On Thursday, September 25th, 8PM ET/ 5PM PT, #LCSM Chat will discuss the existing barriers in lung cancer screening in late 2014.
Recently I’ve heard some lung cancer patients say they feel abandoned by lung cancer advocacy groups. These patients think the groups are focusing too much on early detection with lung cancer screening, and have abandoned those who already have the disease.
As a metastatic lung cancer patient, I don’t feel abandoned. I feel lung cancer advocacy has never been more vibrant or successful than it’s been in the past year. In the past year, lung cancer advocacy has featured:
- Wide-spread national media coverage about lung cancer: Valerie Harper on “Dancing with the Stars” and other national shows, national news coverage of testimony on Capitol Hill about the need for lung cancer research funding, the “Turquoise Takeover” of prominent landmarks, and Molly Golbon’s cancer journey documented on NBC, for example.
- Print and online articles discussing the need to eliminate lung cancer stigma and featuring the hope offered by new treatments and clinical trials.
- More advocates, patients, doctors, and researchers posting and collaborating with the #LCSM hashtag on Twitter.
- An increase in lung cancer bloggers compared to last year.
The focus of lung cancer advocacy hasn’t shifted away from research or treatments. By my count, there are more new treatment options offered or announced this year for a wider range of lung cancer types than in any previous year: two new FDA-approved targeted therapies, immunotherapy trials for all lung cancer types, an innovative new trial for squamous cell LC, a new study of Young Lung Cancer, new targeted drugs for mutations, newly-discovered mutations … the list is long.
Lung cancer screening with LDCT is a big deal because it is projected to save 18,000 lives PER YEAR by catching lung cancer before it spreads. That’s more lives than most new targeted lung cancer treatments will save in a year.
We’re seeing more public discussion of lung cancer screening than treatments for four reasons:
(1) Lung cancer screening with LDCT gained major support at the end of 2013.
In December 2013, the US Preventative Services Task Force recommended lung cancer screening with LDCT. As a result, the ACA now requires private insurance plans to cover LDCT as of January 2015.
(2) LDCT is becoming more available.
More hospitals and clinics are beginning to offer LC screening with LDCT, and are advertising that fact.
(3) The need for support is urgent.
The majority of lung cancer patients are over age 65. In February, the Centers for Medicare and Medicaid (CMS) began evaluating whether to provide insurance coverage for LC screening with LDCT. CMS will decide in November. We must act NOW.
(4) Individual advocates have a chance to make a difference that will save lives.
The CMS decision is being made by a branch of the US government. Our voices are needed to ensure those over 65 have access to LC screening, since most of them have Medicare as their primary insurance. Lung cancer advocacy organizations are leading the charge.
The lung cancer community is still dedicated to raising awareness for ALL lung cancer patients and increasing research that will allow more lung cancer patients to be cured or to live with lung cancer as a chronic illness. Advocating for LC screening is just one way to help more patients survive. It’s part of the 2014 sea change in lung cancer.
If we see ice bucket challenges for ALS….I never see anything to raise money for lung cancer research…has anyone seen anything….Everyone is focused on breast cancer…you see it every where but not about lung cancer…I am a triple survivor in 18 months…on to the brain and they cured the first cancer in the left lobe for a year and then it returned to my brain, took that out June 8th and the left lobe out August 8th….and I return to work full time on Oct 3rd….it has been a hell of a trip…..I am still here to talk about it LOL…God is good…
Yes, it’s very frustrating to see armies of pink raising money for breast cancer while lung cancer–which kills more people and receives far less funding–gets relatively little attention.
However, advocacy organizations are working to change that. LUNGevity, Bonnie J. Addario Lung Cancer Foundation, Lung Cancer Alliance, Free to Breathe, Team Draft and American Lung Association’s LUNG FORCE are some of the 19 organizations working in the US alone to increase lung cancer awareness, education, patient support and research funding. I know four different organizations have 2014 fundraising events in just the Seattle area, and more events have been held all over the country. In addition, some groups lobby federal lawmakers for more government research funding for lung cancer. We’re not as visible as breast cancer yet, but we’re growing and gaining momentum! We need a way to change the public’s perception of lung cancer and eliminate the stigma. Lots of people are working on that.
As for the ALS Ice Bucket Challenge, NO other single fundraiser event has EVER been so successful. All nonprofits–lung cancer and otherwise–are analyzing it for fundraising strategies.