Why the Inequities?

You know, I try to stay really upbeat most of the time. I am fairly successful at it. Like Dann Wonser says, most trials and tribulations we lung cancer survivors face are very tiny, while cancer is VERY BIG. (http://www.dannwonser.com/blog/a-little-disaster-can-be-a-good-thing/5/4/2015 ... you really HAVE to read this, it is hilarious!). I think many cancer patients agree that we no longer sweat the small stuff ... and most everything we face in our lives besides cancer is small stuff.

But, I came across the following article today: http://www.ksat.com/content/pns/ksat/news/2015/05/08/questions-raised-over-funding-for-cancer-research.html. It distressed me a lot. As did most of the reaction I received after I posted on Facebook about it.

The article was written by Myra Arthur, an anchor/reporter for ABC affiliate KSAT-12, a San Antonio, TX affiliate. Ms Arthur questions, as do I, why funding for lung cancer research trails so far behind that of other cancers, especially breast and prostate. Her advocacy makes me wonder if somehow her life, too, hasn't been touched by lung cancer. Most people ignore it otherwise. That's just the sad fact.

Facts - Ho Hum ... But Necessary!

Here are some facts about cancer - some good, some not so good:

1. The two largest federal agencies that fund cancer research are the National Cancer Institute and the Department of Defense. These two agencies funded breast cancer research at $802 million in 2014. Prostate cancer research received $334 million.

2. Breast cancer is expected to be found in 234,190 men and women in 2015. (That's right! Men can get breast cancer, too!) During 2015, 40,730 people are expected to die from breast cancer. That's too many, for sure, but basically, if you get breast cancer, you have very good odds of surviving at least five years. These odds have increased exponentially over the past few years as more and more attention has been given to the disease.

A whopping 29% of all cancers diagnosed will be breast cancer. About 15% of all cancer deaths result from breast cancer.

3. Prostate cancer is the most common cancer among men. It nearly seems like every man is going to be diagnosed with it if they live to be old enough. I have gotten so cavalier about it ... "oh! prostate cancer. minor inconvenience. treat it. be done." I wasn't quite so sure of myself when one of our very best friends died from it only months after diagnosis. (I think he waited REALLY long before seeking treatment and it had metastasized throughout his body.)

So, the facts for prostate cancer are: 220,800 men are expected to be diagnosed with prostate cancer during 2015. Prostate cancer will account for 9% of all cancer-related deaths this year.

4. And then there's lung cancer. Research funding from the two major federal agencies for this disease during 2014 was a whopping $265.6 million. Let's remember. Breast cancer got $802 million and prostate got $334 million. Hello????

During 2015, it is estimated that 115,610 men and 105,590 women (total of 221,200) will be diagnosed with lung cancer. Most of these diagnoses will be late stage because lung cancer typically doesn't make itself known until it has metastasized. It is somewhat treatable if found in early stages, but in late stages, the prognosis is downright bad.

Lung cancer is expected to claim the lives of 86,380 men (that's 28% of all cancer deaths) and 71,660 women (26% of all cancer deaths) for a total of 158,040 people succumbing to lung cancer in 2015. An awful lot of families are losing their children, their moms and dads, and/or their grandparents to this insidious disease.

So, the likelihood that you'll get breast cancer if you are a woman or prostate cancer if you are a man is somewhat greater than that you'll get lung cancer. Pray that you get one of these cancers and not lung cancer. Because, if you get breast cancer, you have an 89% chance of surviving at least five years. Prostate cancer has even better odds. Over 99% of prostate cancer survivors will still be living life in five years.

But, if you are one of the unlucky ones who gets the lung cancer diagnosis, you have much worse odds. Let's just take a quote right out of Cancer Facts and Figures 2015, a publication of the American Cancer Society:

 The 1- and 5-year relative survival rates for lung cancer are 44% and 17%, respectively. Only 15% of lung cancers are diagnosed at a localized stage, for which the 5-year survival rate is 54%. More than half (57%) are diagnosed at a distant stage, for which the 1- and 5-year survival is 26% and 4%, respectively. The 5-year survival for small cell lung cancer (6%) is lower than that for non-small cell (21%). 

(http://www.cancer.org/acs/groups/content/@editorial/documents/document/acspc-044552.pdf)

Wow.

Outrage

So, does this make any sense to you? Because it sure does not make sense to me.  It breaks my heart at the same time as it totally infuriates me.

Did you know that ONE in FIFTEEN will be diagnosed with lung cancer? Those are some pretty scary stats. Most of us have more than 15 people in our circle of family and friends. That means you are very likely to be directly affected by lung cancer. Either because a loved one is diagnosed or because you, yourself, get that news someday. When the word comes that you or your loved one has lung cancer, I wonder if you are going to wish more had been spent on lung cancer research? Because right now, the odds that you will live even one year after lung cancer is found in your body are very, very slim.

There is no stigma associated with getting breast cancer or prostate cancer or colon cancer or, I suppose, any other cancer. But, people in general seem to think that people who get lung cancer deserve it. After all, isn't lung cancer the disease of smokers? People know they are testing fate when they pick up those cigarettes. So, let them just suffer the consequences of their actions. Right?

Well ... first of all ... NO ONE and I do mean NO ONE deserves to get cancer of any kind. It is a fact of life, I guess, that most all of us will be impacted in some way by cancer if we live long enough, but none of us really deserve to get it. 

It is NOT a fun disease to treat. People are sick, sick, sick. And often lose their hair. And all of their energy. And their memory. 

And, it is certainly not a cheap disease to treat. One ... ONE chemo treatment that I had cost over $34,000 and that was after a $22,000 grant. I had those treatments every 3 weeks for six or seven months. And, that was just the cost of the drug. It didn't include doctor, blood tests, or facility usage. Cancer can wipe a family out financially in no time.

But, back to the stigma associated with lung cancer. Did you know that 60 to 65% of all lung cancer survivors (because you become a survivor from the moment you are diagnosed) either have never smoked or are former smokers? In my case, I had quit 5 years previously. My cancer is one that both smokers and non-smokers get so there is no clear evidence that my smoking caused my cancer.

I attended a LUNGevity HOPE Summit in Washington, DC last week. I was amazed at the 150 survivors at that event. One girl was only 20. Her late stage lung cancer was found (finally) when she was 19. Another beauty was 24. She lost part of a lung to lung cancer. Heart-breaking. Neither girl smoked. Both were gorgeous. Both were physically fit. Both girls had such a difficult time convincing their doctors that there was something more than asthma going on that they didn't have their cancer discovered until it had metastasized. 

Even doctors have an erroneous image in their heads as to what a lung cancer  patient looks like. So, while they are lollygagging along treating symptoms and never even entertaining the idea that there might be something more serious going on, the cancer cells are spreading all over the body.

I met men and women who bicycle hundreds of miles a weekend. Coaches. Vegetarians. Physically fit, well-nourished, non-smokers. Lots of them. Lung cancer survivors, one and all. I don't know that an average age for the attendees was calculated, but I would guess it was around 45, maybe even less. 

All of this is to say that your mind's image of a lung cancer patient is probably wrong. He or she is probably as physically fit as you are. And is probably not as old as you imagined. And definitely likely does not have tobacco stained fingers that are still shakily raising that nasty cigarette up to be smoked. He or she might be your sister or your brother, your mom or your dad or your best friend. Or you.

The stigma that just won't go away STINKS. Worse than cigarettes and we all know how bad they stink.

It is causing doctors to misdiagnose or delay diagnosis until the odds of survival have decreased to almost nothing. It is causing the general public to think it is fine to underfund lung cancer research. It is causing a lot of people to die deaths they don't deserve.

The Good News

The news is BAD when we look at funding, awareness, and the number of people being diagnosed and dying from lung cancer. There really are not a lot of optimistic things to say about those things.

But, in spite of the limited funding, our scientists and oncologists are making significant progress. This is an exciting time in the research field. They are on the brink of making some discoveries that could change some of those dire statistics. 

At the HOPE Summit, we heard from some of the up and coming talents in the world of lung cancer research and they were inspiring. We have targeted therapy drugs coming. Immunotherapies. Perhaps even some chemo therapies that will be less toxic. I can't imagine the inroads that would or could be made if only lung cancer was given a significant amount of funding like the other two major cancers get.

There are a few groups out there working hard to raise awareness. As awareness is raised, perhaps more big corporations and names will jump on the bandwagon. CVS has recently begun a campaign to raise money for lung cancer. It is the first corporation I know of to begin backing such a campaign. As awareness is raised, there will be more money for research. But, there will also be more lives saved because the image of the old smoker with lung cancer will be replaced by the young vital nonsmoker with lung cancer. People will begin to realize that they are not immune to it just because they never smoked. And then we'll have real progress. It is a day I hope I live to see and I have developed a passion for doing what I can to help that day come sooner rather than later.

Won't you help me?

I just came across another article that I want to share here. It was written by Jamie Gorenberg who wrote for "Desperate Housewives" after her mom, a person who quit smoking 40 years earlier, was diagnosed with lung cancer. I want to share it with anyone who happens to read my blog because she says, more eloquently than I, how it feels to have someone you love diagnosed with lung cancer.

http://www.standup2cancer.org/article_archive/view/lung_cancer_coming_soon_to_a_non_smoker_near_you