Lending a Hand: Lung Cancer Advocacy Groups Help Those in Need
Advocacy groups are making a difference in the lung cancer community. What can they do for you?
BY Allison Gilchrist, Laura Joszt, Greg Kennelty, Anita T. Shaffer and Brielle Urciuoli
PUBLISHED December 09, 2016
Keeping on top of treatment options, finances and emotions can become overwhelming when patients are faced with a lung cancer diagnosis.
However, thanks to a number of nonprofits and advocacy organizations, patients and caregivers can lessen their burden and take advantage of all the services, information and help that is provided.
No two advocacy organizations are the same, and it is important to research which can best provide the help that each patient needs. In addition to local organizations, there are many national and international lung cancer groups motivated to better the lives of patients. CURE® is thrilled to collaborate in an Advocacy Spotlight Partnership program with many well-respected lung cancer groups, including the ones listed below. As partners in this program, organizations supply CURE® with information about activities, trends, issues, educational opportunities and programs that are of interest to patients with cancer.
HELPING INDIVIDUAL PATIENTS
Free to Breathe
Patients with lung cancer and their caregivers can now call a toll-free number to receive emotional support and answers to some of their questions about life after diagnosis and maximizing quality of life. The hotline is run by Free to Breathe, a lung advocacy organization.
“With a five-year survival rate of only about 17 percent, it can be hard for patients to find other lung cancer survivors in their local community,” Cheryl Petersen, the program director, says. “In fact, many of the survivors and patients [Free to Breathe] talks to have never met another lung cancer survivor.”
To help ensure that the hotline is as helpful as possible for those affected by lung cancer, Free to Breathe conducted research and interviews using patient and caregiver perspectives to guide the program’s design.
Patients and caregivers alike stressed the importance of education about the condition. Many respondents explained that the level of distress they faced at the time of diagnosis precluded them from internalizing much of the information they were given.
The most requested information surrounded the following topics: lung cancer diagnosis and treatment; molecular testing; second opinions and centers of excellence; and clinical trials.
Another area of concern identified by Free to Breathe was the relatively weak support structure for caregivers. They specifically requested guidance on how to care for loved ones in the best way, concrete ideas for what they could do to help their loved ones, ways to discuss important topics about care when the disease progressed and reminders of the importance of self-care and a healthy lifestyle.
Each member of the Free to Breathe staff who answers phones undergoes training to ensure that callers receive a consistent level of support. The staff does not provide any medical or nursing advice, but rather encourages patients to consult with their health care providers in regard to any issues related to their health.
Petersen told CURE® that, ultimately, the patients and caregivers surveyed to help guide the hotline program “indicated their enjoyment of survivor stories, especially when the details were similar to their own circumstances.”
Patients and caregivers can call the support line at 1-844-835-4325. It is staffed Monday through Friday 8 a.m. to 4 p.m. CDT (9 a.m. to 5 p.m. EST).
The LUNGevity Foundation is literally getting active in its efforts to help people with lung cancer. Its latest work revolves around walk/run events designed to raise awareness, but the scope of its support services for patients and survivors is vast.
From educating patients and their families about the disease to supporting them through events and research, the LUNGevity Foundation has been focused on changing the outcome of lung cancer diagnoses since 2001.
“LUNGevity is committed to raising awareness that anyone can get lung cancer. We believe that the dialogue can move beyond the stigma of the past and focus on the incredible progress being made in lung cancer research over the last five years, resulting in new treatment options for patients,” says Linda Wenger, senior vice president of marketing and communications for the LUNGevity Foundation.
Wenger says LUNGevity utilizes “Breathe Deep” events, which are volunteer-run, throughout the country as one vehicle for awareness. These events, normally walk/run-type events, celebrate survivors and honor those lost to lung cancer. “These walks bring together patients and survivors, caretakers, advocates and health care providers to build community and support for those affected by lung cancer,” says Wenger.
LUNGevity also offers educational programs to patients with lung cancer and their families, such as Lung Cancer 101. This resource is a comprehensive, medically vetted online guide to understanding how lung cancer develops, how it can be found and how it can be treated.
Online survivor and caregiver resource centers are provided by LUNGevity to help patients live well despite their diagnosis, and even aid patients in formulating important questions to pose to their medical teams. The group also provides downloadable booklets on clinical trials, treatment options and types of lung cancers.
Beyond online resource centers and downloadable packets, LUNGevity also offers an entire spectrum of offline resources. “LUNGevity offers the largest network of online support and in-person survivorship programs for all people affected by lung cancer. Patients and caregivers can receive peer-to-peer support and information from our Lung Cancer Support Community (LCSC) message boards, and be matched with a LifeLine mentor who has had similar experiences,” says Wenger. “LUNGevity HOPE Summits are conferences designed specifically for patients, survivors and caregivers to hear from medical experts, inspirational speakers and each other. These unique meetings build communities of hope and support for people at all stages of a lung cancer diagnosis.”
For all the benefits patients reap through LUNGevity, the proverbial sowing is minimal.
“LUNGevity educational resources are free of charge to patients and their families, as are LCSC and Lifeline. HOPE Summits are free to attend; however, there is a $50 registration fee for the annual National HOPE Summit held in May in Washington, D.C., to cover two-and-a-half days of meals. First-time survivor participants may qualify for a full or partial travel grant,” says Wenger.
CONTRIBUTING TO RESEARCH
Bonnie J. Addario Foundation
If Bonnie Addario has anything to say about it, researchers will soon understand why young never-smokers get lung cancer.
Unraveling genetic reasons for lung cancers that strike people under the age of 40 has become one of the research passions of the Bonnie J. Addario Lung Cancer Foundation. Addario, whose own battle with lung cancer started when she was in her 50s, turned her attention to the problems faced by younger patients about five years ago when she received a phone call from a distraught mother searching for help for her 21-year-old daughter.
Lung cancer is so prevalent that even a small percentage of young, healthy patients adds up to a large number of people, Addario notes. “If you look at 1.4 million people diagnosed around the world every year, 2 percent is a big number of patients,” she says.
The foundation started a group called Jill’s Legacy to help raise money for young patients with lung cancer. And, the Addario Lung Cancer Medical Institute (ALCMI), which the foundation formed to conduct a variety of research into the disease, set out to determine the characteristics of lung cancer in younger people.
Tapping into the best minds in the field, ALCMI designed an innovative clinical trial to find patients under age 40 and analyze their tumors to see whether they have gene mutations that are different from those found in older people with lung cancer. Barbara J. Gitlitz, M.D., from the University of Southern California, and Geoffrey R. Oxnard, M.D., from the Dana-Farber Cancer Institute, are leading the study.
“We use social media to find people around the world,” says Addario. “People can enter the study without ever leaving home.”
The ongoing study has attracted 120 participants from the United States and Europe thus far, according to findings presented at the World Conference on Lung Cancer in September. Preliminary results show that more than 75 percent of the participants have a mutation that can be treated with a targeted therapy.
Addario believes that shining a light on the nature of lung cancer among young people will help battle the stigma that accompanies the disease.
“I think they’re going to change the face of lung cancer,” she says of the young patients. “We’re starting to see people understanding that although smoking is a trigger for lung cancer — and many other cancers and heart disease — lung cancer was wrongly stigmatized for all these years and underfunded because of it.”
For more information about the Genomics of Young Lung Cancer study, visit its website at openmednet.org/ site/alcmi-goyl.
Lung Cancer Alliance
The stigma surrounding lung cancer is very real, and it has necessitated strong campaigning by the Lung Cancer Alliance to change people’s minds. Historically, lung cancer has been linked to smoking, and so people often believe that patients get lung cancer as a result of behavioral choices they have made.
In 2012, the alliance launched its first national lung cancer campaign with provocative images and a campaign that went viral and started people talking across the country. The “No One Deserves to Die” campaign used characters against whom the public might have an unconscious bias, such as a cat lover, a hipster or someone with a lot of tattoos.
Kay Bayne, director of marketing at the Lung Cancer Alliance, explains that the alliance ran ads that just said “Cat lovers deserve to die” and watched the reactions roll in. A week later, there was the reveal. The ads then said, “Cat lovers deserve to die if they have lung cancer.” That first campaign was the most successful, and really changed the way people spoke about the disease, Bayne says.
Changing the stigma around lung cancer can have a very important impact on individuals who are diagnosed with the disease. Although lung cancer claims more lives each year than colon, prostate and breast cancers combined, lung cancer research receives less funding than those other three cancers. According to Bayne, stigma is a large part of the puzzle when it comes to making progress combatting the disease.
In the second campaign, launched in 2013 and called “Moments,” the alliance focused on living more moments by getting screened, and noted that smoking is not the only risk factor for lung cancer.
“If we find lung cancer early, it can be surgically removed and you can live,” Bayne says. “Just like any other disease, to find it early and get it is better than to find it at a late stage when it has spread throughout your body.”
The campaign also discussed risk, informing former smokers that even if they have stopped smoking, they will always be at a higher risk than the nonsmoking population.
The alliance’s third campaign, in 2015, was titled “How It Feels,” and placed the focus on people diagnosed with lung cancer and their families, letting them know that there are others out there who understand what they are going through. Impact from that campaign has led to a growth in the organization.
“I think the importance of these campaigns, and how they can make people feel a part of the organization, cannot be overstated,” Bayne explains.
American Lung Association
Lung cancer remains a silent epidemic among women, despite the number of patients who lose their battle to the disease each year.
The results of the American Lung Association’s (ALA’s) second annual Women’s Lung Health Barometer show that just 1 percent of women consider lung cancer to be a “top-of-mind” threat to their health, despite the fact that lung cancer kills nearly twice as many women as any other cancer each year.
With this knowledge gap in mind, the ALA launched LUNG FORCE — an initiative with the expressed mandate to “unite women to stand together against lung cancer and for lung health.”
In practice, LUNG FORCE seeks to make lung cancer a public health priority by bringing awareness to the issue and calling for policy changes and increased research funding for the disease.
American Lung Association National President and CEO Harold P. Wimmer, the architect behind the LUNG FORCE initiative, told CURE that, in general, the “strong, pervasive stigma associated with lung cancer” is the greatest challenge the initiative faces.
This stigma may be exacerbated for women, as lung cancer is sometimes perceived to be a “man’s disease.” Over the last 38 years, the lung cancer mortality rate for men fell significantly, while the mortality rate for women skyrocketed.
Stigma may also contribute to the fact that only 25 percent of women reported to the ALA Health Barometer that they’ve ever discussed lung cancer with their health providers. Just 17 percent of lung cancer cases among women are diagnosed early.
The ALA is calling for more investment in cancer research, and has committed to redoubling its efforts to make sure future federal austerity limits do no hamper this progress.
“The bottom line is that no one deserves cancer. Anyone can get lung cancer, and everyone deserves sympathy and support,” Wimmer concludes. LUNG FORCE is “a bold initiative to take lung cancer out of the shadows and address this disease head-on.”
Global Lung Cancer Coalition
The Global Lung Cancer Coalition (GLCC), like other organizations that advocate for patients with lung cancer, is focused on raising awareness — but on an international level.
For 15 years, and throughout 34 countries, the GLCC has been effectively raising awareness about the disease through its wide network of information, learning materials and organizations.
“The GLCC would like to see an increase in global public awareness of lung cancer. The GLCC is a loose coalition of over 30 organizations from over 20 countries,” says Jesme Fox, medical director for the GLCC. “Each organization has a focus on increasing awareness of this disease. The GLCC provides a network to share ideas and is a source of tools for member organizations to achieve this awareness-raising goal.”
The GLCC, which includes organizations from places including the United States, United Kingdom, Canada, Denmark, France and Germany, says it bases its information and efforts around four main goals. These goals are to place lung cancer on the global health agenda; to lessen the stigma of lung cancer among patients, families, health care providers, policy makers and the public; to empower lung cancer patients and their families to be active in their own care; and to effect change in legislative and regulatory policies in order to better the care of patients with lung cancer.
“The GLCC provides tools for member organizations to advocate on lung cancer issues. The GLCC facilitates an annual global lung cancer journalists’ award for excellence in lung cancer reporting, provides patient information on lung cancer signs and symptoms and in the area of new developments, such as immunotherapy, and has produced the global lung cancer e-atlas, available on the GLCC website (lungcancercoalition.org), which hosts lung cancer data for every WHO country,” says Fox. Fox adds that the GLCC also funds research and marketing efforts in order to better raise awareness about the disease and aid in the furthering of the treatment of patients with lung cancer.
“Though a common cancer, lung cancer is characterized by much negativity — overall poor prognosis, stigmatized by association with tobacco and relative lack of research investment. We are all committed to overcoming this,” Fox says.