Why Advocates Seem to Talk So Much About Lung Cancer Screening

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.

Palliative Care for Lung Cancer Patients (#LCSM Chat 16-Jan-2014)

[This is reposted with permission from the #LCSM Chat website]

The next #LCSM Chat will occur on Thursday, January 16, 2014 at 5 PM Pacific (8 PM Eastern). The subject will be “Palliative Care for Lung Cancer Patients” moderated by lung cancer patient and advocate Janet Freeman-Daily. Please note this discussion will focus on comfort care provided to a cancer patient at any time after diagnosis–before, during or after active treatment. We will not be discussing hospice.

#LCSM has invited several palliative care specialists to participate in this chat. Confirmed guests include @ctsinclair (Christian Sinclair, MD, #hpm chat co-founder, editor of pallimed.org), and @chatburn (Andi Chatburn, MD, kansascityhospice.org).

You can learn more about how to participate in an #LCSM tweetchat here. If you find tweetchats are not your cup of tea, please feel free to add your questions or concerns about palliative care in the comment section of this blog post by noon Thursday January 16, and we’ll do our best to address them during the chat if time allows.

Chat Topics

T1: What services and benefits can palliative care specialists provide to lung cancer patients and their families?

T2: How can we help patients, family members and medical professionals understand differences between palliative care and hospice?

T3: How might healthcare providers best introduce the topic of palliative care to their lung cancer patients?

T4: How can we help more lung cancer patients take advantage of palliative care services?


The key points of the National Cancer Institute’s factsheet on palliative care say:

  • Palliative care is comfort care given to a patient who has a serious or life-threatening disease, such as cancer, from the time of diagnosis and throughout the course of illness. It is usually provided by a specialist who works with a team of other health care professionals, such as doctors, nurses, registered dieticians, pharmacists, and social workers.
  • Palliative care is different from hospice care. Although they share the same principles of comfort and support, palliative care begins at diagnosis and continues during cancer treatment and beyond.
  • Hospitals, cancer centers, and long-term care facilities provide palliative care. Patients may also receive it at home. Physicians and local hospitals can provide the names of palliative care or symptom management specialists.
  • Palliative care addresses the emotional, physical, practical, and spiritual issues of cancer. Family members may also receive palliative care.
  • Research shows that palliative care improves the quality of life of patients and family members, as well as the physical and emotional symptoms of cancer and its treatment.

A clinical trial conducted at the National Cancer Institute found palliative care improves survival and quality of life in advanced lung cancer. However, as discussed in a 2011 Los Angeles Times article, the palliative care specialty still faces challenges. A New England Journal of Medicine article recently stated, “Palliative care suffers from an identity problem. Seventy percent of Americans describe themselves as ‘not at all knowledgeable’ about palliative care, and most health care professionals believe it is synonymous with end-of-life care.” The challenges are even greater in developing countries. A global survey by the European Society for Medical Oncology found “a ‘pandemic of untreated cancer pain’ caused by too strict regulation of pain medication.”

More Information About Palliative Care

American Academy of Hospice and Palliative Medicine

Center to Advance Palliative Care and their patient-focused site

National Palliative Care Research Center