LUNGevity Action Network Newsletter March 2023

This is a busy time in Washington, with the appropriations process in full swing, new leadership on many key congressional committees, and new members looking to make their mark. State legislative sessions are also well underway – or in some cases already wrapping up.   

In this edition we’ve provided updates on key policy priorities that affect the lung cancer community, as well as recent and upcoming activities for advocates.   


The appropriations process for fiscal year (FY) 2024, which begins on October 1, is now well underway. President Biden has released his proposed budget, and members of Congress have begun working on their priorities for the coming year. LUNGevity is working with our partners in the advocacy community to push for our funding priorities. A summary of current activities can be found below. 

Lung Cancer Research Program (LCRP) 

LUNGevity joins the lung cancer community in advocating for $60 million for the Lung Cancer Research Program (LCRP), which is part of the Congressionally Directed Medical Research Programs (CDMRP) at the Department of Defense. This amount would allow the LCRP to fund the majority of the highly rated grant proposals that it receives. Last year, LUNGevity Action Network hosted a webinar to provide information about the LCRP. Stay tuned for an action alert with an opportunity to write your members of Congress in support of this important program in FY 2024! 

National Institutes of Health (NIH)/ National Cancer Institute (NCI) 

LUNGevity is once again joining the broader cancer and medical research advocacy communities to push for robust funding increases for the National Institutes of Health (NIH) and specifically the National Cancer Institute (NCI). For NIH, we align with the Ad Hoc Group for Medical Research and nearly 400 organizations in asking Congress to provide at least $50.924 billion for the NIH in FY 2024, which would represent an increase of 5% plus the cost of biomedical research inflation. The letter outlining this request can be found here

For the NCI, LUNGevity joins the One Voice Against Cancer (OVAC) coalition and its more than 50 member organizations in supporting appropriations of $9.988 billion in FY 2024. This aligns with the NCI Director’s Professional Judgment Budget, which provides an ambitious vision for cancer research. 

Biomarker Legislation 

LUNGevity is supporting state legislation to increase access to biomarker testing in partnership with ACS CAN and other organizations. The legislation, which has been introduced in 17 states this year, would require both state Medicaid programs and commercial insurers regulated by the states to cover guideline-recommended biomarker testing for patients. LUNGevity signed on in support of the legislation in each state and activated the LUNGevity Action Network in states including Maryland and Georgia to engage our advocates.  


The Biden Administration announced earlier this year that May 11, 2023, will be the last day of the COVID-19 public health emergency (PHE) declaration. Several federal telehealth policy provisions have been linked to the PHE; however, most have either been permanently adopted or have been extended through the end of 2024 via the Consolidated Appropriations Act passed by Congress in December. For example, people with Medicare can still access telehealth services from home anywhere in the country. Certain types of telehealth visits can also take place via audio-only (telephone) communications. LUNGevity supports policies that would make these flexibilities permanent. More information on current policies and upcoming changes can be found on this page.

Most state-level public health emergencies have now expired, ending temporary waivers that made it possible for providers to see patients in other states via telehealth without needing a license from that state. Some states have taken steps to facilitate ongoing access to out-of-state providers, for example, by implementing a “registration” system that allows these providers to see patients in that state via telehealth without having to obtain a license. Some states are also considering exemptions to current policy that would allow providers to continue seeing a patient via telehealth if they have already established an in-person relationship with the patient or in temporary circumstances such as for students or people who are traveling. The Petrie-Flom Center at Harvard Law School recently hosted a very informative webinar series on telehealth policy that can be accessed here: Part 1Part 2Part 3.

One Voice Against Cancer (OVAC) Rally on March 6-7, 2023 

LUNGevity was proud to join over 50 cancer organizations to participate in the OVAC Grassroots Lobby Day in Washington, DC March 6-7. This annual event brought together nearly 90 advocates from across the country to meet with congressional offices and discuss the importance of funding for cancer research and prevention. Participants asked members of Congress to support the community asks for the NIH ($50.924 billion) and NCI ($9.988 billion). Additionally, OVAC advocates urged Congress to provide at least $472.4 million for cancer prevention and control programs at the Centers for Disease Control and Prevention and $1.5 billion for the Advanced Research Projects Agency for Health (ARPA-H). The latter is a new agency designed to accelerate research across many areas of health in a way that is complementary to the NIH.  

Rally for Medical Research on September 13-14, 2023 

Please mark Thursday, September 14, 2023, on your calendar as the “Rally for Medical Research Hill Day.” 

The Rally for Medical Research is 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). Visit the Rally for Medical Research website to learn more. 

This initiative is an opportunity for supporters from the 400 participating organizations to join together to speak with one voice about making NIH a national priority. 

LUNGevity is proud to be a partner for this initiative/event. We will send out more information via the Action Network when registration opens. 

LUNGevity’s HOPE Summit brings together lung cancer patients, survivors, and caregivers to learn how to live well with lung cancer and build their community of support! This unique weekend conference will be held on May 5-7, 2023, in Rockville, MD. 

The conference features inspirational speakers and key experts on practical issues of cancer survivorship. HOPE/COPE Summit is free to attend, and limited travel grants are available to first-time attendees. For returning attendees, the Survivor Challenge is a way to raise funds and cover your travel expenses.
Be sure to visit the LUNGevity Action Network team at the HOPE Summit 2023 Patient Resource Fair on Friday, May 5 from 1:00-5:00 PM ET! We are also planning a session on policy and advocacy – stay tuned to the HOPE Summit website for more details. 

“What to Expect from Washington in 2023” with Monica Popp – February 24, 2023 

A new Congress can bring changes to the political landscape and influence the prospects for our policy priorities. 

In February, LUNGevity’s Director of Government Affairs, Brandon Leonard, hosted a special webinar with policy strategist, Monica Popp, to discuss what health policy proposals and changes she thinks we can expect to see this year, especially those that could affect lung cancer patients. 

Monica is a founding partner of Marshall & Popp and is one of Washington’s top policy strategists with over 15 years of policy experience in the U.S. Senate and House of Representatives, U.S. Department of Health & Human Services, and the federal offices of former Governor Jeb Bush (R-FL). Monica specializes in health policy but has worked extensively on a wide range of bipartisan legislative accomplishments as a senior Republican aide. 


“Regulatory Policy 101” with the LUNGevity Policy Team – March 16, 2023 

The U.S. Food and Drug Administration (FDA) plays an important role in ensuring that the therapies patients depend on are safe and effective and that the tests used for patient screening, diagnosis, and monitoring are accurate. 

On March 16, LUNGevity’s regulatory policy team hosted an interactive webinar to give advocates insight into how the FDA regulates oncology products, oversees the conduct of clinical trials, and works with LUNGevity to improve outcomes for patients with lung cancer. 

This is the third webinar in our Policy 101 series. All LUNGevity Action Network webinars are available here. 

Meet Ed Cutler, a lung cancer survivor-advocate from Florida. 

Ed is a great example of how advocacy can happen at any time, in any place, from the offices on Capitol Hill to the sidelines of a softball game. He’s always willing to share his story in the hope that it might inspire or empower others to take action or get connected to a community of hope and support. 

Ed participated in the Rally for Medical Research, a two-day event that unites advocates across the country to urge policymakers to make life-saving medical research a national priority. LUNGevity is a proud partner of the Rally for Medical Research. 

Ed traveled to Washington, DC, with Moffitt Cancer Center, where he receives treatment. The advocacy team from Moffitt included cancer patients, researchers, oncologists, and additional staff. During the Rally, Ed attended meetings and special events, where he was able to talk with senators, representatives, and their staff to share his experiences as a lung cancer patient. 

Ed’s treatment journey has included chemotherapy, two clinical trials, and immunotherapy. He advocates for more awareness about lung cancer screening, dispelling the stigma around lung cancer, and more funding for life-saving research. 

“The Rally was all about coming with a common ask for $49B to go to NIH. It may sound like a lot of money, but it’s still a drop in the bucket for what’s really needed. Cancer research, especially lung cancer research, needs investment that matches the impact of the disease. The survivors who attend the Rally are good examples of what research dollars can do.” 

In addition to participating in multiple advocacy events and campaigns with Moffitt Cancer Center, Ed is also a member of the LUNGevity Action Network and a LifeLine Mentor. This was Ed’s first time advocating in person on Capitol Hill. He participated in the Rally virtually last year and he’s done virtual summits with other advocacy organizations over the years. 

Ed believes that anyone can be an effective advocate. His advice for other advocates is, “As long as you get the bullet points and know what it is that we’re asking for, just being personable and engaging in conversation can be very effective.”  

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.