From Survivor to Advocate: How 1 Patient Launched 2 Foundations

by Ben Leach
Originally published Online at OncLive.com on Friday, October 5, 2012.

Bonnie Addario

Nine years ago, Bonnie J. Addario was a successful fifty-something California businesswoman whose active lifestyle was being disrupted by persistent chest pain. Her doctors thought the pain stemmed from a bulging neck disc and, after months of fruitless exercising and frustration, she decided to pay for her own full-body computed tomography (CT) scan.

As it turned out, she had stage IIIB lung cancer.

Addario emerged from the trauma of her cancer journey with a desire to improve the experience for others. “It shouldn’t be that hard to get a good diagnosis and get good care,” Addario said during an interview at the 13th International Lung Cancer Congress. “There needs to be a change. And I am determined and committed to being a critical part of making that happen.”

Today, Addario’s name is synonymous with ground-breaking research and meaningful support for patients. In 2006, she established the Bonnie J. Addario Lung Cancer Foundation, which has raised more than $9 million. In 2008, the Addario Lung Cancer Medical Institute was established as a nonprofit research consortium among top institutions spanning North America and Europe.

Addario’s foundation also sponsors a lectureship award, which “recognizes luminaries in the quest to eradicate lung cancer” and supports a keynote presentation at the International Lung Cancer Congress. In July, D. Ross Camidge, MD, PhD, director of the Thoracic Oncology Clinical Program at the University of Colorado Denver, received the fifth annual award.

As Addario has gone from patient to survivor, she has learned much about what patients are looking for in terms of information and care. Through her organizations, she is determined to play a part in helping patients with lung cancer achieve better outcomes.

“There really is no consensus on standard of care for lung cancer like there is for breast cancer, for instance,” Addario said. “And because there’s such a good standard of care for breast cancer and early detection, the five-year survival rate for early-stage disease is about 90%. That’s where we need to be for lung cancer.”

Conducting Her Own Search for Care

Addario found that even after she was correctly diagnosed, she had to search for answers on how best to be treated. At first, she was told the tumor was in such a difficult position that a biopsy could not be performed. “It was too close to my heart for them to get in close enough to get any tissue,” she recalled. “So then they told me that the only option really was surgery to see what was in there, and that just didn’t sound good to me. You’re going to cut into my chest and explore?”

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By chance, Addario read a newspaper story about a partnership between Melissa S. Lim, MD, medical director and founder of Redwood Pulmonary Medical Association and a doctor at Sequoia Hospital, and David M. Jablons, MD, a professor in the Department of Surgery at the Helen Diller Family Comprehensive Cancer Center, University of California, San Francisco. The partnership allowed the pair to see difficultto- treat patients.

“They recommended a chemotherapy/radiation combination to reduce the tumor as much as they could. And then if that was successful, they would consider surgery,” Addario said. “We got to that point. I had all of the therapy, and David said that it’s still very difficult and it’s a challenge, but if you’re up to it, I am. He said, ‘Because if you don’t have it, you for sure won’t live.’ So we did it. We had the surgery, and I’m a grateful patient.”

After she was diagnosed with lung cancer, Addario found out that her own family has a history of lung cancer; her mother, in fact, was diagnosed with the disease after she was. As a result, her foundations aim to advance both emerging research and patient support.

Connecting Patients With Information

The Addario Lung Cancer Medical Institute focuses on collecting and analyzing tissue, blood, and plasma samples from patients treated through community hospitals. “Patients are not getting molecular testing at the rate they should be,” Addario said. “Many deserve a targeted drug, and they’re not being given a targeted drug because they’re not being given the testing. So our goal there is standard of care.”

The Bonnie J. Addario Lung Cancer Foundation concentrates on fundraising and public awareness campaigns. The first campaign was designed to raise awareness about getting CT scans to diagnose lung cancer. It has since grown into a resource network for patients and their families, with a particular emphasis on using the Internet to connect to resources.

In June, the foundation launched its Lung Cancer Living Room, which consists of live stream broadcasts of an interview with an expert every third Tuesday of the month; patients and their families can type their questions and get answers from the doctor immediately.

Addario estimates that about 1700 people tuned in to one broadcast.

“There’s a breast cancer support group on every corner. Finding a lung cancer support group is not as easy. More often than not, when a patient is in treatment, it’s very difficult for them to travel any distance of any kind, and come at night because most people are still working, too,” Addario said. “Now we’re able to bring it home to them in their living room, where they can relax and have a cup of tea.”

Addario believes that one of the biggest hurdles to better lung cancer care is the stigma surrounding the disease because of its association with smoking. She said that the negative perceptions contribute to a lack of resources being channeled into studying causation and prevention.

“I never ask anybody if they smoked or not,” she said. “The worst possible thing that can happen to you is that in one moment you hear you have cancer—I don’t care what kind it is—and, oh, by the way, you should be ashamed, too, because you brought it on yourself.

“We need to work on smoking because I personally think it’s not a good thing for anyone to smoke, but we shouldn’t take it out on people who have cancer,” Addario said. “We need to take just as good care of these people as we do any other patient with any other disease.”

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