I just found out that Frederick Baron, the father to Andrew Baron(founder of Rocketboom), is dying of multiple of multiple myeloma with doctors giving him days to live. That was last week. He is still fighting.
Amazingly, there were a few problems after that. One of his doctors found a drug that could possibly be used to treat his father. Now here’s where the problems start. The drug wasn’t FDA approved but the approval process was fastracked because Andrew Baron was well connected(Read the open letter). So with that out of the way, everything should be good right?
Wrong. The drug, Tysabri, is manufactured by a company called Biogen Idec and their CEO, James Mullen is not allowing the drug to be used.
From what I gather, the reason that the hospital can’t just prescribe it for this use(yes, they already have it) is because “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.”
You can follow the discussions over at Techcrunch or at Andrew’s post.
I think the necessary approvals and indemnities have been arranged. I don’t see why this isn’t getting the go ahead.
If you’d like to leave comments and suggestions, consider leaving it at their pages where the information will trickle to them faster.
UPDATE: They’ve got the Tysabri (Source)
OPEN LETTER TO JAMES C MULLEN, CEO of BIOGEN
**URGENT**
cc: Lance Armstrong, President Bill Clinton, Senator John Kerry, Senator Tom Harkin, Senator Ted Kennedy, Andrew von Eschenbach (Head of FDA)
Mr. Mullen, my name is Andrew Baron and my father Frederick (61 yrs. old), has final stage multiple myeloma has been recommended the drug Tysabri as a last chance effort for life.
Please read this carefully.
Last Thursday, his doctors at the Mayo Clinic determined that he may only have about 24-48 hours to live.
In what can only be defined as a miracle in timing, a few days ago, one of his doctors who has been studying his tumor cells in the lab for years found an antibody with an exact match: Tysabri which is manufactured by your company, Biogen Idec. In the test tube, it attached to the antigens on the surface of the tumor 100%.
Though the drug has never been used before in this way, and because time is running out, the head of the FDA, Andrew von Eschenbach has granted special approval for use of the drug for this purpose but you have personally decided “no”.
Lance Armstrong, who you spoke with on Friday, has also pleaded with you to say “yes” to my father, but you personally said “no”.
President Bill Clinton, Senator John Kerry, Senator John Harkin, Senator Ted Kennedy, Andrew von Eschenbach and others who you spoke with on Friday and again yesterday on Monday have all pleaded with you to say “yes”, assuring you that there would be no legal risk and no negative consequences to your company if something went wrong, but you continue to say “no”.
If this drug was rare, scarce, or if people were waiting in line to obtain it, we would not be expecting any privileges. But the drug is readily available, cheap and even sitting in our clinic’s pharmacy just 6 floors below us right now… . All we need is for you to just say “yes” to save his life.
I’m the CEO of my company so I can appreciate the pressure of doing what’s best for your company. Is denying my father access the best thing for your company? How could it be? What’s the risk?
What is the justification? No one knows. We have gotten back reports from everyone that spoke with you and others at your company and they do not see any justification as to why. All I know is “No because no”.
The very best doctors in the entire world from the Mayo clinic which is one of the most experienced treatment centers in the world have recommended this drug to save my father’s life and it’s the only thing known that could work.
After you refused on Friday, the doctors decided that they must do something, and resorted to another antibody called Campath which is working to prolong his life.
Please Mr. Mullen, there is no time left. There is no justification. Just say yes.
To anyone else who reads this: Please help! My father is a saint who has given his life and his resources to better humanity. He has spent his entire life seeking to protect the rights of others from harmful death and has spent an enormous amount of money and time in helping to shape our government to protect the rights of people everywhere. He is a philanthropist at heart.
1. Call Mr. Mullen or anyone at Biogen and ask them to please say yes (or provide a justification for whynot). Speak with anyone in the company in any department that you can find: http://www.biogenidec.com/site/contact.html
2. Contact an elected official and plea with them to call Biogen to seek approval:
http://www.usa.gov/Contact/Elected.shtml
3. We have been searching all over the world for international options and continue to look for a country that we could fly to to obtain and administer the drug. Do you know of anywhere that we could go? So far we have found that by law, Biogen controls use in every country that the drug is distributed in.
4. Do you know of any options in alternative medicine?
5. Do you know how we can obtain this drug?
Please comment here, email me at andrew@rocketboom.com or post and discuss here: http://friendfeed.com/rooms/myeloma
We are trying to figure out what to do.
Related posts:
President Bill Clinton huh??
yeah, he's got really good connections apparently
Oh…if you're referring to the title 'President', then american presidents retain their title even after their terms of office.
I also read somewhere(I can't verify though) that they also retain all their security clearance and such. Not sure how true this is though…
Why does he deserve a special treatment?
Using these political hotshots might be harmful for the plead. Can you see these guys have already done a lot of harm to the US economy?
Hmmm…I can see where you're coming from when it comes to using the political hotshots. But stiill… the central issue is that indemnities have been given and someone's life could be saved. What negative repercussions could possibly result from that?
Does simply because he's pulling strings mean a life should be discounted just to make a statement that 'no one deserves special treatment'?
What negative repercussions could possibly result from that?
The other articles touch on it – if his father dies, this drug (which is already undergoing a Phase I study for cancer) could be delayed, costing thousands of patients the opportunity to use this drug in the future. This drug is not approved for cancer treatment – it takes hundreds of patients and millions of dollars to determine whether a drug is safe and effective. All of that research is in jeopardy if Mr. Baron cuts in line and takes the drug. Biogen isn't being inhumane, they are looking at thousands of future patients who will benefit from a thorough study of the drug, not the one patient who may or may not…
Hmm…I was under the impression that the indemnity they received also covered that the outcome of this would not be included in the trial results?
Either way, they've received the drug. Hope something good comes out of it.