If It's Not Pink, Will Anyone Notice?

Every year in New England when the calendar turns to September we feel the change in the weather start to feel like fall. I start to think about the rest of year and what I can do to make a difference. November is Lung Cancer Awareness Month (LCAM) and it's just around the corner. And it comes on the heals of the annual pink washing that will take place in October for Breast Cancer Awareness. I always thought I did my part as a lung cancer survivor and advocate to "raise awareness" during November. But have I made a difference? On self reflection I don't think that I have done as much as I could, so I am going to change that. 

Me with former Congressman Rick Nolan, a champion for lung cancer research

In past years I have shared my lung cancer story and attended rallies with other advocates to bring attention to lung cancer research and express what it means to me. I've always been happy to do so. But this year I am in a different mindset and want to do more. Can one person really make a difference? I've embraced my role as a research evangelist. So what would an evangelist do during November? Shout from the highest mountaintop that we need to do a better job of funding lung cancer research, the number one cancer killer. It's not just a "smokers disease." It's estimated that 20% of the 154,000 people who die of lung cancer each year never smoked. That means nearly 30,000 people! Anyone with lungs can get lung cancer. So enough with the stigma of a smokers disease and smoking prevention campaigns. Let's take this as seriously as other cancer diagnoses like breast cancer or prostate cancer. And advocate as strongly as the breast cancer community has done so well. And how about we shine a light on lung cancer researchers that are on the front lines of exploring new ideas, a new frontier of research, supporting thought-provoking ideas, and introduce the world to free thinkers that can transform how we think of lung cancer. And...wait for it...what if we changed the way lung cancer research is funded...turned it on it's head, total disruption of the system? 

Did you know that most researchers spend roughly 75% of their time writing grants and fundraising to support their labs? They run their research labs as a small business...they are not funded by the institution they work for, they are responsible for raising money to support their work. Let that sink in...you are a researcher at an academic center like Mayo Clinic, Dana Farber, Johns Hopkins - name one - and you have to find your own funding to support your work. And the average age at which a researcher gets the first NIH grant is 43 years old. And forget about getting support as a young researcher. Where are you going to turn for money? This system is in need of disruption. Add on to that the fact that lung cancer is considered a "smokers' disease" so it gets even less attention because the image is that the people with lung cancer deserved it. But if one of your loved ones was one of the 30,000 nonsmokers who died from lung cancer, wouldn't you be upset to know that many cancer centers don't give high priority to lung cancer research - even though more people die from lung cancer than any other cancer? And even if your loved one smoked, does that make them less important?

Here's my thing. I am tired of the fact that big institutions get multi-million dollar gifts each year and yet that money generally doesn't filter down to individual research labs. A wealthy donor can give $20 million to the institution, but researchers don't see any of that money. The development (fundraising) offices at many of the large academic centers I know don't do a good job of fundraising for the research labs because it's not their priority. And researchers are told they can't approach wealthy donors directly for support of their labs because that is off limits (the institutions' senior leadership control the relationships with big donors). My point is not to disparage the institutions because as nonprofits they have a genuine need to raise money. I'm just trying to expose the fact that most people probably don't know how hard it is for an individual research lab - even at a high profile institution - to fund their work. It's the system that needs to be disrupted - blown up and exposed. We can do a better job of fundraising for these labs by connecting their work with people who care - high net worth individuals, family offices, venture capital firms and people with a direct connection, in this case, to lung cancer.

If you have a loved one who is undergoing treatment, or who passed away from lung cancer, and you want to make a difference by "supporting the cause" then I argue you should donate directly to research labs. I want to help introduce the public to these people so you know who to support and know exactly what they are working on. The current model has you either donate to a nonprofit lung cancer foundation that will choose projects to support based on their defined priorities, or national organizations like the American Cancer Society which is hard to discern where your money goes. But in reality, either way only a fraction of your money goes to research and you have no control as a donor where the money goes.. What if you could invest/donate directly to researchers - with 100% of your donation going to fund research? Isn't that what you would like your money to support in honor of your loved one? And wouldn't it be amazing if you could meet that researcher and get to know them as human beings and feel connected to their work, their mission, their vision and know they are committed to the exact area of research that you care about based on the diagnosis of you or your loved one? 

This is my challenge for LCAM 2020. Change the paradigm of how research is funded. Showcase institutions that prove that they care about lung cancer research and spotlight research projects that their individual researchers are working on that people can support. Meet the people behind the scenes that you would never meet - learn about their work and be able to support them. Help us find the people with significant resources to invest in these researchers and their work - wealthy families, investors, professional athletes, celebrities who are affected by lung cancer. If not now then when? If not us, then who? Let's change the way we view lung cancer - it's not just a smoker's disease. It's not about pink but why can't we make it as important as October is for breast cancer. If you have a connection to lung cancer, you can join me. I'm the research evangelist and I want you to feel empowered to make a difference. We are all in this together.

#gratitude #trust