An Open Letter to BioMarin Pharmaceutical – BMN 673 and Compassionate Use

UPDATE: Jan 2, 2014. Sadly, after a gallant 7.5 year battle with cancer, Andi Sloan passed away last night. Her mother posted this on Facebook:

Thank each of you for enriching Andrea’s life in more ways than we know. She took every friend, every blessing, and every challenge, including her 7-1/2 year battle with cancer, and turned them into a ROCKSTAR life. Too brief? Yes. But she lived each day she was given with “no regrets.”

Andi never received the experimental medication discussed below. Another pharmaceutical company stepped up with a different med, and bless them for that. But it was apparently too late.

Rest in peace, Andi.

—–

Dear BioMarin Pharmaceutical –

Have you seen this video? Please take 7 minutes and 13 seconds to watch it. I know you’re busy. But it’s just 7 minutes. I’ll wait for you.

Fair warning, you might want to grab a couple of Kleenex first…

I don’t know Andi Sloan, never met her. I do know some of her family though, and they are world-class human beings. That sort of thing tends to run in families, and I have every reason to believe Andi falls squarely into the “world-class human being” camp.

She is an attorney in Austin, and the Executive Director of the Texas Advocacy Project, which provides free legal services across Texas to victims of domestic violence, sexual assault and stalking.

Few could argue that is not a noble cause.

As you saw in the video, Andi is sick. Very sick. For seven years she’s been battling cancer. Think about everything you have seen and done in the last seven years. That’s a long time.

I will freely admit that I don’t know a thing about BMN 673. Until a few days ago, I’d never heard of BioMarin. You seem to have a great company that has, and is, creating some wonderful medications. Looks like you focus on “orphan drugs” and to that I say, thank you.

Clearly you care about the patients that receive your medications. Your patient stories are remarkable. You put this right on that page, and I believe you.

Patients are our passion at BioMarin.

Patients are at the heart of everything we do. They inspire us, they teach us, they compel us to work as quickly and efficiently as we can to find therapeutic solutions for their most serious medical needs.

Much like I don’t know the in’s and out’s of BMN 673, I also don’t understand all that is involved in clinical trials, “compassionate use”, the FDA and what I’m sure is a ridiculous amount of bureaucracy, legalities and liabilities.

But surely there is something that can be done to help Andi. I keep hearing things like you can’t help her because you don’t have a compassionate use policy for BMN 673. Well, draft one. Write a disclaimer that says you can’t be held liable, for anything. You’re a $9,000,000,000 company, surely you’ve got a cadre of lawyers on retainer that could crank something out swiftly. Is cost an issue? There are literally thousands of people out there, Andi’s Army, that I’m certain would help pay for it. I’ll write the first check.

Sorry, but “we don’t have a policy” is a lame excuse. An excuse that can, and should, be fixed. Now.

The world-renowned doctors at MD Anderson Cancer Center and executives at the FDA have said that Andi is an excellent candidate for compassionate use and that she qualifies for single patient access.

Sounds like the ball is in your court now.

You’re being pitched a big giant slow-hanging curve, and you have an opportunity to crush it and knock it out of the park. If you can’t / won’t do it for Andi, and all those that love her, be selfish and do it for yourselves and your shareholders.

Please, please do the right thing. Andi goes back to the hospital, AGAIN, later this week. You have an opportunity here to do something I think is rare in the big pharma world — make a humanitarian decision to help one person. Andi’s fought for seven years, and she’s not giving up. Help her win this battle. Show the world that a multi-billion dollar pharmaceutical company is compassionate and caring. The PR you would get from this — regardless of the ultimate outcome — would be overwhelming.

And you’d give a remarkable woman the hope she so desperately needs.

Regards,
Jay Thompson

What can everyone else do to help Andi Sloan?

Please sign the petition at Change.org

Join the Andi’s Army group on Facebook

Like the Andi’s Army Facebook page

Share this post – CLICK TO TWEET

Don’t want to share this post? No problem! Tweet anything using #BioMarin and/or #BMN673. Possible suggestions:

RT @andi_sloan: My doc appointment is Thursday!! #Biomarin please find it in your heart to let me take the drug! #BMN673 — CLICK TO TWEET

#BioMarin Docs say yes. FDA says @andi_sloan is qualified. People at her hospital are taking #BMN673. Why is it safe for them but not her? — CLICK TO TWEET

#BioMarin Pharmaceuticals: Allow @andi_sloan to take their experimental drug, #BMN673. http://www.change.org/petitions/biomarin-pharmaceuticals-allow-andrea-sloan-andi-sloan-to-take-their-experimental-drug-bmn673 via @change — CLICK TO TWEET

In other words, light up social media. Help spread the word.

Andi Sloan, with her horse Heathen.

Andi Sloan, with her horse Heathen.

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Comments

  1. Karen Peterson says

    From a member of Andi’s Army, THANK YOU for this letter. Andi is not giving up, and we are not giving up on her. Thank you, Jay, for your words and for joining the fight for a woman who for so long has fought for others.

  2. Karen Sloan says

    Fellow Commenters: Keep your comments short or you will receive an error page & lose your comment when you try to submit.

    Quickly–Jay, I am Andrea’s mother and you are the hero of the day. Beautiful article, great links, etc. Twice I tried to post the story of the Good Samaritan but guess it made my comment too long. You exemplify the man who defined a friend as anyone in need.

    • phxreguy says

      Karen – your daughter sounds like an amazing woman. Such a delight! Hang in there, Andi has a LOT of people pulling for her!

      Are you Gordon’s sister? I used to do a little consulting with him awhile back. He’s a good man.

      • Karen Sloan says

        I am Gordon’s sister-in-law. I married his younger brother, John, 47 years ago. So I certainly FEEL like a sister to Gordon. I was most fortunate to marry into the Sloan family!

  3. says

    What a wonderful letter, Jay. You have such a strong following, I hope your plea will get the attention of BioMarin Pharmaceutical and they will help her. I posted your letter on Twitter, Facebook, LinkedIn and Google+. I hope an internet response can help Andi. Thank you for all your good works!

    • phxreguy says

      Thanks, Berna! When Chris and Gordon let me know about Andi’s battle, the more I read about her, the more remarkable she sounded. She’s a *fighter*!

  4. says

    Thank you Jay. This was a beautiful thing to do for a beautiful person. As someone who loves Andi Sloan, she deserves this from everyone, the fact that you did it for her as someone who doesn’t know her personally is truly inspiring. I hope you get to meet her soon as she is truly a gift to us from God.

    • phxreguy says

      I’d love to meet Andi, Daniella. I lived in Austin for 20 years and consider it home. I don’t get back as often as I like, but when I do, meeting Andi is at the top of the list!

  5. says

    My mama died of ovarian cancer in 2010 and how we WISH there had been other options for her. I have signed, tweeted and Facebooked. And now I’ll say a little prayer. KEEP FIGHTING, ANDI! We are all pulling for you.

  6. Kelley Kavanaugh says

    Thank you! Your take on the story got in all the good, valid points! We’re hoping there’s more heroes out there just like you who do the same! Thank you!

  7. Tamara Kruse says

    Jay, you read my mind! EXAAACTLY!

    A company of that size, that fiscal worth, that BRAIN POWER — is taking the cowardly way out…not because they are being “cautious,” and not even because they fear a dark cloud over their incomplete testing, should Our Girl not get the desired results…but because they are apparently content to leave their expression of power at a bureaucratic, unexplained (to the satisfaction of intelligent minds) “NO.” You hit the nail on the head, prophetic author: DO SOMETHING! Don’t have a policy? DRAFT ONE! There was a day when you didn’t have a drug to fight BC and OC…and you MADE ONE!

    BioMarin, your mission statement and your due diligence are not walking down the same aisle. You are squirming and hiding behind a host of excuses that could just as easily, with all you have available to you, be converted to an ethical energy that puts your motto where your mouth is.

    I wonder, of course, how quickly you would design a test protocol — or flat-out grant the compassionate/single-patient use — if Andrea were YOUR loved one…and you knew you controlled the greatest chance she had left…to live.

    What a vital and MUTUAL OPPORTUNITY to advance the current relationship between Big Pharmaceuticals and the patients who stock their faith (and life savings) in them, and to redeem the pervasive belief that pharmaceutical companies, the FDA, and our government don’t REALLY want to give people the cure, because to do so would eradicate a huge income stream and tax base. The opportunity to do not only the RIGHT THING, but the UNPRECEDENTED THING, is being prayerfully, earnestly, trustingly handed to you on a silver platter.

    IF NOT FOR ANDREA SLOAN TODAY, THEN FOR WHOM…AND WHEN?

  8. Julie Strickland says

    Andrea Sloan saves lives. Real people’s lives. Often times, lives of mothers with children, and as a result she ensures children have better futures, positivity in life, hope, and faith in human kind. It is time to “pay it forward”. It is not hard to determine the right course of action here. This is not a pondering ethics question of who would you save if you only had one opportunity: the doctor who saves lives? the child with a future? the family adult who cares for the well being of other people? Andi fits all of these….and there’s more than dose of BMN673. Like you stated so well, “you don’t have a compassionate use policy for BMN 673. Well, draft one.” Thank you Jay. I’m sharing your blog.

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