Listening in on what a Member of Congress Says about Cancer
Have you heard of the American Association for Cancer Research (AACR)? Every September, they present a Cancer Progress Report to Congress. I just spent some time on their Web site, listening to some of the 2018 survivors' stories. This year, The Honorable Mark DeSaulnier, D-California was among those featured.
Taxpayer dollars funding research
Maybe it is because of my background in accounting, but I was struck by the way Representative DeSaulnier spoke about the "return on investment" that Americans get when taxpayer dollars are spent on National Institutes of Health (NIH) programs. He said that the return on investment comes by extending lives, improving quality of lives, and affecting the lives of not only the patient but also everyone who loves or works for the person with cancer.
The American taxpayer invests more than $30 billion in the NIH every year.1 Of course, not all of those funds go to cancer research and definitely only a very small portion goes to lung cancer research. But, that's a soapbox I'll get on another day! Today, I am grateful for the funds that we do get. As DeSaulnier rightly stated, the best and the brightest go into research to help people. Every dollar we can provide them to advance their work, the better.
How can we make policymakers care about lung cancer?
Mr. DeSaulnier said something else during his taped interview that made an impression on me. He said, "So much of your work as a policymaker is informed by your own personal life." This has been made painfully obvious to me when I have met with my own Representative. He has told me on multiple occasions that he has a son with Down's syndrome and one with an eye disease and that those are the diseases he most wants to see funded. It always frustrates me to hear those words and his apparent lack of concern for my plight.
Right or wrong, sometimes it makes me wish one or more of our esteemed leaders could hear those terrifying words, "You have late-stage lung cancer." I don't truly wish the disease on another living soul, but sometimes it seems like that's the only way our disease is ever going to get the attention it deserves.
The broader cancer stigma
We often hear about the stigma that a lung cancer diagnosis brings with it. Those of us living with the disease have felt it often. I blame the stigma for the lack of funding our disease gets. But, Representative DeSaulnier shocked me with the following statement,
A cancer diagnosis still carries a stigma. Despite disease being part of the human experience for thousands of years, we continue to stigmatize diseases like cancer. In doing so, we degrade our own humanity and put in place unnecessary obstacles that limit progress. Instead, we should support efforts and investments that increase and extend the quality of life. In many ways, the biggest obstacle we face in eradicating cancer is as much emotional as it is physical.2
Maybe I am myopic, but I was surprised that he thinks all cancer diagnoses carry a stigma. We know that lung cancer does, but I don't think of brain cancer, breast cancer, or leukemia having a stigma. I think cancer - any cancer - causes great fear, but I don't know that I agree that all cancer is vilified.
Do you find that interesting? Do you agree that all cancers are stigmatized?
Do you find that staying zen through your lung cancer diagnosis has helped you in your journey?