Tag Archives: lung cancer advocacy

 

 

The heart of advocacy: AACR Scientist↔Survivor Program

An advocate is someone who takes a public position on a cause or policy. My initial steps into lung cancer advocacy were as a spokesperson–I shared my story with the goal of spreading awareness (even a young, never smoker such as myself could get lung cancer) but also hope–although given a dire prognosis I was alive, thanks to an experimental therapy.

However, I was soon itching to do more and became a peer reviewer for the CDMRP—Congressionally Directed Medical Research Programs. My background as an artist did little to prepare me for the rigor of scientific proposals, but I found that I really enjoyed the intellectual challenge.

I owed a lot to medical research and as a participant in three phase I clinical trials, I had some hands-on experience (fieldwork, if you will). It became clear that medical research was the aspect of advocacy that I was most interested in focusing on. When I heard about the AACR Scientist↔Survivor Program I knew it was the perfect fit for me.

The program coincides with the Annual Meeting for the American Association for Cancer Research and this year it was held in New Orleans. As anticipated, I refined my understanding of the basic biology of cancer (particularly a wonderful Mini Med School presented by Dr. Carolyn Compton on our first day) and also had the opportunity to sit in on not only plenary sessions but smaller presentations around topics including precision medicine and genomics. We attended a policy overview and a special session with the FDA, led by Dr. Richard Pazdur, who lost his wife to ovarian cancer (and also learned a lot about the drug regulatory process from a different perspective, that of the patient). Dr. Pazdur said something during this session that I found very impactful: ‘Patients aren’t for clinical trials. Clinical trials are for patients.’

Being at Dr. Jean Cui’s (she developed crizotinib) poster session and having her greet me as if she were expecting me for tea was pretty darn special. And I even had an out of body experience when I saw my lungs on the big screen during one of the plenaries (the presenter was Dr. Jeffrey Engleman and the topic was resistance to therapy, for which I am a poster child).

C'est moi.

C’est moi.

The single most significant thing I learned from my experience can be found in this statement from the AACR SSP online site:

The AACR Scientist↔Survivor Program is designed to build enduring partnerships among the leaders of the scientific, cancer survivor, and patient advocacy communities worldwide.

The word partnership. Far too often Patient as Partner–a term bandied about in medical circles now–is mere rhetoric. Western medicine is still in the process of transitioning from a very paternalistic practice to one in which the patient is in fact viewed as a partner in his or her own care. The AACR SSP program is trying to push that needle forward by empowering patients/advocates with true knowledge and understanding. It is an incredibly respectful viewpoint, and I am so grateful to Dr. Anna Barker for creating and sustaining this unique program. I encourage anyone who is interested in sharpening their advocacy skills to apply.

As for me? I came away committed to not just medical research, but the patient voice, and particularly that of patients with advanced, or metastatic disease. I’ve already had several opportunities to champion that cause, including a seat on a panel (Stakeholder Panel Discussion: What are the challenges and opportunities for research and delivery of care across the cancer journey?) at the American Cancer Society’s New England Cancer Center Leadership Roundtable this past Monday. At the conclusion of the meeting participants were queried as to the greatest takeaway from the day. And the unanimous response? The patient voice.

This is Hope

It’s been more than two weeks now but I’m still high on Lungevity’s National HOPE Summit. Some clever person in attendance coined the hashtag #thisishope which absolutely sums up what I have come to view as one big family reunion. This year we numbered about 300 survivors and caretakers. All with a common goal; doing something about lung cancer.

Dolio, Linnea, Bruno and Diane.

Dolio, Linnea, Bruno and Diane.

Leslie and Andy Trahan (<3 these two)

Leslie and Andy Trahan (

Striking this year were the number of young people in attendance—and of course the older I get, the greater the number of survivors who I look at and think, ‘you could be my child’. Absolutely unacceptable and something that really gets my panties in a twist. However, what these young survivors and their caretakers bring to advocacy is immeasurable passion, energy and optimism. I am also always incredibly moved by those advocates who have lost either a family member (sadly, sometimes a child) or a close friend to lung cancer but continue to fight for not only their lost loved one but all of us with this disease. Thank you.

It is never a good time to have lung cancer but with FDA approval of eleven different drugs for lung cancer since 2006, it is at least a time of increasing therapeutic options. And look at that picture of all the people who have lived for ten years past diagnosis (Diane and myself included)—again, hugely encouraging.

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Survivors ten years and more out from diagnosis

And that first photo? Dolio, Bruno, Diane and I are all lung cancer patients/advocates (although you wouldn’t guess the patient part looking at the picture, and that is why I love it so). The four of us went out to dinner the final evening of HOPE summit. Our reservation had been mistakenly made for the following night and the only available table was outside and it was pretty darn chilly. Diane played the C card and upon hearing that we were all living with lung cancer, the manager was overcome. His mom had just been diagnosed with advanced breast cancer, and our smiling faces made him feel infinitely more hopeful. He ushered us over to perhaps the best seat in the house and then brought us this ridiculous (but oh so fun) tropical drink. It was a lovely and somewhat surreal ending to a fabulous weekend of learning/bonding. Thank you Lungevity and see you next year!

Spotlight on an advocate: Day 13

*In November (the month dedicated to lung cancer awareness), bloggers are highlighting a different advocate everyday. My first post is about Diane Legg and it is on Day 13.

It was March of 2006. Dana Reeves had just died and I was reeling. As a young woman with lung cancer, I’d hitched my star to Dana’s, and her loss felt terribly personal. But then I happened to pick up a copy of the Newburyport Daily News. Inside was a story about a young mother of three with lung cancer; Diane Legg. I found her phone number online and called her that afternoon. We chatted a couple more times but our plans to have coffee somehow never materialized.

Diane Legg and Hildy Grossman: two super advocates!

Diane Legg and Hildy Grossman: two super advocates!

In 2008 my path and Diane’s crossed once again. I was attending Lung Cancer Alliance’s annual Shine a Light on Lung Cancer at the Prudential Center in Boston because my trial buddy Kevin Brumett was speaking—Kevin and I were early participants in the first clinical trial for an ALK inhibitor. Well, as a co-chairperson, Diane was there too and we finally got to meet. And the rest, as they say, is history.

I treasure Diane as a close friend but also as an inspiration; the first person I saw a little further down this path than myself.

Diane was only 42 when she was diagnosed with NSCLC. She’d strained a muscle while picking up her one year old and when the pain didn’t go away, she was scanned to rule out a pulmonary embolism. What they found instead was lung cancer.

The fact that Diane has lung cancer is not the reason she became a passionate advocate. Instead it was the death of a close family friend who had been diagnosed at the age of 43 just a few months prior to Diane. Devastated by how quickly her friend passed, Diane was galvanized into action: “I turned her loss into advocacy.”

Her first act of advocacy was to become co-chair of the Massachusetts chapter of the Lung Cancer Alliance. All those Shine A Light on Lung Cancer events? That was Diane’s brainchild. She also teamed with her husband Dave to form TeamLUNGStrong, part of the annual Pan-Mass Challenge. Monies that they raise are earmarked for lung cancer research at Dana Farber and Massachusetts General Hospital. Despite the fact that her cancer is now advanced Diane herself rides in the PMC (amazing, truly amazing).

I asked this mother of three and super advocate what motivates her. She responded very matter of factly that ‘you don’t have a choice, you just go on–everyday is a gift.’ And then I wondered what she would want if she could have anything in the world. Her answer? ‘Not to worry.’

Fitting somehow that this post is going up on Friday the 13th. Diane and I both had some really bad luck; non-smokers diagnosed with lung cancer at a young age. However, we also know when to count our blessings. More than a decade after diagnosis we’re still here. Through this journey we have had experiences and forged relationships that have helped make the unbearable bearable. Diane, I am grateful for all you do on behalf of everyone with lung cancer. And I am oh so proud to be your friend. ❤

#lcsm  #LCAM