patient foundations

This interview was originally published on July 11, 2013

Guest: Bonnie Addario, Founder, Bonnie J. Addario Lung Cancer Foundation

Chapters: (Advance the marker)

0:46 Personal triumph over lung cancer

7:16 If you're passionate about an injustice, do something about it

11:38 Don't bring your Powerpoint presentations

17:25 Overcoming a stigma: anyone can get lung cancer

20:07 Going around the broken bureaucracies

25:32 Life science, pharma need to value the patient

30:16 BONUS: The man and the starfish

Bonnie Addario says there's a stigma with lung cancer that has held back research and therapy for what is the biggest killer of all cancers. And she should know. She's a lung cancer survivor and founder of a patient foundation dedicated specifically to this kind of cancer. Because lung cancer is associated with smoking, she says, too many people have an attitude that patients bring the disease upon themselves. But that's not always the case.

"70% of newly diagnosed patients either never smoked at all or quit smoking decades ago. And, more and more, very young people are getting lung cancer who were never smokers," Bonnie points out, calmly yet firmly making do with her one remaining vocal cord.

And what happened to her other vocal cord? It was removed during a new surgical procedure that saved Bonnie's life. A successful business executive, nine years ago Bonnie went to the doctor with chest pain. After a diagnostic odyssey, a full body scan--which Bonnie sought independent of her doctor-- revealed a tumor on her lung. Bonnie's personal involvement in her own treatment would time and again make all the difference.

"I was never going to die of lung cancer," she affirms. "It just didn't compute."

Making her way through treatment that included chemo and the surgery, Bonnie would bring her tremendous energy and will to helping others. Reading anything she could on the internet, Bonnie found that the survival rate of those with lung cancer had remained at 15% over the past forty-five years. Over those forty-five years, 50 million people around the world died from lung cancer.

"I couldn't accept a survival rate of 15%," she says on the show. "Especially when you're seeing breast cancer survival rate up in the 90 percentile, colon cancer in the 80 percentile, prostate cancer at 99%! I wanted to know why. And I learned that it really was nothing more than a stigma. People felt that those with lung cancer brought it on themselves, and they shouldn't spend a whole lot of money changing that."

Bonnie then established a foundation in her name, the Bonnie J. Addario Lung Cancer Foundation with the goal of raising this low survival rate. Acknowledging that smoking is a leading cause of most cancers, heart disease, and vascular disease and pointing out that she in no way advocates for smoking, she knows that the foundation must address the smoker/cancer stigma.

Patient foundations are making a difference in biomedical research today because they are in a unique position to go around the bureaucracies in the healthcare system and in academic research. And they do it all with the patient first and foremost. Led by this formidable cancer survivor, the Bonnie Addario Lung Cancer Foundation is funding new research, and raising awareness and hope around the world for those with a very lethal cancer. Hear Bonnie's story and how the foundation is making a difference in today's show.

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Guest:

Scott Johnson, President and Founder, Myelin Repair Foundation Bio and Contact Info

Chapters (Move marker to advance)

1:13 Focus of the Foundation

2:24 Personal struggle with MS

3:51 Coming at medical research with fresh eyes

12:09 How are you incentivizing your research partners to share in real time?

22:05 How are you bridging the translational gap?

28:45 "I was reading Newsweek one day and . . ."

34:38 Getting into the Gordon Conference on myelin without a Ph D

37:30 Is this the better model for drug discovery?

39:43 Raising funds for a non-profit

As we noted in a recent blog about patient involvement in the industry, there is a growing trend for patient disease foundations to get directly involved with drug development. Today we’re at the offices of the Myelin Repair Foundation, a patient foundation which has come up with a new model for developing drugs for multiple scelerosis. And a model which could perhaps be used by many others to create cures for disease. Joining us is the founder of the foundation, a man diagnosed with MS himself, Scott Johnson. I typically ask guests where they get their passion, but there's no need to as Scott as he recounts going from being an entrepreneur in the entertainment industry to developing and leading a new model for medical research.