tALK+ Initiative November Lung Cancer Awareness Month [transcript] [audio]

Guest: Bonnie J. Addario

Presenter: Neal Howard

Guest Bio: Bonnie J. Addario, Founder, Chair & Lung Cancer Survivor, has been an activist, advocate, educator and change agent empowering patients and giving them a strong voice in the fight against lung cancer since receiving a stage 3B diagnosis more than a decade ago. Although thrust into a role that she had never envisioned for herself, she embraced it and now considers it to be her second career and a personal calling. Recognizing the critical need for education, empowerment, advocacy and research to help patients and families, especially those without resources and support, Bonnie and her family founded the Bonnie J. Addario Lung Cancer Foundation (ALCF) in 2006, and then went on to found the Addario Lung Cancer Medical Institute (ALCMI) with her husband, Tony Addario, in 2008. Bonnie’s business acumen and skills honed in her first career as President of Olympian Oil Company and Commercial Fueling Network (CFN), as Past President of the CA Independent Oil Marketers Association (CIOMA) and as a community activist serving on diverse boards have all contributed to her work at ALCF in developing business strategies and being the Foundation’s patient voice at national/international conferences, on panels and boards, and to industry leaders, clinicians and policy makers.

Segment Overview: Bonnie J. Addario, Founder, Chair & Lung Cancer Survivor, talks about the hashtag #tALKpositiveNSCLC Initiative. Throughout the month of November, Takeda Pharmaceuticals will make a donation to ALCF to continue to advance lung cancer awareness and treatment when #tALKpositiveNSCLC is used on social media platforms.

TRANSCRIPT – Lung Cancer Awareness

Neal Howard: Welcome to Health Professional Radio. I’m your host Neal Howard. Glad that you could join us today. Our guest is Bonnie Addario. She’s been an activist, advocate educator and change agent empowering patients and giving them a voice in the fight against lung cancer ever since she received her stage 3 diagnosis more than a decade ago. She’s joining us today to talk about the tALK+ Initiative. Welcome to Health Professional Radio Bonnie. How are you?

Bonnie Addario: Well, thank you. I am awesome, just awesome and happy to be with you. The tALK+ Initiative is a project really, really close to my heart because I think most people out there believed that lung cancer is one cancer and it’s not. It’s many cancers. It’s many different types of cancer. All mixed into that heading and it is not one size fits all. There is not one drug that all lung cancer patients can take to be well, it’s many. The ALK fusion which is the left half of tALK+ Initiative is one of those mutations that is a driver of one type of lung cancer. And Takeda, we’re partnering with Takeda Pharmaceuticals, because they have just received recently in April of this month, I think, April 17, an accelerated approval for yet another therapy for people with this ALK fusion. The first one was ixazomib. This drug that Takeda has is one that people can take second line if they tie their progress in their cancer on the first therapy or they have become resistant to it. It’s very exciting times for lung cancer, the ALK fusion is only one of the many mutations that have a targeted drug. I think there are 11 now with targets for first line, second line and beyond and hopefully on our way to chronically managing this disease at some point in time.

N: How’ve you been doing with managing your situation and how many folks are there who are suffering from the same type of lung cancer that you’ve combated?

B: Well interestingly enough I don’t know my mutation. I was diagnosed over 13 years ago and this wasn’t even being done. There was one marker in a clinical trial at the time and one targeted drug. Now there are many and counting. We didn’t know 13 years ago that lung cancer was so many different kinds, I mean these are such positive days for lung cancer. I am convinced we are looking to many, many, many more different drivers and different therapies. I was lucky enough to be able to, I have the tumor, I had it on my heart and I was able to have some very toxic chemotherapy at the time and radiation and very fortunately was able to have surgery. That really isn’t a standard of care for lung cancer. The standard of care is becoming, getting comprehensive genomic profiling upon diagnosis to find out exactly what’s driving your cancer. Again it’s not one-size-fits-all. Everybody has a specific identifying marker, genomic marker that allows us to give you absolutely the best therapy possible for your cancer.

N: It is Lung Cancer Awareness Month and you obviously are doing your part and above to raise awareness about this specific type of cancer and some of the groundbreaking research and treatments that are available. When it comes to awareness would you say that this awareness is going to affect distribution of some of these drugs whereas many of these patients and some of the practitioners still may not be up to speed as far as the markers, the different types of cancers and the different types of treatments available?

B: Absolutely. Right now, probably only 30% of newly diagnosed patients with lung cancer are getting comprehensive genomic profiling. That needs to grow in a huge way for us to really start changing the survival rate from lung cancer. The survival rate is still only 18% when I was diagnosed thirteen years ago was 15.25%. It’s not growing fast enough and especially in the community, we need physicians to immediately upon diagnosis make sure the patient has the genomic profiling. So we can identify the targets and hit it hard.

N: In your own situation, talk a bit about the psychological aspect of realizing that there are these treatments out there after having maybe been told the traditional treatments were the only ones out there. I’m sure that spirits are lifted when you’re raising awareness and talking to some of these people who never had a clue but now they’re on a different path toward recovery.

B: Well you’re exactly right. In 1971 Richard Nixon declared war on cancer, but the war on lung cancer is just now getting started. It’s a beautiful thing. It used to be if you were diagnosed with lung cancer you kind of fell into a dark hole and there were only one or two potential therapies out there and when they stopped working it was over for you. Now, the future is so much brighter and Takeda is one of the leaders in making that happen. This whole month for November and lung cancer awareness, we have been talking about nothing but these new initiatives and how important they are. We need to know. Imagine a bus going down the road and one driver gets off and another driver gets on, makes sense.

N: Talk about the social media aspect of the tALK+ Initiative, how are we going to get listeners involved via social media?

B: It’s actually awesome and patients are becoming so much more educated now with social media. They, at times, know more about their cancer before they even have a discussion with their physician. Patients can follow Takeda on Facebook, Twitter and Instagram. They can also get into living with alk.com/alk+ to learn all the facts about their particular ALK driven disease and actually take that information back to their physician and say, “Hey, what about this for me. It looks to me like I qualify for this therapy.”.

N: The donation goes to the the Bonnie J Addario Lung Cancer Foundation. Is that correct?

B: That’s correct. Every time a patient gets involved in any one of those venues,Takeda makes a donation to our foundation which we use for patient programs and research as well.

N: Where can we get some more information about Takeda?

B: Takeda would be living with alk.com or you can go to Takeda oncology.

N: It’s been a pleasure Bonnie, thank you so much for taking the time today.

B: You’re welcome thank you. Thank you for spreading the word.

N: You’ve been listening to Health Professional Radio. I’m your host Neal Howard. Transcripts and audio of the program are available at healthprofessionalradio.com.au and also at hpr.fm. You can subscribe to this podcast on iTunes, listen in and download a SoundCloud and be sure to visit our affiliates page at healthprofessionalradio.com.au and hpr.fm.

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