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I still remember the day I met Michael.  I had just returned from overseas to work in my law firm’s New York office and on my second day back I was tasked to help out with a deal that was signing.  I had no idea what the deal was and had never worked with this client before, so when I went to meet the in-house lawyer I would be working with I was understandably nervous.  Then there was Michael, really tall, rather intense.  He spoke fast with a slight Southern accent, and while he seemed to be reserving judgment on my usefulness, he was thoughtful and polite while he caught me up on our part of the transaction.  Over the next 12 days we worked together pretty much 24/7, if we weren’t locked up drafting agreements in conference room 2D, we were negotiating with bidders, forming issues lists, cracking jokes and eating way too many catered cookies.  It was an intense method of getting to know a person.  Luckily, the impressions I formed of Michael during that time, that he was a dedicated, smart, decent man who loved his family fiercely and threw himself wholeheartedly into everything he did, proved to be true over the next four years we worked together.  He became one of my favorite clients and a friend.  So when I was told two years ago that Michael had lung cancer, I was devastated.  My first thoughts were of shock and denial (of course), my second was “I didn’t know he smoked.”  Even though Michael never smoked, it is that second thought that may be the reason my friend never recovers from his lung cancer.

True to his nature, Michael McCarty has turned his illness into an opportunity to help others by fiercely advocating for lung cancer research.  In Michael’s own words here is the reason why stereotypes are killing almost 200,000 people a year in the United States alone.

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Lung Cancer – The Invisible Disease

There are some things you don’t forget; your first kiss, your wedding day, the birth of your child, and when the doctor tells you that you have terminal cancer.  I am a two year Stage IV lung cancer survivor and to reflect back on the day I was told that my survival rate is measured in months not years leaves me as angry and as hurt today as I was over twenty-four months ago.  I remember the weeks following that fateful day, I would stay up all night searching for answers, praying, and simply being mad at why this was happening to me, a young life-long non-smoker , a runner, a husband and father of three.  As angry as I was about my diagnosis I believe I was even more upset to learn about the statistics on lung cancer and how little money, time and research is dedicated to finding a lung cancer cure.

Each year almost 160,000 people will die in the U.S from lung cancer.[1]  That is approximately 438 people per day and the majority of those individuals will be women.  Lung cancer is the leading cancer killer of women and the leading cancer killer in every racial and ethnic group.[2]  And lung cancer is the second largest killer in the U.S. behind heart disease and will kill more individuals each year than breast, prostate, pancreatic and colon cancer combined.[3]   The five year survival rate for lung cancer is approximately 15% while breast cancer’s five year survival rate is over 90% and prostate cancer’s five year survival rate is 99%.  Yet, compared to these other cancers, lung cancer gets very little attention or research dollars.

For example, breast cancer receives $26,398 of federal funding per death; prostate cancer receives $13,419 of federal funding per death; and lung cancer receives a paltry $1,442 of federal funding per death.[4]  In raw dollars, lung cancer receives $800 million less in federal funding each year than breast cancer.[5]  So why does lung cancer, the greatest cancer killer, receive less attention and funding than other cancers?  The answer is the blame, shame stigma associated with lung cancer.  I can remember telling someone that I had lung cancer.  The first question I was asked was whether I smoked.  I said “no” and his response was good, “otherwise some would say you deserve the disease.”  Bingo.  That is it; people think lung cancer is deserved because of life style choices.  Well, no one deserves to die from this horrible disease; no one.

Current smokers make up only 20% of lung cancer patients, while 60% of lung cancer patients are former smokers or former light smokers and surprisingly, the final 20% is made up of individuals that never smoked.[6]  And non-smoker lung cancer deaths rank seventh among all cancers, more than leukemia, lymphoma or brain, with liver and prostate cancers only being slightly higher.

I once read that inaction is like being imprisoned and to act is to be free.  While there currently is no cure for my cancer, I knew I couldn’t just wait around to die with the shackles of inaction holding me haplessly in place.  I chose to act and to be free in the hopes that “lung cancer would be treated fairly, compassionately and with the same sense of urgency as other cancers”[7].  So I recently attended the 6th Annual national Lung Cancer Survivor Summit sponsored by Lung Cancer Alliance in Washington D.C.  The Lung Cancer Alliance is the oldest and leading national organization working on behalf of those living with and at risk for lung cancer and focusing on health policy and patient support services.[8]

As part of the Summit, the Lung Cancer Alliance organized a trip for lung cancer survivors to appeal directly to members of Congress.  We asked members of Congress to ensure that Federal research dollars are equitably distributed among cancers; that Medicare cover lung cancer screening; and to break the barriers to high quality care.

Overall, the reception on the Hill was very warm but there still remains a great deal of ignorance about lung cancer.  I asked one staffer if he could name the color representing breast cancer.  He got pink right away.  I then asked him if he knew what the color for lung cancer was.  He was stumped.  The color for lung cancer used to be clear (now white) because it is the invisible disease.  As I told many staffers, lung cancer can’t put together a pink army because we don’t have enough survivors.  One staffer commented to another group, that lung cancer advocacy efforts were all wrong and that lung cancer needs a celebrity spokesperson like breast cancer.  Unfortunately, the 85% that would be willing to be a spokesperson for lung cancer are dead and the other 15% who are fighting are very ill and don’t want to be associated with the disease because of the blame, shame stigma.

So how do we will build an army of survivors?  The answer is screening and research.  For instance, several studies, including the one cited below, indicated that breast cancer screening has reduced mortality from fifteen to twenty percent (15%-20%).[9]  Last year, the United States Preventive Services Task Force (“USPSTF”) determined that “annual screening for lung cancer … in a defined population of high-risk persons can prevent a substantial number of lung cancer-related deaths.”[10]  As a result, the USPSTF gave lung cancer screening a B recommendation making it an Essential Health Benefit requiring screening to be covered by most private insurance health plans (some twenty-five plus years behind breast cancer screening).  However, Medicare is currently not covering lung cancer screening in spite of estimates showing that screening could potentially triple or quadruple lung cancer’s five year survival rates.  Medicare needs to take action and follow the lead of private health insurance companies.

Lung cancer screening could increase our understanding of cancer and lead to additional research.  Screening can provide a baseline view on when, how and why a malignancy begins, spreads or develops a resistance to treatment.  This type of insight into the nation’s leading cancer killer could also help other cancers.  With screening acting as a spring board to additional research what is needed is to have lung cancer research funded on the same equitable level as other cancers.

Lung cancer, the leading cancer killer, should no longer be invisible.  Please help to shine the light on this horrible disease by breaking the shackles of inaction and getting involved.  You can start with these two organizations:  Lung Cancer Alliance and LUNGevity Foundation.

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In honor of Michael’s work, WorkerAnts.com is dedicating this week to raising awareness for Lung Cancer research.  Join us by sharing this story with others.

Sincerely,

Tammara Fort

Co-Founder of WorkerAnts.com



[1]  National Center for Health Statistics; http://www.cdc.gov/nchs/data/nvsr/nvsr61/nvsr61_04.pdf

[2] National Vital Statistics Report: Deaths: Final Data for 2009; NVSR Vol. 20, Number 3; published January 2012

[3] National Center for Health Statistics; http://www.cdc.gov/nchs/data/nvsr/nvsr61/nvsr61_04.pdf

[4] National Institutes of Health: http://report.nih.gov/rcdc/categories/ – Centers for Disease Control and Prevention: http://www.cdc­coalition.org/pg_budget.htm – Department of Defense: http://cdmrp.army.mil/ Statistical Sources: Howlader N, Noone AM, Krapcho M, et al. (eds). SEER Cancer Statistics Review, 1975-2009, National Cancer Institute, Bethesda, MD, www.seer.cancer.gov/csr/1975_2009/, 2012.

[5] Id.

[6] Lung Cancer Alliance

[7] Lung Cancer Alliance, mission statement

[8] www.lungcanceralliance.org

[9] Nelson HD, Tyne K, Naik A, et al.: Screening for breast cancer: an update for the U.S. Preventive Services Task Force. Ann Intern Med 151 (10): 727-37, W237-42, 2009.

[10] Annals of Internal Medicine on 31 December 2013.

 

3 years ago