November is Lung Cancer Awareness Month, a time when the healthcare industry recognizes the advances made recently in lung cancer research. In 2021, we thank the doctors, nurses, researchers, advocates and caretakers who have contributed, even in the smallest of ways, to the patients we serve – for every care plan thoughtfully prepared, every emotional counsel given, every dollar donated and every shoulder lent.
Lung Cancer Awareness Month is also a time to reflect on the tens of thousands of patients who are diagnosed each year with small cell lung cancer (SCLC), the most aggressive form of lung cancer which makes up 13 percent of lung cancer cases in the U.S.1,2 It is a moment to acknowledge the experiences of many who face stigma, fear and isolation, and to stand with caregivers and families who confront profound emotional challenges as a result of a loved one’s diagnosis. Importantly, it is an opportunity to empower those who may be hesitant to learn about their diagnosis, and to remind them that there are others in their shoes who have found hope and connections to resources.
Living with SCLC, whether as a patient or a caregiver, can demand dedication and strength, often without much preparation. From adjusting to a new lifestyle to finding ways to manage your own emotional well-being, there are several challenges – challenges that can be overcome with a little spark of empowerment and connection.
Nothing Small About It puts real people and their stories at the center of the experience, enabling those living with SCLC to become informed advocates in their health and well-being. The program site serves as a “home base” to U.S. patients and caregivers who are interested in learning more about SCLC and how to find support. Here’s how you can get started:
“I made my community. I created it. Every day I would try to make friends, be friendly with somebody at the hospital or on the street. I didn’t want to be alone in this whole thing, and these people reminded me that I was alive and human.”
-Nina, living with SCLC for seven years
“There are days that it’s really hard, but don’t let them go through this alone. Surround them with love, support, family. You’ve got to move forward, and you got to make it the best life for them you can.”
-Jody, SCLC caregiver for five years
“It took me awhile to swallow my pride and realize I needed help. I wish somebody would have told me then how much research matters and that the envelope could be pushed to where we are today.”
-Montessa, living with and advocating for SCLC for 14 years
“In the early days after my mom’s diagnosis and I would even say until now, I’m the nagging, annoying daughter, which frankly, I feel has kept her alive even though I don’t live in the city where she lives. I’m able to email and call her doctors to make sure she gets the best care.”
-Kristen, SCLC advocate and caregiver
“I needed to know that there was someone there when I had questions about how I was feeling, about how my body was reacting, and I needed to know that I had a doctor that was going to give me positive reinforcement.”
-Annette, living with SCLC for three years
“Be very open about your small cell with your friends and family. Make sure you use them as a support system for you, because that is the most important thing.”
-Kim, lived with SCLC for five years
In the spirit of collaboration this Lung Cancer Awareness Month, Nothing Small About It wanted to shine a light on some advocacy organizations that are having an impact in communities across America.
Lung Cancer Awareness Month 2021 – Advocacy Reflections
By Neena Patil, chief legal officer, Jazz Pharmaceuticals
November is a time to recognize the recent advances made in small cell lung cancer (SCLC), especially the latest efforts from patient advocacy groups that are committed to focusing on this community. At Jazz, we share this same commitment, and have had the privilege of working alongside several of these organizations to offer Nothing Small About It as a resource to people living with SCLC and those who help care for them.
Recently, I was honored to check in with a few of our collaborators in the space and learn more about some of the progress and new programs that are underway. Below are a few of the highlights from our virtual conversation.
Carly Omstein, The American Lung Association: The American Lung Association offers a wide variety of resources for those concerned about lung cancer, newly diagnosed, in treatment, finished with treatment and caregivers. Our website, Lung.org, describes the various types of lung cancer, including SCLC, and offers a Lung Cancer Treatment Planning Tool depending on the type of lung cancer a patient is diagnosed with. Coming soon to Lung.org will be a new section on brain metastases, which we know that SCLC patients are more at risk for.
Lanni Boyd, GO2 Foundation: We have a large initiative focused on small cell lung cancer that is taking a multi-pronged approach to increase education and awareness and build relationships within the small cell community. We are refocusing all of our content across various channels (print education, website/online communities, HelpLine and support programs) to make education about small cell lung cancer and its treatment more available and accessible. At the same time, we are learning from patients, caregivers, and on-the-ground providers about how to best reach, engage, and support this community.
Jim Baranski, Lung Cancer Foundation of America: Lung Cancer Foundation of America (LCFA) is working on getting lung cancer and SCLC in the news this week and during November in local tv and radio media outlets across the country.
Carly Omstein, The American Lung Association: On November 1, we will release the annual Lung Health Barometer survey, which provides a critical look at public awareness and attitudes regarding lung cancer to inform a roadmap to defeat the disease. On November 16, we will launch our 4th annual State of Lung Cancer report, which examines the burden of lung cancer at the state level. In addition, we are launching PSAs focused on improving clinical trial enrollment amongst Black Americans, a campaign focused on helping caregivers learn about biomarker testing and education about minimally invasive surgery and bronchoscopy.
Lanni Boyd, GO2 Foundation: We are planning a lot! We are already in the midst of a qualitative research study on how to best support people with small cell lung cancer. In addition, we are planning new educational materials, more outreach, and more ways of supporting the community. Our new “Gathering HOPE” program allows the community to meet, even in a virtual, safe environment. We will be focusing on the SCLC Community in December in our SCLC Lung Cancer Living Room. Finally, stay tuned for exciting changes to the Lung Cancer Registry in early 2022, where we will be able to learn from every patient even more easily and efficiently than we are right now.
Jim Baranski, Lung Cancer Foundation of America: We’re eagerly awaiting updates on two young investigator research grant awards in SCLC along with producing Spanish-language content aimed at diversity, equity and inclusion topics.
Carly Omstein, The American Lung Association: During November’s Lung Cancer Awareness Month, the American Lung Association’s LUNG FORCE initiative is uniting the nation to stand together against the leading cancer killer, lung cancer. Throughout the month, we will be sharing new lung cancer awareness information, our State of Lung Cancer Report, inspiring patient stories and lifesaving lung cancer screening information. Be sure to visit Lung.org or follow us on your favorite social platform to learn more.
Lanni Boyd, GO2 Foundation: Each year, GO2 Foundation’s overall goal for Lung Cancer Awareness Month is to raise awareness, educate, and connect the lung cancer community. This November, our theme is Lung Cancer: It’s Personal, Faces of Lung Cancer. Because behind the numbers are real people — mothers, fathers, brothers, sisters, aunts, and uncles — who deserve better outcomes, compassion, and support no different than with any other disease. We will feature real people and their powerful stories throughout the month across multiple channels, while making it easy for anyone to add their voice to the national dialogue with an online toolkit. From video survivor spotlights to sharing face and fact graphics on social media, to advocating for more research funding and using Facebook frames and Zoom backgrounds – there are many ways to make noise this November!
Jim Baranski, Lung Cancer Foundation of America: In honor of Lung Cancer Awareness month, LCFA is asking everyone to share these Lung Cancer “By the Numbers” facts. You can also download and share LCFA’s Lung Cancer social media posts and infographic.
Carly Omstein, The American Lung Association: Research provides hope and saves lives. This is especially true when it comes to lung cancer research. Lung cancer research can help develop better treatments, increasing the survival and quality of life for patients. In addition, our Saved by the Scan campaign has resulted in over 600,000 screening eligibility quiz completions and a 66% increase in awareness of low-dose CT scan among former smokers. We will continue to promote this important awareness campaign to make sure that lung cancer cases are caught early, when the five-year survival rate is much higher.
Lanni Boyd, GO2 Foundation: The most important takeaway is that anyone, anywhere can be a champion for the cause – and the tools and resources we offer are not limited to November!
Jim Baranski, Lung Cancer Foundation of America: The most important takeaway message for LCFA is that compared to as little as a decade ago, people are now #LivingWithLungCancer, thanks to research!
Each person who has a connection to lung cancer has a role to play in making patient voices heard – whether it’s for yourself, a loved one or a person in your care. In the coming year, let’s continue to come together at the table to change the way SCLC is studied, taught and lived.
1 American Cancer Society. What is lung cancer? https://www.cancer.org/cancer/lung-cancer/about/what-is.htm. Updated October 1, 2019.
2 American Cancer Society. Key statistics for lung cancer. https://www.cancer.org/cancer/lung-cancer/about/key-statistics.html. Updated January 12, 2021.