patient stories

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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Guests:

Tim McDaniels, PhD, Director of Scientific Research at Illumina
Bio and Contact Info

Listen (5:07) Mom diagnosed with rare T-cell cancer

Listen (7:50) Path to genome sequencing

Listen (5:56) Finding two key genes leads to unusual treatment

Listen (5:30) Regression, then reoccurence

Listen (4:54) How has this changed your view of health?

Today's story is a roller coaster of a ride. So far genomic medicine continues to be about those patients who by chance come across someone with knowledge of the latest in genomics.

Tim McDaniel is a Director of Scientific Research at Illumina, and so was in a unique position when his mother was diagnosed with a rare T-cell cancer. In the beginning of her illness, which first manifested as a nasty skin rash, Tim's mother, Beth, was in that "wilderness of rare illnesses." Her chance upon a doctor who had some experience with her cancer was just the beginning of this up and down tale. Tim attended the AGBT conference in Marcos Island, FL as part of his job at Illumina. There a new world opened up to him as he sat in on the presentation of an exciting story of genomic medicine. He encouraged his mother to have her genome sequenced which led to some helpful findings.

The plot of today's show, along with Tim's natural talent for storytelling will keep you on the edge of your seat.

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Guests: Jay Lake, Sci-Fi Author Bio and Contact Info

Joseph Edward Lake, US Ambassador Bio and Contact Info

Listen (6:05) The term patient implies waiting - and waiting kills

Listen (3:34) The medical bureaucracy very challenging for a patient

Listen (7:30) Health is a privilege

Listen (10:46) Whole genome sequencing not clinical yet

Listen (2:13) Who is creating the future?

Today we begin a series, The Age of the Engaged Patient. Jay Lake is a sci-fi writer and compulsive blogger. He is also a patient. He joins us for today's program with his father, Joe, to talk about his struggle with colon and lung cancer. As is often the case with patient stories, patient can imply a team working together for the health of one individual.

Jake is very open about his cancer and his life as a patient. He blogs often about his daily medical experiences and has built up a large following in addition to his sci-fi fan base. "If I can use my storytelling skills to explain cancer, then I've beaten the disease," he exclaims in the interview. What do Jay and his dad think about the term patient? And what message does he have for our audience of life science researchers? Jay recounts his adventure with whole genome sequencing and is honest about how "painful and difficult" this aspect of his treatment has been.

Podcast brought to you by: Chempetitive Group - Who for more than a decade has helped science-based companies build and execute innovative marketing campaigns. "We love science. We love marketing. We love the idea of combining the two to make great things happen for your marketing communications."

Guest:

Melinda Richter, Founder, Prescience Bio and Contact Info

Listen (10:28) How are you accelerating the commercialization of life science technology?

Listen (7:47) Innovation centers helping out startups

Listen (2:55) Educating entrepreneurs

Listen (8:27) Jumping the financial hurdle

Lying in a Beijing hospital bed waiting and waiting for a diagnosis, Melinda Richter, a telecom executive on assignment in Asia, had one of those look-death-in-the-face experiences. "We're here once only, and we have to live our time well," she says in today's interview.

This brush with her mortality propelled Ms. Richter to do something that made a difference to others. This led her to the life science industry, where she found much greater hurdles to entrepreneurship than she had seen in high tech. Asking herself what she could do to help startups and speed up the time for commercializing what is some great technologies led her to found Prescience International. Prescience runs two 'innovation centers', San Jose Biocenter and Janssen Labs in San Diego. In today's show, Melinda describes what these incubator spaces are doing to help lower the barriers for life science startups to get off their feet. Prescience also offers courses for entrepreneurs to get hands on training industry leaders.