LUNGevity Action Network Newsletter June 2023

Braidwood Management Inc. v. Becerra

The United States Fifth Circuit Court of Appeals is currently considering a case called Braidwood Management Inc. v. Becerra that could have significant implications for access to services such as lung cancer screening. Previously, a judge in Texas ruled partially in favor of plaintiffs in the case, a decision that could endanger coverage of preventive services and screenings with no cost sharing for patients. To learn more about the case and how LUNGevity is engaging on this issue, please read our latest blog post.

Biomarker Testing

LUNGevity is working with the American Cancer Society Cancer Action Network (ACS CAN) and other partners to increase access to biomarker testing at the state level. Legislation has been introduced in 18 states and has been passed in seven states: Arkansas, Georgia, Kentucky, Maryland, New Mexico, New York and Texas. The bills require coverage for guideline-recommended biomarker testing for cancer and other diseases by state Medicaid programs as well as commercial insurers regulated at the state level. The legislation is pending in several other states, including California, Massachusetts, Ohio, and Pennsylvania.

Has biomarker testing played a role in your cancer diagnosis and treatment, or that of someone you love? We invite you to share your story with us so that we can better understand your experience with lung cancer. You can also let us know if you would be interested in sharing your story with policymakers as they consider legislation such as the bills mentioned above.

End of Public Health Emergency

On May 11, the Public Health Emergency (PHE) for COVID-19 officially ended, more than three years since it was originally declared. The PHE, which was extended multiple times, provided for flexibilities in healthcare delivery during an unprecedented epidemic. While some changes were made permanent or extended in other ways, others have now ended with the PHE. For more information on some of the most noticeable impacts, please see LUNGevity’s blog post on the end of the PHE.

NIH Director Nomination

On May 15, President Biden announced his intention to nominate Dr. Monica Bertagnolli as the next director of the National Institutes of Health (NIH). Dr. Bertagnolli currently serves as director of the National Cancer Institute (NCI), the largest institute of the NIH. During her tenure as head of the NCI, Dr. Bertagnolli has gained widespread praise from the cancer community. This spring, she unveiled a plan to implement President Biden’s Cancer Moonshot Initiative. She has also spoken openly about her own journey with breast cancer, following her diagnosis just months after taking the helm of the NCI. Dr. Bertagnolli’s nomination will now be considered by the Senate. 

To ensure that lung cancer research receives investment that matches the impact of the disease, your elected officials need to hear from you throughout the year when they are making key decisions.

In June and July, the House and Senate appropriations subcommittees are developing bills to designate funding levels for specific programs and projects, including funding for the  National Institutes of Health, the National Cancer Institute, and the Lung Cancer Research Program (LCRP) within the Congressionally Directed Medical Research Programs at the Department of Defense.

LUNGevity is working year-round with our advocacy partners to advocate for $60 million for the LCRP to accelerate high-impact, translational research and improve patient outcomes.

Your voice can make a difference! Please take a moment to write to your members of Congress via the LUNGevity Action Network and ask them to support the LCRP in FY 2024.

Save the Date for the 2023 Rally for Medical Research!

LUNGevity is proud to be a partner for the Rally for Medical Research, an annual event that brings together advocates from around the country and across the medical research community in support of funding for the National Institutes of Health (NIH).

The 2023 Rally will take place in person September 13-14 in Washington, DC, and will include a training, reception, and breakfast program prior to a day of meetings with congressional offices.

Look for an email from the LUNGevity Action Network in the coming weeks with more information about registration and travel scholarships!

Thank you to everyone who visited the LUNGevity Action Network booth at the Patient Resource Fair and attended our Policy & Advocacy presentation at LUNGevity’s HOPE Summit May 5-7. It was wonderful to meet so many current advocates and to connect new advocates to resources, training, and tools to help drive progress.

Learn, connect, and find hope in lung cancer at LUNGevity’s International Lung Cancer Survivorship Conference September 22-23, 2023!

The International Lung Cancer Survivorship Conference (ILCSC) is a virtual educational conference provides opportunities for attendees to hear from world-renowned researchers on the latest treatments, learn about ways to manage your lung cancer and treatment journey, and find hope in today’s scientific progress.

ILCSC will give you a better understanding of the science behind your disease so you can collaborate more effectively with your healthcare team and be a more active participant in your healthcare decisions.

The conference is packed with sessions bringing you the latest and most pertinent information and resources, including educational presentations by clinicians, healthcare providers, and researchers, expert panels, and dedicated breakout sessions for special interests.

Visit the ILCSC website for more information.

Meet Dr. Sydney Barned, a lung cancer survivor-advocate from Jamaica, who currently lives in Maryland.

Sydney draws upon her unique experience as a physician and as a person living with lung cancer to help empower lung cancer patients and caregivers and to educate fellow health care providers and the public about the realities of lung cancer.

Sydney is a doctor of internal medicine and a hospitalist. She was 33 years old and beginning her medical residency when she was unexpectedly diagnosed with stage IV lung cancer in February 2017.

Biomarker testing revealed that Sydney had ALK-positive lung cancer. She was able to take targeted therapy and remained NED for over 5 years Sydney says that was when she decided to “use her good fortune” along with her personal experience and her professional expertise to help others through advocacy.

Sydney has engaged in multiple types of advocacy. She has shared her story with policymakers, regulators, cancer researchers, healthcare providers, advocacy organizations, and the media. She has been interviewed for numerous print and digital media and podcasts. And she also uses her own social media accounts to raise awareness about the issues that impact the daily life of lung cancer patients.

The main points that Sydney wants people to know about lung cancer are that it can affect anyone regardless of age, gender, and smoking history. She wants to help patients and providers know the symptoms and what to look for so that more cases of lung cancer can be detected and treated earlier. And she wants policymakers to increase federal funding for lung cancer research and remove barriers to access to care.

In March 2023, Sydney shared her experience and expertise during hearings in the Maryland Senate and House to support the passage of bills that will increase insurance coverage for biomarker testing. The bill passed in both chambers and the Governor signed the bill into law on May 3, 2023. Sydney was able to attend the signing ceremony in the Annapolis.

Sydney’s advice for new advocates is to be open to trying different types of advocacy until you find the ones that are best suited to you. She says that learning from other advocates and advocacy organizations can be a great place to start.

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.