LUNGevity Action Network Newsletter December 2023

Congress left for the holiday recess with a long to-do list, including finalizing appropriations for fiscal year (FY) 2024, which began October 1. Congress has passed two continuing resolutions (CR)s extending funding at FY 2023 levels to allow more time for a final package to take shape. The current CR provides for a tiered approach, with four of the twelve appropriations bills expiring on January 19 and the remaining eight on February 2. LUNGevity continues to advocate for the highest possible funding levels for lung cancer research through the National Institutes of Health, National Cancer Institute, and the Lung Cancer Research Program at the Department of Defense. 

We are also advocating for multiple bills that would improve access to lung cancer screening, treatment, and survivorship care. In November, we worked with Representatives Castor, Higgins, and Fitzpatrick on an op-ed about the importance of lung cancer screening awareness and access. The piece was published in The Hill and highlights the Increasing Access to Lung Cancer Screening Act (H.R. 4286) led by these representatives. You can write to your members of Congress regarding this and other legislative priorities using the action campaigns linked below in this newsletter.  

Increasing Federal Funding for Lung Cancer Research 

Congress is currently working on final appropriations for Fiscal Year (FY) 2024. This is a critical time to let your legislators know that investing in lung cancer research should be a top priority! 

Thanks to recent advances supported by years of research, new treatments are extending the lives of those living with lung cancer. However, much more progress is needed to treat the thousands of Americans who have received a lung cancer diagnosis – and to detect it earlier. 

To continue making progress in lung cancer treatment, prevention, and early detection, we need Congress to provide the highest possible funding levels for the National Institutes of Health, National Cancer Institute, and the Lung Cancer Research Program at the Department of Defense. In this action campaign, we are asking Congress to: 

  • Provide at least $49.22 billion for the NIH base budget, as proposed by the Senate Appropriations Committee, to spur more life-saving innovations across medical research; 
  • Provide at least $7.38 billion specifically for the NCI, as proposed by the Senate Appropriations Committee, to support continued progress against cancer through basic research; 
  • Provide at least $25 million for the Lung Cancer Research Program and maintain it as its own line item, as proposed by the House Appropriations Labor-HHS-Education Subcommittee. This program drives investments in high-risk, high-reward scientific projects specific to lung cancer; and 
  • Work in a bipartisan way to complete the FY 2024 appropriations process as soon as possible to avoid any delays or disruptions to the medical research system. 

These investments support groundbreaking research across the country, creating new jobs and economic activity in every state. Most importantly, they provide hope for thousands of patients that new discoveries can make a difference for them or their loved ones. 

Contact Your Legislators and Ask Them to Support Lung Cancer Research Funding! 

Increasing Access to Lung Cancer Screening Act 

Lung cancer screening using low-dose computed tomography (LDCT) is an effective tool to detect lung cancer early, when it is easier to treat and the prognosis for patients is often much better. However, less than 6% of those currently eligible are being screened. It is vital that we remove access barriers and increase awareness about the potential benefits of screening. 

The Increasing Access to Lung Cancer Screening Act would ensure that lung cancer screening is covered without cost sharing and without prior authorization requirements across all types of insurance for those currently included in screening guidelines. The bill would also expand eligibility for tobacco cessation services in Medicaid; establish a nationwide public awareness campaign on the importance of lung cancer screening; and authorize a study and report to Congress on the demographics of people diagnosed with lung cancer but not included in current screening guidelines. 

Join LUNGevity Foundation in asking your legislators to co-sponsor the Increasing Access to Lung Cancer Screening Act (H.R. 4286)! 

Comprehensive Cancer Survivorship Act 

According to the National Cancer Institute, there are over 18 million cancer survivors in the United States, a number that is projected to continue increasing in the coming years. Recent advances in cancer treatment and early detection have led to increased survival and quality of life for millions. At the same time, many cancer survivors face significant gaps in care as they go through not only active treatment but also living with the long-term effects of their cancer and treatment. We need to do more to support survivors throughout their journey.  

The Comprehensive Cancer Survivorship Act includes measures that would provide coverage for patients and providers to develop personalized treatment care plans; initiate a demonstration program with grants for patient navigation services; establish a program to provide workforce assistance to cancer survivors; and create a comprehensive cancer survivorship program that would provide educational resources to both survivors and healthcare providers, among other important advances. 

This legislation would make important advances in the delivery of high-quality, coordinated care for all cancer survivors. 

Write to your members of Congress today and ask them to co-sponsor the Comprehensive Cancer Survivorship Act! 

To see additional actions that you can take in support of our legislative priorities, please visit the Take Action page on the LUNGevity Action Network! 

Cancer Survivorship Summit Hosted by Congresswoman Wasserman Schultz 

Thanks to significant advances in early detection and treatment in recent years, there are over 18 million cancer survivors in the U.S. today. Now, it’s imperative that we do everything we can to improve quality of life and care at every stage of survivorship.  

LUNGevity was pleased to participate in the first annual Cancer Survivorship Summit hosted by Congresswoman Debbie Wasserman Schultz in South Florida on October 16. The Summit featured an impressive lineup of speakers headlined by First Lady Jill Biden, as well as expert panels and a resource fair with local and national organizations providing information to attendees. 

Congresswoman Wasserman Schultz (D-FL) and her staff brought together leading individuals and organizations in the cancer community to address life after diagnosis, highlight gaps in survivorship care, discuss policy proposals, and share local and national resources and support services. Hundreds of people attended the event at Nova Southeastern University, including cancer survivors, caregivers, providers, patient advocates, and students. 

Read more about the Summit and speakers in this blog post on the LUNGevity Action Network. 

End Lung Cancer Now 3rd Annual Gathering 

End Lung Cancer Now (ELCN) is an initiative of the Simon Comprehensive Cancer Center at Indiana University that is committed to turning the tide against lung cancer through prevention, screening, and clinical trial participation.  

ELCN held its 3rd Annual Gathering on November 3 in Indianapolis. This event drew survivors, caregivers, patient organizations, and other partners for a day focused on advocacy for the lung cancer community. Brandon Leonard, senior director of government affairs at LUNGevity, spoke about current policy priorities and ways for advocates to get engaged. The lineup of guest speakers also included Heidi and Pierre Onda, co-founders of the White Ribbon Project; Terri Ann DiJulio, a patient advocate and three-time lung cancer survivor; and Dr. Jerome Seid, a healthcare provider who is past president of the Michigan Society of Hematology and Oncology. 

A recording of the event and additional information including a “Playbook” of the day’s activities can be found on the ELCN website 

LCAM Legislative Action Press Conference 

This fall, LUNGevity was proud to partner with the American Lung Association, GO2 for Lung Cancer, Moffitt Cancer Center, and Roswell Park Comprehensive Cancer Center to coordinate a day of advocacy on lung cancer screening and early detection. 

New data shows screening rates remain in single digits — while lung cancer continues to take more lives than any other cancer, and most patients are diagnosed at late stages. 

On November 16, lung cancer advocates convened on Capitol Hill during Lung Cancer Awareness Month 2023, to draw attention to both stark statistics on lung cancer and real-world, actionable opportunities to put what we know about lung cancer to work to save lives through earlier intervention, more effective educational outreach, and eliminating needless, counterproductive barriers to access. 

With individuals affected by this most deadly cancer type by their side, today, these leading lung cancer organizations and Congresswoman Debbie Wasserman Schultz (D-FL) outlined a comprehensive slate of legislation to address the gaping divide between actionable, easily implemented policy and education initiatives and the realities that mean someone in the US dies of lung cancer every 4 minutes. 

Additionally, these efforts today are supported by a number of congressional leaders, including Congresswoman Kathy Castor (FL-14) and Senator Dick Durbin (IL), Congressman Vern Buchanan (FL-16), Congressman Brian Fitzpatrick (PA-1), Congressman Brendan Boyle (PA-2), and Congressman Brian Higgins (NY-26). 

We are grateful to Congresswoman Debbie Wasserman Schultz for leading the press conference with inspiring speakers including lung cancer survivor Dr. Sydney Barned and LUNGevity President and CEO Andrea Ferris.  

Following the press conference, advocates met with key congressional offices and concluded the day by meeting with Dr. Kathryn Kundrod of the White House Cancer Moonshot, which calls for expanded access to cancer screening as part of a national effort to end cancer as we know it. 

OVAC Grassroots Lobby Day 

LUNGevity is proud to be a part of One Voice Against Cancer (OVAC), a coalition of cancer patient, provider, and research organizations that advocates for more federal funding for cancer research, prevention, and early detection.  

OVAC will hold its annual Grassroots Lobby Day March 4-5, 2024 in Washington, DC, and advocates from across the country are invited to attend. This is a fantastic opportunity to advocate for increased federal funding for the NIH, NCI, and cancer programs at the Centers for Disease Control and Prevention (CDC). Registration is now open!  

LUNGevity will also be providing a limited number of scholarships to assist lung cancer advocates with travel costs to attend the event. The application is available here and will be open through January 12. We hope you can join us! 

HOPE Summit 2024 

Registration is open for the 2024 HOPE Summit in Atlanta, GA May 3-5! 

HOPE Summit is a unique weekend conference for people living with lung cancer, survivors, and caregivers to learn how to manage and navigate aspects of everyday life with lung cancer while building their community of support. 

The conference features inspirational speakers and key experts on practical issues of cancer survivorship. Sessions will cover many of the issues patients, survivors, and caregivers face in everyday life, including managing mental health and sexual health, and financial issues, such as navigating insurance and legal rights in the workplace. We will also have discussions on parenting through a lung cancer diagnosis. 

The Summit also offers peer-to-peer opportunities where attendees can hear directly from lung cancer survivors and caregivers who have walked the journey and have a firsthand view of what it is like to live, survive, and thrive after a lung cancer diagnosis. 

NEW this year – We will include families in our special weekend! We have planned programming for children from grades 1-12 during the day on Saturday. 

And don’t miss the Patient Resource Fair on Friday from 1-5 pm that will feature many partners and vendors, specific oncogene groups, pharmaceutical partners, and wellness resources. Live demonstrations and talks will occur throughout the afternoon. 

Meet Aurora, a special education teacher, PhD student, and lung cancer survivor-advocate from Philippines who currently lives in Chicago, IL. 

In August 2021, Aurora noticed that she frequently felt exhausted and had an incessant cough. Initially, she was concerned that she had COVID or perhaps just really stressed from work. Initially, her original primary care doctor saw that she was young and said she would be fine. He advised her to boil honey and tea. A month later she experienced chest pain, and they saw that she had an extra electrical pathway and told her she has Wolf Parkinson’s White syndrome. This led to more tests, and through the CT scan they saw a haze on her lungs. The doctors suspected that she had tuberculosis or another type of infection.  

Aurora faced numerous challenges and an almost three-month delay in getting a diagnosis due to her health insurance and the fact that she had no risk factors. In November, her primary care doctor finally approved her to have a PET scan and a biopsy. The first biopsy came back inconclusive. Finally, in December, and with a new healthcare team, Aurora was able to receive a proper biopsy and she was diagnosed with stage 3A lung cancer. She was 28 years old. 

“Honestly, the process of not getting diagnosed was more heartbreaking than receiving my actual diagnosis,” says Aurora. “This experience has opened up my eyes and reminds me that my story is not unique, and it’s actually quite normal in the United States. I’m motivated to help other patients become better advocates for themselves.” 

Aurora formed a support network of family and friends and sought a second opinion. She was more comfortable with her new medical team, which provided a more personalized treatment plan and enabled her to be an active participant in her healthcare decisions. 

In May 2023, Aurora attended the LUNGevity HOPE Summit in Rockville, MD. After HOPE Summit, Aurora joined the LUNGevity Action Network and began to post lung cancer advocacy videos on TikTok. She sought out additional opportunities to share her story and experience and use her voice to advocate for the lung cancer community. 

In September 2023, Aurora attended the Rally for Medical Research on Capitol Hill with LUNGevity, where she was able to attend advocacy training, a networking reception, and meet with legislators to encourage them to support an increase in federal funding for lung cancer research. In December 2023, Aurora shared her experience at the National Lung Cancer Roundtable. 

Aurora’s advocacy goals include removing barriers to care among underserved communities and helping to bring more people of color into the advocacy sphere. She believes that every human life deserves care with dignity. “Going through the system of healthcare is very exhausting as a lung cancer patient, and it is even more exhausting when you don’t know how to navigate it,” says Aurora. “I know that talking to patients and their families who have been affected, could have great impact for the future.” 

Her advice for new advocates is “Don’t be afraid to message someone on social media. A lot of advocates are active on social media and are very friendly people. I would also highly recommend attending the annual LUNGevity HOPE Summit. I met so many great people there. I met caregivers, survivors, and LUNGevity staff who were so genuine and pure!” 

Outside of teaching, graduate school, and advocacy, Aurora loves spending time with her dogs, traveling to tropical places, and learning new languages. She speaks Tagalog and English fluently and is learning Spanish. 

“Being exposed to different cultures makes my heart and soul happy,” says Aurora. “I am hoping to live a long life, but ever since this experience, I no longer take any moments for granted.” 

Aurora learned to surf alongside other cancer patients and survivors in Costa Rica with Project Koru.

This newsletter highlights many of the key policy issues on which LUNGevity is currently engaged, but we couldn’t fit them all here! For more information on our public policy approach, as well as comment letters that we have submitted to policymakers on a wide range of topics, please see the Public Policy page on our website. 

Join our network of lung cancer advocates to stay in the know about current legislative issues and advocacy actions.