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.
What can everyone else do to help Andi Sloan?
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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.