Monday, September 30, 2013

Ethical dilemma on a cancer drug

I have been mulling this over for a few days. A woman in Texas, Andrea, with stage IV ovarian cancer wants BioMarin to allow her to receive a new drug BMN 673 which has not yet been approved for treatment. Her doctor thinks it  might help her. She hopes it will help her. She understands that it may not help her but it has helped others. There is a big debate going on.

I completely sympathize with her that she wants to try everything possible to stay alive. She and her doctor have been lobbying BioMarin to get the drug. The company is not agreeing , saying it is still in clinical trials and has not yet been proven. They could add her in the clinical trial - but she probably does not meet their criteria. It could help her but it also could mess up their data.

This is a real ethical dilemma and I hope for the best.

What I dislike about this and makes it smack of I'm not sure what. She hired a PR firm who is working for free to publicize her case. Its in the news - national and local here in Boston. She has a change.org petition going. Its all over Facebook.

I just want to say what are you thinking? That you can generate some media hype to change their mind? I was all for this woman but when I found out she has a PR firm creating the hype for her I'm not so sure.

2 comments:

Karen Sloan said...

Caroline,
This is Andrea's mother. Let me ASSURE you that Andrea has not hired a PR firm. She has not hired anyone. We are not wealthy people. Andrea works for a nonprofit organization; she by no means makes a corporate lawyer's salary. She is a 45-year-old woman with BRCA positive cancer who wants to survive so she can see her niece and nephews graduate from high school, so she can continue her work as a domestic violence advocate, and--yes--so she can have fun. For seven years she has made the best of a horrible situation (5 bouts with ovarian cancer) & has come out calling her life "rockstar." That's a relative term. It bespeaks her basic personality and her zest for life.
From July 19th until the middle of August, she tried everything imaginable to get BioMarin to engage in dialogue with her about compassionate use of BMN 673--only after her oncologists recommended that she approach them AND the FDA had looked at her information and said she was an "excellent candidate for compassionate use" providing the company would request it. We understand that corporations are not required to grant compassionate use of their preapproved drugs. There are any number of reasons it made sense for Andrea to request BMN 673, not the least of which was the company's own hype about their PARP inhibitor. If you would like to engage in private conversation with me, I would appreciate discussing Andrea as a human being and a fellow cancer sufferer--not as a self-made media queen. My email is karenssloan@gmail.com Thank you so much for reading my comment. I sincerely wish you all the best.

Karen Sloan said...

P.S. CNN made an error in saying Andrea had hired a PR firm. They need to made a a public retraction.