Cafe Witness

Thursday, September 13, 2007

(Maybe) Twitter Saves Lives - And How YOU Can Help

Len Edgerly twittered today:
My mother, 78, has MS & is about to run out of Cylert aka Pemoline, a drug taken off market by FDA in 2006. She depends on this to function... We found a forgotten supply of Cylert in Casper, Wyoming last year and have scoured the world looking for more. Anyone with pharmacy links? ( Cylert was taken off market because it caused liver problems in some children. Not a concern for Mom. She also uses bee stings to fight MS.)

I've never met Len, and our tweets usually pass like ships in the night. But this struck me as one of the most important potential uses of Twitter -- to exchange real-time IMPORTANT information with people who may be able to help.

Never mind that half the people in anyone's Twitterstream are complete strangers, connected only by a vague interest in one another's work, or hobbies, or shared geography. When someone needs help, there's a basic human urgency to help that person.

I don't know anyone who works in the pharmacy world -- but I do know a lot of people. (So does Len -- he'd just Twittered to Robert Scoble moments earlier.) And so do the people I know. Surely, somehow, someone we know must be able to help Len Edgerly out.

Perhaps the folks behind Twitter can get involved in the effort as well -- if only for the free publicity. After all, as Len twittered a few moments later:
Mom jokes she'll get a tatoo that says "I'm here because of Twitter" if my effort to find FDA-banned Cylert aka Pemoline for her MS succeeds

Now wouldn't THAT be a positive social media story?

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  • I don't have any connections in that field but I'm more then happy to push it out to my twitter tots to see if someone can help.

    By Anonymous C.C. Chapman, at 10:57 AM  

  • Mom's getting worried about the tattoo idea :-) but just now she told me she might agree to put a Twitter logo on the bottom of her foot. She's a refined Cambridge lady not otherwise likely to consider a tattoo. She is simply thrilled at the early response from the Twitter World, and very appreciative. Thanks very much for spreading the word, Justin and CC!

    By Blogger Len, at 11:07 AM  

  • Likewise, I'm far too far away to help, if it were in London or Italy we'd sort it...

    I will help spread the need though.

    Best wishes.

    By Anonymous Chris Hambly, at 11:09 AM  

  • Great idea - clipped to see if clipmarkers can help and reblogged for blog readers. Hopefully someone in our network will have a hook up!

    By Blogger Eric Skiff, at 11:13 AM  

  • Howdy.

    I don't work for Abbot (A quick Google search led me to believe that they're the originating manufacturer), but I am in the pharma biz. Please realize that what I'm going to share is my understanding of what MAY happen but not what WILL happen... sorry, need to do a CYA here.

    You may have already tried this, so if I'm duplicating effort... I apologize.

    If the drug was pulled for indication reasons, and the company deemed that the drug was profitable enough to do more studies to counteract the pull, they may still have some on hand. The company may make it available to consumers who are willing to sign a disclosure form exonerating the company from side effects that caused the brand to be pulled off the market.

    Giving a call to the company's indigent care program may be the first, best place to start. If you call the company directly, they may give you a standard response. If you call them and ask for their indigent program, they won't answer your question, but you may get a person more WILLING to try to answer your question.

    That's all I can think of right now.

    By Blogger Brad P. from NJ, at 11:18 AM  

  • hello! sorry, i am in Pune, India. I wish Len and his mom all the best. Thanks, Justin and C. C. Chapman, it was very kind of you to post and twit about this.

    By Blogger Ravi Karandeekar, at 11:20 AM  

  • I have Abbott's company directory. Why don't we ask someone there?

    By Blogger Christopher, at 11:23 AM  

  • I also work in Pharma and Brad is spot on with his suggestion.

    Abbott was the original manufacturer and Sandoz made (or was to make) the generic, so I'd try both of them.

    By Anonymous thejim, at 11:40 AM  

  • Brad P. Thanks VERY much for your suggestion. It looks as if Abbott was losing money on it before FDA action, which may mean they kept none for further study. . But we'll definitely follow up on the indidgent care program.

    By Blogger Len, at 11:48 AM  

  • Brad, I just called Abbott Indigent Care Program and did, as you predicted, find someone very willing to listen to my mother's problem. She checked with a supervisor and came back saying simply, "There is no more Cylert." She suggested trying to get the generic, pemoline, but that seems to be unavailable because the ingredients have been banned.

    By Blogger Len, at 12:13 PM  

  • Sent an email to my cousin, who's in pharmaceutical sales (different company). She said she would check with some Abbott folks she knows.

    By Blogger Uncle Crappy, at 1:30 PM  

  • The Wikipedia article on Cylert said that the Narcolepsy Network fought the FDA ban pretty hard. Try calling them and seeing if they may have a resource for another way (Canada?) to get the drug:

    Also placed a call to a couple friends in med school on the off-shoot they have an idea.

    Good luck!

    (But the real question: how did you tweet all that? Multiple tweets I assume?)

    By Blogger Marina, at 1:53 PM  

  • Some people think that the use of twitter is something unnecessary but we can know a lot of people who can help in situations like those.m10m

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  • By Anonymous Sylvester, at 12:28 PM  

  • For my part every person should read it.
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    By Anonymous Vergil, at 7:39 PM  

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