It is hard to believe, hope, and endure when it comes to lung cancer.
It’s a constant one step forward, two steps back; an uphill battle. I think back to when LUNGevity first started; I am proud of how much we have accomplished in the past 13 years, but then something happens or someone dies, and I am reminded of how far we still have to go to fight this disease. My dad died 31 years ago; the five-year survival rate was 14.5%. My mom died 16 years ago; the five-year survival rate was 15%. My friend and LUNGevity co-founder, Missy, died seven years ago; the five-year survival rate was 15.5%. Today, the five year survival rate is 17%. I am thankful to be part of that 17%, but it doesn’t change my long term prognosis. How can we not be further along in the fight against this insidious disease?
We know that the perpetuated stigma that lung cancer is self-inflicted is largely to blame for the lack of empathy, support and funds raised for research. From the government and physicians down to the individual, there are social biases. Every other cancer diagnosis elicits empathy with responses such as, “I am so sorry,” or “What can I do to help?” The response to a lung cancer diagnosis is usually, “I didn’t know you smoked,” or “How long did you smoke?” Would you ask someone with melanoma if they worshipped the sun, someone who had a heart attack if they ate a lot of McDonalds, or someone with cirrhosis of the liver if they were an alcoholic? The physical and emotional pain and stress are enough for any cancer patient to endure, but then imagine feeling blamed, shunned and shamed.
The shame and blame have to stop now; it’s toxic and we (patients) are dying because it creates a serious barrier to diagnosis, treatment and acceptance in the community. Anyone with lungs can get lung cancer, ANYONE! The face of lung cancer is diverse; it’s your mom, your dad, sister or brother, your friend or your child. In fact the face of lung cancer could even be YOU. Lung cancer doesn’t discriminate, and neither should society. The World Health Organization recently declared outdoor air pollution as a leading cause of lung cancer. This finding hasn’t received much media attention, despite the significance; we breathe = we are at risk for lung cancer. It is a deadly problem!
My involvement with LUNGevity has been rewarding, exhausting, frustrating, exciting, etc. I have witnessed and celebrated the creation of a lung cancer community, watched the funds we raised help advance research and increase support for lung cancer patients, but it’s not enough. We need to make lung cancer a national priority. We need to create change. It would help if we had a champion. We need a champion – many champions.
It is maddening to me that there are ‘celebrities’ affected by lung cancer who have respected and influential voices – who can reach large audiences and really make a difference – but aren’t stepping up to the plate and speaking out for lung cancer! In fact many won’t even acknowledge their lung cancer diagnosis or death, and it’s disheartening. A few examples are: The Jimmy V Foundation website doesn’t mention that Jim Valvano died of lung cancer (and that is not where the millions they’ve raised have been donated). You have to dig deep to find that Paul Newman died of lung cancer. Bryant Gumbel told his viewers that he had “cancer removed from his chest.” These are the very people that could easily provoke change and become our champions, yet are actually perpetuating the stigma and making things worse by avoiding any affiliation with the disease!
Media are a vital conduit for health information, and lung cancer is a major health issue, it is an epidemic. Lung cancer is the number one cancer killer in the country, yet there hasn’t been a ‘health alert’ to educate the public. Why? Lung cancer is not a story that journalists and editors think their audience would be interested in; it isn’t seen as ‘media friendly’ or newsworthy. Here’s an alert: “Lung cancer isn’t going away!” What will it take? How many of us have to die, or who has to die, for someone to take a stand against lung cancer?
It’s up to us, the lung cancer community, it’s our challenge. We need to rethink lung cancer and create change. I know firsthand that we have made great strides, but too many of us (patients) are still suffering and dying; the survival rate has only increased a few percent in the past 30 years. Lung cancer isn’t going away, but patients are living a little longer and we are able and willing to storm the Hill, educate the public, raise awareness, tell our story and create change. But, we need help. We need more advocates — more voices, from all stakeholders. And then all together, we can be the champions we so badly need.
Many advocacy groups have started since LUNGevity was founded 13 years ago, and each one is doing incredible work to educate, support, raise awareness and raise funds for lung cancer research. Now it’s time to create a common platform, a common agenda and become one voice; a louder voice with a bigger presence. As past president of LUNGevity, I understand it’s not that easy, but now as a patient I also understand the sense of urgency, the distress and the fear that things aren’t moving fast enough. We need more than a collaborative group that provides resources. We have to find a way to create a catalytic collaboration and together create a movement that will result in true systemic change — change that will prolong and better our lives.
We share a vision, a core belief and we share similar stories; our desired result is the same. But, the scope of what we need to accomplish is much greater than fighting for tiny pieces of the diminishing pie. The lung cancer community needs to come together and build one community; an organized and educated community that demands empathy, respect and funding for research!
I look at Breathe Deep North Shore, one of LUNGevity’s grassroots events, which will be held on April 27th at Deerfield High School (you can still register or donate to my team http://events.lungevity.org/goto/jillsteam or another team) will be over 1,500 people coming together; patients and their loved ones, businesses, physicians, political leaders — all to support and create change. This effort is rooted in one little town of 18,000 people. Imagine what we could do, what noise we could make, if we all came together across the nation, even if it’s just for a day.
Individually we can make a difference, but together we can do more, be more, impact more and create change! If we Believe and Endure, Hope will transcend all impossibilities.