Do you ever start to write something and when you finish the piece … it has wandered to places you never imagined? That seems to happen to me all of the time.
I started a post this morning that was talking about the dearth of funding for lung cancer. I quoted the dire statistics associated with a lung cancer diagnosis.
While doing some research for the article, I listened to some videos that discussed the progress being made in lung cancer research. And, then I found an article by Dr. Gilliland, President and Director of the esteemed Fred Hutchinson Cancer Research Center in Seattle, WA. Suddenly, I was filled with optimism!
My article ended completely different than it started. It started out somewhat hopeless and ended with the following quote from Dr. Gilliland,
I’ve gone on record to say that by 2025, cancer researchers will have developed curative therapeutic approaches for most if not all cancers.
So, now I am sitting amazed at the remarkable progress that our scientists and researchers are making toward finding a way to make even the direst diagnosis more palatable.
Can you even imagine a world … in just 7 short years … where a cancer diagnosis doesn’t equate to a death sentence?
Mind boggling! And so encouraging!!
I write to Congress fairly often in hopes of convincing them to throw more support toward lung cancer research. But, I wonder if my time wouldn’t be better spent writing to the National Institutes of Health (NIH) and/or the Centers for Disease Control and Prevention (CDC)?
Here’s why I ask. I received a response to one of my letters from my senator, John Cornyn, that actually included some potentially valuable information. He wrote,
As you know, entities such as the National Institutes of Health and the Centers for Disease Control and Prevention are charged with allocating federal research dollars toward research and initiatives that will advance prevention and successfully treat diseases and health conditions. I believe Congress plays an important role in overseeing the distribution of these monies and must ensure they are wisely spent.¹(emphasis mine)
Should we not then be concentrating some of our efforts to advocating the CDC and the NIH to allocate more of the research dollars they receive to lung cancer? I mean, I know we need to talk to Congress about budgeting the dollars for NIH or CDC, but once there, I am not sure their researchers feel a real need to fund lung cancer.
I base my theory, in part, on a statement made by the NIH to Cure Magazine in August 2017. I was angry and incredulous when I read:
According to the National Institutes of Health, lung cancer received about $250 million in recent years in research funding annually, and it claimed 25 percent of all cancer deaths. That means that about $1,700 is spent for every person who dies each year from lung cancer. That spending rate is much higher for other forms of cancer.
Leukemia receives about $240 million a year and accounts for about 4 percent of cancer deaths. That means almost $10,000 is spent for every person who dies of leukemia. For breast cancer, that number is about $13,000.
The NIH states that funding is provided to research based on its scientific merits, not the type of cancer it targets. (emphasis mine)²
Lung cancer kills more people than the next three biggest cancer killers combined: prostate, breast, and colon. The NIH surely sees breast cancer as a worthy cause to fund. Are the researchers seeking funds that target breast cancer that much better grant writers or trial designers than those seeking money for lung cancer research? I sincerely doubt it.
If you wish to make your voice heard by the NIH, contact information for the Director is:
Francis S. Collins, MD, PhD
BG 1 RM 118A
1 Center Dr
Bethesda, MD 20814
You can contact the CDC at:
Anne Schuchat, MD, Acting Director
Centers for Disease Control and Prevention
1600 Clifton Road
Atlanta, GA 30329-4027
The National Cancer Institute’s contact information is:
Mr. Cornyn further advised me that he does not sit on the Senate Appropriations Committee so has little jurisdiction over how the annual appropriations bill will be allocated.
So, I guess my next question is to you. Does your senator sit on the Appropriations Committee? Please click on the link and send your Senator a letter if he or she is on the committee.
¹Letter from John Cornyn to Donna Fernandez (email@example.com), dated 02/09/2018
²T Keenan. “The American Lung Association Seeks to End Stigma.” Cure Magazine. August 11, 2017. https://www.curetoday.com/articles/the-american-lung-association-seeks-to-end-stigma. Accessed 3/4/2018
On one of my favorite non-lung-cancer-related forums, a LungCancer.net blog was referenced, Lung Cancer Stigma – What Can We Do About It? where Lora Rhodes, the author of the blog post, begins by defining what a stigma is. She writes that it is “a feeling imparted by others that one’s disease was self-inflicted…” and “Lung cancer stigma can result in feelings of fear, guilt, and blame.”
Lora discusses an interesting movement called the Lung Cancer Project whose goal is “to identify, understand, and remove stigma and other barriers faced by people with lung cancer.” If you have never checked out the Lung Cancer Project, take a look at it. One of the project’s studies surveyed more than 3,000 people to understand the social psychology of lung cancer relative to breast cancer. The study confirmed what those of us with lung cancer already know: people have a significantly negative bias and associate blame and hopelessness with lung cancer compared to breast cancer.
Lora’s blog post goes on to dispute common myths associated with lung cancer. For instance, many people diagnosed with lung cancer have never smoked or quit long ago. Furthermore, the majority of those who do smoke wish they could quit, but nicotine is as addictive as heroin, cocaine, or alcohol.
But, the point of this post is not to reiterate all that Lora said. You can (and should) read her post. And, take the Lung Cancer Project’s Implicit Association Test (IAT) if you want to see what your own biases are. But, the point of this post is the responses that came from the cancer community to a post about lung cancer stigma.
The first thing I noticed about the replies to the blog post were people with other cancers adamantly stating that their cancer also had a stigma. One explained that esophageal cancer could be associated with the abuse of alcohol and another said that colon cancer was sometimes blamed on a poor diet or lack of exercise. These statements may be true, but I have never heard anyone ask someone with colon cancer, “Oh, did you eat an unhealthy diet and cause your own cancer? Well, then, suffer. You should have known better.”
It was so odd. It was like they wanted their cancer to be stigmatized. Why????
Lung cancer stigma is so strong that it kills people. Indeed, over 160,000 people are expected to lose their lives to lung cancer this year or #433ADay as many in the lung cancer community are tagging awareness posts these days.
How is the stigma responsible for those deaths? Well, it probably can’t be blamed on all of them, but it sure can be blamed on many of them. How’s that? The lack of funds allocated to lung cancer research as compared to other cancers. We can’t find cures or early detection methods or much of anything else without funding. And, lung cancer is definitely the cancer stepchild when it comes to getting any money.
What really saddened me … but also made me mad … were some of the comments left by people who read the post, people who themselves have cancer. For me, they proved how deep (and scary) the stigma really is:
My mother died of lung cancer and was a two pack a day smoker. My siblings and I and all her grandchildren begged her to stop. She did finally stop at age 70 and was diagnosed at 73. Her first words after diagnosis was XXX why did I give up cigarettes. I don’t know if her children or grandchildren will ever forgive her for slow suicide. (emphasis mine)
When I was a teenager my dad, who had smoked for a long as I could remember and had diabetes, would get up every morning and cough so hard that it sounded like he’d cough a lung up. I went to him and asked him to quit. He just laughed. I told him it would be easier on us 4 kids if he’d just shoot himself. (emphasis mine)
No one … no one … deserves cancer. No one deserves lung cancer. And no one deserves to be ostracized because of their cancer.
Read what Dr. Jyoti Patel wrote, back in 2014:
For years I have cared for patients with lung cancer who suffered from the stigma surrounding the disease. I have watched patients courageously fight, endure treatment toxicity, and come to terms with the fact that their disease would ultimately be fatal all on their own, primarily because of the shame that they felt. They, and many others, felt the disease was somehow self-inflicted. They felt guilty for putting their loved ones through such a difficult journey, one they felt they had brought upon themselves. It’s hard for me to believe that anyone could feel that such a deadly disease was somehow deserved.
Family members, friends, acquaintances, and yes, even the patients themselves who were or are smokers, feel that they got what they deserved. How in the world do we change this stigma? It isn’t getting any better over time. No matter how much we talk about it, the stigma runs deep.