

bill · 1 year ago

The drug is in the hospital with your father. What's wrong with everybody, where is there humanity, what is wrong with saving a life. This is how you save your father.
1. Go to pharmacy in the hospital.
2. Get the drug.
3. Inject drug into father.
If the rules and laws are wrong then they should be ignored.
If nobody can see this then we are indeed living in a dark and backward time.
Don't be ruled by fear.

Danielle · 1 year ago

Good luck. My heart really goes out to you. I hope Biogen comes through or a doctor prescribes off-label. Thoughts and prayers..

Louise · 1 year ago

Because of safety concerns, FDA has required that Tysabri be made available only to registered patients with MS or Crohn's disease. In addition, doctors and pharmacies must register with the company. Biogen-Idec is required to ensure only registered patients, doctors, and pharmacies use the drug. Thus, unlike most other drugs, a physician cannot prescribe Tysabri off-label.

Having said that, it is possible to file an Investigational New Drug application that allows an investigational drug to be used in an individual patient. This is apparently what Biogen-Idec is refusing to do.

Winston · 1 year ago

For multiple myeloma, there are highly active and effective treatments already available (i.e. VELCADE and Revlimid) and stem cell transplant. Why would a doctor not try these proven regimens first?

Additionally, Tysabri is in Phase 1 testing for Multiple Myeloma with only a dozen patients intended for treatment. It seems highly risky to say at this point that this is a miracle drug.

kate13 · 1 year ago

As a CEO you should understand that Biogen may have legitimate reasons for their decision but cannot comment publicly. I am an MS patient currently taking Tysabri and have followed the struggle Biogen has keeping this drug available. While there are currently 32,000 patients taking Tysabri worldwide, when 2 new cases of PML occurred in July, the press raked Biogen over the coals and their stock dropped 50%. I do not see that kind of pressure put on other drug companies that have a far greater risk of death. Tysabri has reversed my MS symptoms and I applaud them for not taking risks with the possible recalling of their drug.

Where are these famous people when those of us with MS are struggling to maintain our quality of life? And though you consider Tysabri cheap, when your not able to work because of MS, $3,000 a month quickly reduces your wealth.

Your father's life is important but FDA approval has many strings attached. Other drug companies have trials for oral medications that are similar to Tysabri. Perhaps they would be more responsive to your situation.

anon · 1 year ago

Something doesn't make sense here. I have a similar situation with a loved one and the doctor was able to write a SIMPLE PRESCRIPTION to use the drug off-label. Once a drug has been approved there is no way a drug company can say it can be used for this but not for that. There is missing information, I would love to help, can we get some more info....

p · 1 year ago

I know this comes as little comfort, but I have been where you are, only it was my husband and not my father, but I just want to caution you -- and again, I know well the difficult situation you are in -- that treating the biology of the cancer cell is not yet a proven science and antigen therapy has not yet been shown to have much effect on the longevity of a cancer patient. I know, I know, I know, you would do anything you can. And I applaud you for doing that. I just want you and other caregivers reading this to know that sometimes everything that can be done IS done and yet we still do not have a reliable way to prolong the lives of lots of patients.

Acceptance is the hardest thing, the hardest won. But the most important thing.

It frustrates me greatly because I know well that there is a thriving industry of idiots who make money on people's fears and hopes, selling them lies because there's a widespread belief that "something" works. It doesn't, yet. I apologize for inserting my message into your painful experience but I think it's important for people to understand exactly what's what when you're talking about a terminal cancer diagnosis, because by the time you find yourself and your family there, it's a freaking house of mirrors and impossible to comprehend.

I encourage readers to support cancer research because antigen therapy is SUPER promising, but I want to caution everyone that there really is no magic bullet and we really need to support research, research, research and help those doctors who are forging ahead with therapies.

Andrew, I really feel for you and your family and my heart goes out to you. By no means do I mean to minimize anything you are going through. But one must, these days, be prepared for a loss, as there really is not yet hope. Denying drugs is ugly and purposeless, particularly given that some people really do need compassionate use. But I don't know, loss is part of the process and since it's not yet a proven field of medicine, antigen-drug makers can't be blamed if this does not all work out.

Gosh, that's a truly mean thing I am saying. I am just trying to say to those who may find themselves in this same odd, confusing, scary place: There is nothing yet that "works." Certain cancer diagnoses do not turn out well. Bad things DO happen to good people. Support research now. Try to help these therapies become widespread. Help them keep trying. Someday something will work. Give to cancer research!!!!! Pay attention to cancer research!!! And remember that caregivers like Andrew here are the most beautiful people on Earth and they are in agony. Be kind to them.

Do what you have to do. · 1 year ago

Listen, Do what you have to do, Go get the drug and inject. This is your father, do what you have to do. Like you said in the post, they have NOTHING to loose, May be they can evenb learn something from it to help others.

Do what you have to do.

jjj · 1 year ago

You know where the drug is. Get a gun and a bat.. walk in and take it. Law's do not apply in our country anymore anyhow. Why should we only bend the rules of society to help dying banks??

GGU · 1 year ago

Most drugs have side effect. Even over the counter drugs like aspirin have serious, even lethal side effects. In the big picture, the benefits usually outweigh the risks. That is until you are the one out of a thousand, or million that comes down with a serious side effect.
Tysabri seems to be the only treatment that works to reverse MS symptoms, for otherwise healthy patients. Tens of thousands of MS patients wanted to get on to Tysabri. Then, several cases of a rare brain infection (PML) cropped up in a few severely immunocompromised patients. The drug was (unwisely?) pulled from the market. MS patients in queue to take Tysabri had to remain on inferior treatments, or no treatment, only to decline. Many people lost their mobility, vision, and will to live as their MS symptoms worsened while Tysabri was off the market. The FDA allowed Tysabri back on to the market about two years later, but with an unprecedented prescribing program called TOUCH. There is no off label use, and doctors must verify the MS diagnosis with many different tests, including MRI. (Tysabri has just recently been approved for Crohn's disease, also subject to the TOUCH program)

Studies suggest that Tysabri may be effective in treating a long list of cancers, and other immune system disorders. An early trial is beginning to test Tysabri on Multiple Myeloma, but it will be several years before the FDA begins to think of approving other indications. Most drugs are allowed to be used for "off label" uses, as the doctor and patient agree, but thanks to the FDA mandated TOUCH program, Tysabri is severely restricted, so off label uses like this case cannot happen.

Other drugs are on the market with worse odds of adverse side effects, and the FDA allows off label use. Only Tysabri is subject to the severe TOUCH program, and no off label use.

I don't know how, but I hope some solution happens for the Baron case.

Here are some links for more info:

http://www.tysabri.com/tysbProject/tysb.portal/...

http://www.tysabri.com/en_US/tysb/pdf/TYSABRI-p...

===========================================================================
TYSABRI is available only through the TOUCH Prescribing Program, which stands for TYSABRI Outreach: Unified Commitment to Health.

TOUCH is a restricted distribution program focused on safety and developed with the help of the Food and Drug Administration (FDA):
Only prescribers and patients enrolled in the TOUCH Prescribing Program can prescribe and receive TYSABRI
Only certain pharmacies and infusion sites authorized by the TOUCH Prescribing Program can dispense and infuse TYSABRI
TOUCH offers more access to doctors and nurses. Your treatment is closely monitored to help make sure TYSABRI continues to be right for you:
Once every month at each infusion visit
Every 6 months by your doctor
TOUCH assigns you your own specially trained Case Manager to help:

Get you started on therapy and answer questions about your therapy
Find an authorized infusion site in your area
Provide information about insurance coverage and possible sources of financial assistance, if necessary

JAF · 1 year ago

I worked with oncology pharmaceuticals for 20 years. Mayo Clinic is NOT the place to go for any kind of cancer. Get to MD Anderson, or believe it or not---University of Arkansas Medical Center. It's THE world-reknowned center for multiple myeloma, and treat more of it than any other place in the world: http://myeloma.uams.edu/

Mayo is known for doctors being stodgy, stubborn, and conservative. Get him to Arkansas, MD Anderson, UCLA, Dana Farber--just about any place else. Have Bill Clinton connect you to someone at Univ of Arkansas....

Good luck. And by the way...even tho the FDA said they will give your dad a waiver to get treated, a bad result in your dad with Tysabri will STILL torpedo the Tysabri trials in MM. That's because our FDA sucks very badly, and they will not be able to separate your dad's experience from the trials....and Biogen/Elan KNOWS THIS. That's why they are not allowing your dad treatment.

Also--"giving" Tysabri is not just a simple injection. It's an infusion, which means there are other drugs that MUST be given before and after.

funtime7777 · 1 year ago

Biogen needs to grow a pair and let a break through happen. This country didn't get where we are today, withholding treatments to help people recover from life threatening ailments. Give Fred a chance!!! NOW!!!!

Zo · 1 year ago

now that post took courage.

Joachim · 1 year ago

I spoke with a guy from Biogen in Germany.They assured me that,at least in Germany, the off-label use of tysabris should be allowed.I know this is just a little hope...but perhaps it helps.Good luck.

Scott Riccio · 1 year ago

Andrew,

You and your father are in my thoughts and work today. Your father's case is simply another symptom of an inefficient system that continues to experience periodic breakdowns because few have taken the time and effort to examine all of the areas that contribute to its problems. The FDA's Science Board took the time, a few others have as well, and that's where we at Accelerate Progress are spending our time. It should not require the kinds of connections and calls you were able to make in order to get people to consider helping someone in a circumstance like this. Most people can't get those calls made for them. What we need is a better system that dramatically accelerates access to promising and potentially lifesaving new therapies by improving policy and broadening the use of better science.

We have the scientific tools and methods available today to accelerate the system, to improve the speed at which drugs that work are delivered to the patients on whom they work and drugs that don't work are removed from the system with full information disclosed to accelerate learning about why they didn't work. We need to focus on deliving that intellectual capital to the places most in need, including to our regulatory bodies, among others. Many, many constituencies need to come together to accelerate progress, including patients, academics, treating physicians, industry, research bodies like NIH/NCI, regulators (FDA), and others.

The system in place right now makes things very difficult for Biogen. They can, and should, do more and do right by your father. But we must also work hard to create a system where it's not so difficult for them to do what you've asked, where regulatory drags on innovation are removed and the burdens of an inefficient system are lessened to allow many, many more patients to get meaningful access to therapies that can work for them.

Best to you and your father. I invite you both to join us in our work at Accelerate Progress.

Sincerely,

Scott Riccio
Director
Accelerate Progress

Steve M. Parker, Jr. · 1 year ago

This is completely and utterly bogus of Biogen, especially given the doctors, FDA and even your family personally have given the ok to use the drug as an experiment. Further, to deny someone with no other options the right to have a chance is not only un-American, it is down right un-constitutional - laws or no laws.

As the founder of two digital media firms, one of which is one of the largest breast cancer websites online (www.BreastCancerAwareness.com) I will make a personal effort to make this matter clear to our newsletter subscribers and website visitors. Biogen is flat out wrong in their positioning. I am sickened by this. Mr. Mullen should be ashamed of yourself both personally and professionally. I don't know how any personel working at Biogen can work for such an individual and know that you are so corse that you deny this man a chance to live.

John Ansbach · 1 year ago

Andrew,

There is a LinkedIn group called the Baron & Budd Alumni Network made up of about 70 former employees of your dad's firm. Just wanted you to know that we emailed the Network this morning asking for their help to contact Biogen and your dad's legislators here in Dallas.

We're all thinking about you and your family, and you are all in our thoughts and prayers.

God Bless,

John Ansbach
B&B Alumni Network

Denise Hurst · 1 year ago

John, I used to work for Fred before it was "Baron & Budd." Obviously, it was a number of years ago, but I remember very well what a great man Fred was, and is. Please add me to the alumni group. I was there from 1984-1987. It grieves me that such a dynamic person is in this dire situation. My name, while employed at "The Law Office of Fred Baron" was Denise Brown. My prayers continue to be with Fred and his family.

Lawstudent · 1 year ago

John,

I'm doing a research project on Asbestos. Can you tell me the name of the person from Baron & Budd who wrote that memo that was given to plaintiffs in asbestos litigation? You know, the one that basically told them to lie so that they could get a big judgment?

Thanks for your help

Steve · 1 year ago

Want more red tape like this? Vote for Obama and his new state-controlled healthcare plan.

RIGHT lady · 1 year ago

That is so TRUE ... NO BAMA!

jjj · 1 year ago

Right.. cause this has anything to do with Government regulation jackass. It's about greedy self serving CEO fucks who give a shit about the public.

jrh · 1 year ago

You are kidding, right? decent healthcare for all doesn't mean you can't choose to take out insurance too - the UK's NICE system (which tells you what the NHS will and won't pay for) is just as screwed up as the FDA, but private insurance (eg Bupa) has way more scope to prescribe the things it feels are best for the patient, regardless of cost.

At least we don't let our sick live or die in poverty, paying for meds they can't afford, ripped off by insurance companies that have zero interest in their wellbeing.

It's not perfect, but it's better than what you've got.

RIGHT lady · 1 year ago

Why did your fathers MD's contact Biogen Idec in the first place? The MD's should have just prescrided Tysabri off label, enrolled him in TOUCH and set him up at an infusion site. It sounds like your fathers MD's are watching their backs by not prescribing Tysabri off label. There is the chance of PML but that is a small risk in that Tysabri has over 30, 000 patients worldwide on drug. The only form that Biogen Idec receives from your fathers MD is the TOUCH prescribing form where they sign that you have MS, WORD to the wise there are many drugs that MD's prescribe off label and sign the forms. Biogen Idec, Jim Mullen should have never been contacted and your fathers MD should have kept the off label discussion between them and your family and went ahead and prescribed. You have to understand that if BIIB allows your father to use the drug off label then anyone who comes to them they will have to grant them the same permission. Bottom line, the MD's should have stayed under the radar and prerscribed Tysabri off label, if they thought your father would benefit.

Sou · 1 year ago

right on. Equal treatment for all, not for just a handful of rich Democraps.

Spencer · 1 year ago

Have you considered formally requesting (perhaps with a message to local media) that the district attorney with jurisdiction over Mullen charge him with attempted murder?

Cath_SaveFredBaron · 1 year ago

PLEASE, PLEASE, PLEASE

Melanie Adams · 1 year ago

Andrew,
I was lucky enough to work at B&B for 12 years during the time your father was the managing partner. It was a great place to work, he treated all of the employees like family. It makes me angry that he can't get the help he needs when he has spent so much of his life helping others. I plan to contact all current and former B&B employees I know to start calling or emailing Biogen to put pressure on them. Good luck and you and your family will be in my prayers.

Lawstudent · 1 year ago

Melanie,

I'm doing a research project on Asbestos. Can you tell me the name of the person from Baron & Budd who wrote that memo that was given to plaintiffs in asbestos litigation? You know, the one that basically told them to lie so that they could get a big judgment?

Thanks for your help

Bill Cammack · 1 year ago

damn. Sorry to hear about this, man. Good luck. :(

Ashamed to be a PR rep · 1 year ago

Naomi Aoki: Your should be ashamed of your "job." I hope your "positive spinning" of a good man's potential death haunts you for the rest of your pathetic life.

Lexie · 1 year ago

Andrew, we have been praying for your father and your family. Your dad and step-mom have been so helpful in our cause to save our son's life from cancer and in dealing with the insurance company. I'm sure someone has already suggested it, but does your father show any signs of relasped MS so his doctors could prescribe this drug? The drug is also approved for Crohn's disease which many cancer patient unknowingly suffer from due to the havoc that chemo does to their intestinal tract. Maybe the doctors can test your dad for Crohn's.

Praying, praying, praying,

Lexie, John, Caden, Josh and Zach Ledbetter

pororo169 · 1 year ago

Letting Barron has his way will be a double standard: The rich has his way and the poor dies.

FDA is to be blamed for klthis because it made Biogen jump through extra hoops to get the drug approved and after approval, they use TOUCH to restrict its usage.

Also the press is to be blame because it has painted smears about tysabri, blaming Ty to have caused PML, cancer, liver damage, AIDS and impotence.

What's goes arpound comes around because Barron has made a bundle by suing the pharmas for the off-label uses.

There is justice after all!

Scorpaen · 1 year ago

I have no health insurance and if I were in Mr. Barron's place, I'd be a dead man.


http://astechnology.blogspot.com/2008/10/ethics...

The Dod · 1 year ago

Just wanted to say that I'm also behind you in your struggle.
I can't help much. I Don't have a "USA representative" to write to, but I'll try to spread the word.
Hope it helps.

Sou · 1 year ago

The Democrats who encourage litigation, the corrupted bankers who supported deregulations, the corrupted Wall Street investment firms who invented and proliferated CDS to a 40 to 1 margin are some examples of the current economic tsunami.

Asking these corrupted politicians to pressure Biogen is a mistake on your part.

Most American are piss off in the current system of injustice and special interest encouraged and supported by the big name politicians that you quoted.

You should be ashamed of yourself. What makes you think that you should be given special treatment???

Patty · 1 year ago

Dear Sou---
I am amazed that given the nature of this site, that you would so coldly make such a posting. This tells me that you never had a child that died because of negligence by a polluter, or your sister or brother never suffered the agony of a disease because they were never told they were working with a substance that would kill them. You never had a loved go into a hospital for a routine diagnostic test such as an MRI but then died because the doctors never read their chart to know they were allergic to the contrast dye.
Tell me, do you really think that everyone in their field and profession are qualified and competent? If you do, than you are dumber than a door knob. The very tenor of your posting indicates that you are full of negativity...I would love to be wrong with this...but where is exactly is your compassion for other? Or are you just self absorbed in self.

Patty · 1 year ago

Andrew,
I contacted Senator Casey's office yesterday for added help and influence to assist in getting this drug for your Dad.
How is he doing? Please tell him that he's my hero and someone in Pennsylvania is:
"Still Cheerleading, Hanging in There, Keeping 'Em Crossed & Wearing Boxing Gloves" He'll know exactly who the well-wisher is.
God Bless You, Andrew and your entire family...be strong and stay focused with positive.
Please give us an update as to how your Dad is doing.
Much Prayers and Love to you All---
Patty

Margaret152 · 1 year ago

I contacted Biogen and requested they give the drug to your father. I lost my father to cancer in 2000. I will keep you and your family in my prayers. My wish is we find a cure for cancer in our lifetime. My father's life was extended for seven years by using drugs designed for other uses. Keep up your fight.

carolynthompson-conwright · 1 year ago

I don't know much about the medical field and it's operations, but I do know god. I will sit here at my desk and pray that god delivers a miracle to you and your family. Believe and he will deliver

mgpearson · 1 year ago

Dear Mr. Mullen: I have copied your corporate goals and inserted them below. Wouldn't you agree that they include whatever permission is sought by Mr. Baron? "Patients, caregivers, and shareholders and colleagues deserve our best." Are shareholders patients...might they be? What is a patient? Your father, mine? How about our sons? Daughters? I would argue that Mr. Baron, in his career long efforts to obtain justice and proper healthcare for his clients IS your colleague. He is. Help him. Transform us by your inspiration and vitality, and renew Mr. Baron.
Michele Pearson, The Pearson Law Firm, Snoqualmie, WA 98065 P.S.

Courageous Innovation
We apply our knowledge, talent and resources to yield new insights and bold ideas. We confront challenge and uncertainty with zeal, tenacity and vision and seize opportunities to excel.

Quality, Integrity, Honesty
Our products are of the highest quality. Our personal and corporate actions are rooted in mutual trust and responsibility. We are truthful, respectful and objective in conducting business and in building relationships.

Team as a Source of Strength
Our company is strong because our employees are diverse, skillful and collaborative. We pursue our fullest potential as individual contributors, team members and team leaders.

Commitment to Those We Serve
We measure our success by how well we enable people to achieve and to thrive. Patients, caregivers, shareholders and colleagues deserve our best.

Growth, Transformation and Renewal
Consistent with our core values, we as individuals and as a corporation are dedicated to creative and constructive growth, transformation and renewal as a source of inspiration and vitality.

Sheep · 1 year ago

All of you lambasting the CEO perhaps even take a single minute to research the drug, its history and some of the regulations involved with this case before letting your emotions grab hold of you. Aren't you all supposed to be a tech savvy bunch?

You do realize that despite the unsubstantiated claims that the FDA has given its approval, allowing Mr Well Connected to receive this medication could jeopardize its availability or the label for the group of patients the drug has been approved (MS and Crohns) and even its potential as a future treatment for multiple myeloma patients don't you? Any associated AEs that are reported could have a very real impact on this drug in the marketplace or in clinical trials, like the one that is underway in MM.

Given the current regulatory climate, the quickness with which pharm/biotech is painted in broad strokes as pure evil, the tort environment and other factors... there are a number of reasons why you all should not be jumping to conclusions.

Justine Thompson · 1 year ago

AS someone in Britain who also has cancer I can only pray that all this madness over who does and doesn't get drugs comes to an end - and I really hope it ends here, with your father, and very much in his favour.
I'm thinking of you, Justyx

Jim90012 · 1 year ago

Death to a dirty rat!

Cuss · 1 year ago

Lawyer's who sue doctors are scum in my opinon. The mega dollar lawsuits which made John Edwards and Fred Baron very wealthy men in a short amount of time, ruined the careers of alot of good doctors in this country.

Amber · 1 year ago

Sou,

Please put politics aside. It doesn't matter if you're a Republican or Democrat. We all have the rest of our lives to live, and we all have people we care about deeply. I'm sure you - like the rest of us - could not imagine not having the chance to live tomorrow; or not having someone you love with all your heart be here tomorrow. I believe anyone of us in this situation would do what Andrew and the friends/families of the Barons are doing right now.

If you don't wish to help, then don't. But, to belittle those who are trying to help and to slam an entire political party to better your argument just makes you look desperate and pathetic. I truly hope that no one - including yourself or anyone in your family - ever has to go through a situation such as this.

Sou · 1 year ago

Do you want to save the life of someone who sue big pharmas for a living?

His ruthless action has delayed the developement of life-saving drugs. Many miracle drugs were shelved because of his greed. To be blunt, he has in a way murdered thousand of patients in pain and suffering. Could you imagine the kind of damage he has done to mankind? And womankind??

Do some research and you'll find Ty almost couldn't make it to the market because of the corruptions and greed of the FDA, lawyers, bankers, hedge funds and other abulance-chasing press meida.

Blame these creeps for the denial. Jim Mullen's heroic denial made my day.

Dallas · 1 year ago

Sou,
It is obvious that you have a personal bone to pick with Fred Baron. Please respect his family and their effort to save him and find somewhere else to vent your hatred. To say that Jim Mullen has made your day is your right. Please express it somewhere else.

As someone who watched my mother die with cancer, had I the positioning that the Baron family does...I would have used every effort on earth to try to save her.

littlehowie · 1 year ago

yall are in my prayers. i posted this on facebook and have friends going to their parents and friends for yall. this is absolutely ridiculous....

Sheep · 1 year ago

Its not ridiculous, you are ridiculous for not understanding the situation. While the FDA may be open to a compassionate use exception here, there could be some very real consequences for entire groups of patients current or future if Mr Well Connected receives this drug. If you are all outraged by this situation join up with Frank Burroughs and the Abigail Alliance and work towards policy change that may bring about a change in the dynamics of situations like this. Until then you sound like uniformed sheep being lead by a letter that leaves out much in the way of context.

del2543 · 1 year ago

Tysabri is a controversial drug used to treat Multiple Sclerosis and Crohn's Disease. Previously withdrawn from the market, it was reintroduced in 2006 with special requirements and restrictions that were required to get in back on the market.

Biogen is gun shy.

This is not in any way meant to condone their stubbornness. Your family has nothing to lose in trying this treatment; but, Biogen has already taken a huge hit over this drug and is, as a result, not willing to step outside the line.

Whether or not Tysabri is "solely" responsible for the deaths and additional side-effects that have been attributed to it . . . more investigation is likely needed.


http://en.wikipedia.org/wiki/Natalizumab

Darryl Mitteldorf, LCSW · 1 year ago

I've faxed a letter and left a voicemail. Yours is a tough situation that many cancer patients and their families face. I will forward your "open letter" to the rest of our staff, here, for their action, too. You are a good son to be lighting all the fires you can. I'm certain that your Dad's love echoes in you.
Darryl
Darryl Mitteldorf, LCSW
Director
Malecare, Inc.

Cuss · 1 year ago

Andrew Baron writes:

"Last Thursday, his doctors at the Mayo Clinic determined that he may only have about 24-48 hours to live."

It's been more than 150 hours since you were given 48 hours.....what's the deal?

Are you minipulating information to get your way?

Are you lying to the public about your father's conditon?

Amy · 1 year ago

Wasting so much bandwidth on a lawyer who contributed heavily to the Demo party is just ridiculous!

Go away Baron!

Mel · 1 year ago

That statement is so ignorant. So the bandwidth should be devoted primarily to one political party verses the other? An ill human being doesn't deserve to be cared about or discussed in a public forum because of his profession? Get a clue.

Greg · 1 year ago

Andrew,
I called and left a voice message to Mr. Mullen. This is hard to believe. Is there anything else I can do?

Greg Cusimano
Alabama

Rachael Fisher · 1 year ago

I worked with Fred at Baron & Budd (2001-2003) and he is a wonderful man. This is an outrage and I am sick to my stomache. I don't know how the "powers that be" at this company sleep at night. My prayers are with your family.

Rachael (Hayes) Fisher

PJ · 1 year ago

TO THE BLOGGERS: Sou; RIGHT Lady; Pororo169; Jim90012; Cuss; Wannabe & Amy:

Is there any among you with compassion or are you all totally void of decency? Is this because you feel slighted in this world with your under paid jobs for those of you who have one? Is the lack of understanding coming from your frustration and inability to handle your own situations because a GED or High School was the best in education you could do coming out of the trailer park? Maybe if you spent more time and energy trying to be positive and helping others in a positive manner, maybe goodness would reward you. What are you going to do on the day when your sitting in your car at a stop light and someone rams you from behind? What are you going to do when your costs are high and the insurance company won't fairly reimbursed you to compensate you for your loss and injuries? What? Are you just going to roll over and suffer and take the loss? I don't think so...I think you'd fight...and for that fight, you'd need a LAWYER...and you'd better have a damn good one. But given your attitutes, the bunch of you would probably represent yourselves. Sometime in your life...you WILL need a lawyer...Remember this...hate hates the hater. I feel sorry that you all hate yourselves so much and that you feel so insignificant. Now then, please go back to your usual and self rewarding routine of playing internet games.

No More Lawyers · 1 year ago

So you think we need lawyers so that we could sue McDonald's for that cup of hot coffee for millions.

I believe lawyers cost the US government BIG money, not to mention hospitals, doctors, insurance, real estate and others. Most of the drugs expenses are factor in the high cost of litigations. The entire FTC and US Patent Office are loaded with lawyers. So do the congress, banks and broker houses. With them sucking leeches, the world would become a better place to live because these suumbags have contributed nothing to the GNP. They just take from the shareholders of the losing companies and live it up in luxury.

jojo · 1 year ago

Get this on prime time news asap... CNN, MSNBC, Fox....
Publicize this.. Its just wrong...

billy · 1 year ago

Anyone seen the movie "John Q" with Denzel Washington?
Do what needs to be done...

Thomas M Gaubert · 1 year ago

Andrew:

Lisa's father is a doctor why does he not sign the prescription.

mark · 1 year ago

So his Law Firm makes millions of dollars suing drug companies for malpractice, but now that he's sick he wants the Pharma company to bend the rules and try something off-label?

Yea...ok...

DSE · 1 year ago

I'm sorry to hear about your father, but fortuneately for him, he has connections to the very politicans who have made off teh off label use of Tysabri illegal, and who would seek to limit all off label use of drugs. So many posters let their biases against drug companies decide who the bad actors are in this situation due to just plain ignorance.

Tysabri is one of the most if not the most heavily regulated drugs on the market. When you are done lobbying for your father, and I pray he pulls through, please keep the lobbying up, but this time due in opposition to Democratic efforts to make FDA the effective arbitrator of when and if a drug can be prescribed.

Alice in lost world · 1 year ago

Yes. Baron will sue Biogen after the patient dies with or without the release paper, after JM says Yes to Tysabri.

Baron had successfully sued big pharmas even though the trial patients had signed lthe release of responsibility papers. Check it out yourself.

Mark · 1 year ago

I am an investor in Elan, Biogen's partner and developer of Tysabri. I have also lost my spouse and mother to cancer and I can not understand any possible justification for withholding a potentially lifesaving treatment. Saving a human life should supercede all other considerations. Elan's CEO, Kelly Martin, always says Elan puts patients first. I would appeal directly to him.

Elan (http://www.elan.com) holds the biologics license in Europe for the MS indication and it also markets Tysabri for Chron's in the US. The companies share the revenue for all indications. The TOUCH program that restricts off-label use for Tysabri was mandated by the FDA when the drug was reintroduced in 2006. While there are about 32,000 patients using Tysabri for MS and Chron's, 2 more cases of PML were reported in Europe in August, and both Elan and Biogen lost much of their market cap as there was some concern about the drug being withdrawn again or significantly reduced uptake for MS. I forwarded your appeal to Elan IR, although they are likely aware of your situation.

Tysabri is available in most countries in the EU as well as Canada and there is no restricted use program like there is in the US, so it may be easier to obtain Tysabri for off-label use outside US.


Best of luck to you, and

Rick Ungar · 1 year ago

It makes one wonder what issues exist with this drug that are not being disclosed. While I recognize that time is very precious for your father, maybe the coordinated effort should be to ask Biogen what it is that so concerns them? If the FDA has agreed not to "count" the results in this one, special case in testing data, there should be no harm-no foul to Biogen... unless the usage would reveal something they prefer not to be revealed. Should we pressure them to tell us what they are hiding in the hope they will realize it is better for them to allow this than to create a concern over what they do not want anyone to know? I'm rooting for your dad. I have been through Non Hodgkins Lymphoma, a cousin to Multiple Myeloma. Very best of luck to all of you.

Alice in lost world · 1 year ago

Could it be the condition of Baron who is too weak to take Tysabri, a powerful immunosuppresing drug?

Without knowing his condition, we only guess he is fit to take this medication.

Maybe Jim Mullen knows something that we don't. Or maybe he has a grudge against tort lawyers in general.

Heidi Kirkpatrick Hedrick · 1 year ago

Please give your father a hug for me - my two small boys and I have him on our prayer list along with you, Lisa, the babies and your family.

Love and prayers,
Heidi Kirkpatrick Hedrick

Anonymous · 1 year ago

Andrew, your father and entire family have been in my thoughts today. Suffice to say " been there done that" from both sides, medical and patient. I always come down on the side of the patient who has done the research and has the resources. That he/she must be allowed free choice in such situations.

Please keep us updated on your dad's progress.

Kirsten Wilson · 1 year ago

Andrew!!!!! I am beyond thrilled to hear this news! Fred, you can do it! Fight!

Chris · 1 year ago

Andrew, I met you several years ago at your Dad's Christmas Party. (Old high school friend) I just heard about your Dad today (in the San Antonio paper). I'm glad to hear he is getting the drug he has wanted to try and am hopeful it will be successful. I haven't heard from your Dad in months and was wondering why he hasn't let me know about the twins, etc. Guess all this news explains alot. Tell him I'm thinking about him and Lisa and pray things will look up. I'll check your blog for updates.

Beau & Bonnie · 1 year ago

Fred & Lisa--We are praying and pulling for you! You are both talented fighters! You have all the abilities to prevail over this disease! Our best thoughts are with you. Your ex-neighbors .

Skeptics · 1 year ago

I checked with my neuro yesterday over the phone. He told me that Tysabri needs a washout period for at least 2 months before taking Tysabri. Without this washout period, Ty is such a powerful drug that it would kill the patient.

Two months!

But Andrew stated his father has only a few days to live. Yet, he openly solicited help from the influential Democrates so that they could pressure Biogen in OKing tysabri. Therefore if the plead is successful and the patient gets kill instantly, he could blame Ty and Biogen for negligence. It will be lawsuit city and wealth will be transferred from the shareholders to Baron's family again.

Also I believe he might be associated with certain hedge funds that shorted Biogen/Elan and try to create negative news to crash these companies.

angel50m2000 · 1 year ago

My father passed away four years ago with this exact same caner. At that point in time the only thing used was "thalidamide". Which help to prolong his life for about 2 years, I sympathize with you, because I know what you & your family are going through. Know that I am praying for you and hope that Naomi Aoki will be willing to help. I am a legal studies student at Kaplan University, living in Fort Worth, I will be watching this case closely.

Edgardo S. Pecson · 1 year ago

I was diagnose with CLL and Myeloma stage I last February and I'm sure I will end up like Mr. Brown someday. What I'm doing right now is praying a lot and think positive. so far all my lab test are all negative including a bone marrow biopsy. I pray a lot to Jesus christ and my patron saint St. Jude. I will pray for your Mr. Baron before I go to bed to night. Thursday is the day of prayer for me to to him it is a novena prayer. I wiil also pray to Father Damien from Aiea Hawaii for your dad. He cured a lady with lung cancer from Hawaii. He will be beatified by the pope sometimes next year. I will pray for Mr. Mullen also at Biogen to prescribed the drug for your dad.

ESP · 1 year ago

correction, I meant Mr. Baron, I should proof read beore I sent it. sorry

Tysabri User · 1 year ago

As a person with MS who has experienced the miracle of Tysabri, I wish your father the best in his use of Tysabri. I hope it works as well for him as it has for me. I have not had a relapse in 19 months, since I started Tysabri.

If something happens to take this drug off market again because of the adverse effects that may occur due to off label/ outside of the mandated TOUCH program use, because of your father's use of Tysabri, I hope all his lawyer friends will come and help those of us who are on this drug NOW, and need this drug monthly to keep our vision, mobility and cognitive skills. I went through the withdrawal from market once already and it didn't go well for the MS patients who are now disabled because of the withdrawal from 03/05-07/06.

stevie · 1 year ago

Money speaks.

In US, there is alway a double standard: One for the rich and another for poor.

If fred dies or comes down with PML, then Tysabri will be sheeet city. Reuters will headline:

"Tysabri Kills Again!"

Deece · 1 year ago

Andrew, I have know Fred and Lisa for years and they have been wonderful, generous friends. I've been distraught since I heard how ill he was and am delighted to hear he's being given a chance to try Tysabri. I hope for the best outcome of the treatment.

You and the family are in my thoughts and prayers.

Shafford McKinney · 1 year ago

Andrew:
My wife, Maria, takes care of your Mom's skin...We are praying for a miracle for your Dad! I met your Dad at the last Christmas Party, he and Lisa are very generous and kind to my wife and I. We are pulling for you guys!!!
Yours in Christ,
Shafford and Maria McKinney

Ed Berliner · 1 year ago

I am an old fraternity brother of your father's. I only found out by reading in the paper that your father is in very grave condition. My families thoughts and prayers are with you and of course Fred in hopes that this drug is the miracle that you seek. If there is anything I can do please don't hesitate to call me, I can be reached at my cell number 512-775-4256. I am in Austin and at your service. Edward Berliner.

TomKurtMD · 1 year ago

Congratulations Fred & Lisa on obtaining Tysabri! Our hearts are with you. Dr. Tom & Carol Kurt

Patrick Boggs Jr. · 1 year ago

Andrew,
I sympathize with you as I lost my father to multiple myeloma just last month. Not a day goes by with out me questioning wether he would still be with us if I had pushed the doctors to be more agressive with his treatment. I can honestly say that without a doubt your persistance has has extended your fathers life to the fullest extent. Bless you and your family at this very difficult time.

Dave · 1 year ago

Can we please get an update?

He received Tysabri a day ago. Is he seeing improvement yet.

Wendell Wood · 1 year ago

Hope TYSABRI along with the good folks at the MAYO CLINIC, helps save your dad's life! When your dad gets better, perhaps he can help the MAYO CLINIC publicize the TYSABRI clinical trials for myeloma.
Right now, the MAYO CLINIC doesn't even show on it's clinical trials website that there is a trial with TYSABRI for myeloma. Nor does the clinicaltrials.gov website for the "natalizumab trial for myeloma" mention either the MAYO CLINIC or TYSABRI....
....so I wonder how others might sign up....when your dad improves.
Wendell Wood, Fairborn, OH

Lawana Wright · 1 year ago

So very thankful your Dad received the drug...FINALLY!!!! Please keep us updated on your Dad's condition and he will be in my prayers for a speedy recovery. Thank God for his helping hand in this situation also!! Special thanks to all those that took their time and influence to get your Dad the medicine he so badly needed! My son told me earlier this evening about your letter in the Dallas Newspaper and we were all concerned about your ordeal and your struggle to save your Dad's life. Your determination and all your efforts, even when it seemed a losing battle, resulted in "justice" being done in this matter. Your Dad should be very proud of you ......and I'm very sure that he is. Best of health to your Dad in the near future. I understand how you feel because my husband also suffers from this horrible disease. Sincerely

rolled · 1 year ago

It was not Biogen that "arranged" for the drug to be limited to approved uses, but the FDA that does so.

Biogen does have MM trials ongoing now - open label and a limited # of patients (42 I think.)

Shava Nerad · 1 year ago

I am so sorry I didn't hear about this earlier, but glad you got access. I live in Cambridge, MA, and could have gotten a crew of activists and/or geeks to arrange for media coverage of a protest at their offices. Sometimes people need a good reason that dealing with the situation is easier than not dealing.

Prayers/vibes with you and your family.

Testuser · 1 year ago

In Ireland is already one clinical trail running.

http://www.fiercebiotech.com/press-releases/fir...

Richard J. Haas · 1 year ago

Andrew;

In a sense your family's struggle parallels a struggle my family endured and was resolved by the incredible work of the Mayo Clinic. My deepest concern and all of my prayers are with you and with your mom and dad. I still suffer for the impact my situation imosed on my kids. So my thoughts are with you. Your dad helped me out once and got me in to see John Edwards. I doubt that your mom or dad would recal me but I will always regard them and their work with appreciation and grattitude. It seems like a hollow offer but if there is anything I could do from this time out I would like to be part of the spiritual power that seems to come together when miracles are needed. If there is a place to hope for miracles the Mayo clinic is sure a super spot. Stay strong and remember all the reasons why your mom and dad are loved by so many. I am just one but one who would do my part in battle for them were I only told how

I have heard no news since October 18, 2008 and they are in my thoughts.
.
Richard J. Haas

Wendy Hilleary · 11 months ago

Andrew,
Please let me know how your father is doing. My father also has multiple myeloma (aged 62).
Thanks,
Wendy Hilleary

Steven Chang · 7 months ago

I know a good alternative treatment for this cancer:

http://www.treat-cancer.info/

Good luck!