Training, tools, and resources for lung cancer advocates to amplify their voice and their impact
LUNGevity Foundation 228 S. Wabash Avenue, Suite 700 Chicago, IL 60604
Main Website: www.lungevity.org
Advocating for an increase in federal funding for lung cancer research is a year-round, multipronged effort. Thanks to the collective and collaborative efforts of LUNGevity, lung cancer advocates, and other lung cancer advocacy organizations, we are driving progress and improving outcomes.
Federal funding for lung cancer research comes from the National Institutes of Health, the National Cancer Institute, and the Lung Cancer Research Program within the Congressionally Directed Medical Research Programs at the Department of Defense.
In fiscal year 2021, because of insufficient funding, the Lung Cancer Research Program was forced to reject 82 out of 119 research proposals rated excellent or outstanding by reviewers (70%). This represents 82 missed opportunities to advance novel, desperately needed technologies and treatments to fight America’s top cancer killer. A $60 million appropriation could have funded all of these high-quality proposals.
As members of the broad lung cancer community, LUNGevity and 55 other lung cancer organizations came together with a collective ask for $60 million dollars to fund the Lung Cancer Research Program. To make this ask a reality, we have been working nonstop to engage strategically with policymakers and other advocacy organizations and to educate, empower, and mobilize advocates through the LUNGevity Action Network.
To provide advocates with a better understanding of opportunities for lung cancer research funding, we hosted an educational webinar with policy experts, Mark Vieth, Coordinator of the Defense Health Research Consortium and Jill Morningstar, lung cancer caregiver, advocate, and former Capitol Hill staffer. You can view the webinar in the LUNGevity Action Network.
We followed the webinar with a series of Action Alerts, so that the lung cancer community could make their voices heard in a unified way and educate policymakers as to why this funding is so critical.
First, we encouraged members of the LUNGevity Action Network to send letters to their senators and representatives asking them to sign a Dear Colleague letter requesting $60 million for the Lung Cancer Research Program in the Fiscal Year (FY) 2023 Department of Defense appropriations bill. Over 500 advocates sent messages to their senators and representatives via the LUNGevity Action Network. Our collective advocacy resulted in more senators and representatives signing on.
In Novemeber we sent a follow up action alert through the LUNGevity Action Network, mobilizing members to send letters to their senators and representatives asking them to prioritize federal funding for lung cancer research as they complete appropriations for FY 2023. In addition to online advocacy and sign-on letters, we served as a partner for the Rally for Medical Research Hill Day, where a broad coalition of groups representing the medical research advocacy community met with the House and Senate offices in Washington, DC to urge members of Congress to make funding for the National Institutes of Health (NIH) a national priority. Our shared goal is to raise awareness about the importance of continued investment in medical research that leads to MORE PROGRESS, MORE HOPE and MORE LIVES SAVED.
As a member of One Voice Against Cancer (OVAC), LUNGevity has advocated for significant funding increases for the National Institutes of Health (NIH), the National Cancer Institute (NCI), and the Cancer Prevention and Control Programs at the Centers for Disease Control and Prevention (CDC) in fiscal year 2023. This included signing OVAC letters and participating in the OVAC Grassroots Lobby Day in May. LUNGevity also joined more than 370 organizations in signing a letter from the Ad Hoc Group for Medical Research urging Congress to provide a robust funding increase for the NIH in FY 2023.
On December 20, appropriations leaders in Congress released an “omnibus” bill that includes $25 million for the LCRP, an increase of $5 million. While this is less than the amount we had advocated for, it represents a significant boost considering the difficult funding choices that Congress had to make. This is an important first step toward more robust funding increases for the LCRP and a credit to the outstanding advocacy of everyone in the lung cancer community! The bill also includes significant funding increases for the NIH and NCI, as well as smaller increases for the CDC cancer programs. We will continue to push Congress to invest in lung cancer research, prevention, and early detection through these important programs.
Telehealth has become a valuable component of care for many patients, and while its usage spiked early in the COVID-19 pandemic, many states have returned to pre-pandemic restrictions on the use of telehealth. People living with cancer and many other diseases have made it clear that they want permanent access to telehealth options. Now, policymakers need to take action to ensure that these services are available and covered by all types of insurance.
LUNGevity is advocating for policies at both the state and federal level that will ensure continued access to telehealth. This summer, we worked with an outstanding group of summer associates at the law firm of WilmerHale to analyze key issues in telehealth policy, obtain a landscape of 2022 policy activities in the states and nationally, and identify opportunities for LUNGevity to engage going forward.
In September, we published a blog post providing more background on the value of telehealth for the lung cancer community and the current policy landscape. Earlier this month, we sent an action alert through the LUNGevity Action Network, providing an opportunity for advocates to write their legislators about the importance of permanent telehealth access. Congressional leaders included a two-year extension of Medicare telehealth flexibilities in the omnibus funding bill released on December 20. If enacted, this would be a significant win for patients and all those who have advocated for expanded telehealth access.
Looking ahead, LUNGevity plans to partner with other patient, provider, and telehealth organizations to advocate for policies that will make it easier for all patients to access the services they wish through telehealth. This will include advocating for legislation in individual states related to licensure as well as Medicaid and private insurance coverage, in addition to ongoing advocacy for permanent Medicare coverage of key telehealth provisions.
As targeted therapies for non-small cell lung cancer have changed treatment for non-small cell lung cancer, biomarker testing has become an increasingly important tool to identify the best treatment option for many patients. LUNGevity has been active in supporting legislation that will increase access to biomarker testing.
Earlier this year, Governor Inslee signed Washington’s ESHB 1689 into law. This bill exempts patients with late-stage cancers from prior authorization requirements for biomarker testing. This new law is effective January 1, 2023, and will eliminate delays for biomarker testing, making testing at diagnosis a reality for patients with late-stage cancers. This followed passage of a similar bill in California last year that LUNGevity also championed.
LUNGevity is also working with the American Cancer Society Cancer Action Network and over 30 other patient advocacy organizations to support state legislation guaranteeing access to biomarker testing for patients covered by Medicaid and state-regulated private plans. To date, this legislation has been passed in three states and introduced in nine others.
In 2022, LUNGevity has supported passage of several reforms that would improve the way that drugs and diagnostics are regulated by the FDA. One area of recent activity is the Accelerated Approval Program, which has been instrumental in bringing breakthrough lung cancer therapies to patients more efficiently. LUNGevity supports provisions that would clarify FDA’s authority to specify requirements for post-approval studies used to confirm clinical benefit prior to approving products; to expedite the withdrawal of accelerated approval for products when needed; and to enforce the completion of post-approval studies by sponsors. These provisions were included in the omnibus package released by congressional leaders on December 20 and are expected to pass.
LUNGevity has also supported the Verifying Accurate Leading-edge IVCT Development Act (VALID) Act, legislation that would allow the FDA to have greater oversight over laboratory developed tests (LDTs) and provide safeguards for patients who rely on these tests to guide their treatment decisions. At the same time, VALID offers flexibilities and creative new pathways for developers to continue updating existing tests as well as bring innovative new tests safely to patients. The VALID Act was not included in the omnibus package released on December 20. However, we will continue to urge that Congress and FDA take steps to improve oversight of these tests. Learn more in our statement on the LUNGevity Action Network.
LUNGevity is proud to support the Comprehensive Cancer Survivorship Act, which was introduced last week by Reps. Debbie Wasserman Schultz (D-FL), Brian Fitzpatrick (R-PA), and Mark DeSaulnier (D-CA), along with Sens. Amy Klobuchar (D-MN) and Ben Cardin (D-CA). This bill contains many provisions that seek to improve the quality, coordination, and coverage of care for survivors of cancer beginning at diagnosis. This will be one of our legislative priorities in the next session of Congress, where the bill will be reintroduced.
“From detection and diagnosis to treatment and long-term support, people living with cancer face numerous challenges in receiving the best possible care,” said Andrea Ferris, President and CEO of LUNGevity Foundation. “We applaud Reps. Wasserman Schultz, Fitzpatrick and DeSaulnier, as well as Sens. Klobuchar and Cardin, for leading this comprehensive legislation that would take meaningful steps toward improving the way that cancer care is coordinated, delivered, and covered. We look forward to working with these congressional champions and our partners in the cancer advocacy community to ensure that these important measures are enacted.”
To learn more about the Comprehensive Cancer Survivorship Act, read the full news release from Rep. Wasserman Schultz.
Understanding how public policy affects the lung cancer community can help make you a more informed, empowered advocate and strengthen our collective efforts.
To help provide you with a solid foundation of how advocacy can help create change at the local, state, and national level, we launched a “Policy 101” webinar series.
The webinar series covers important issues and key players in public policy, how LUNGevity is making positive strides in breaking down barriers to patient access to high-quality care and treatment innovation, and how advocates can effectively engage with policymakers and regulators.
Check out the first two webinars in the series:
• Policy 101
• Legislative Policy 101
And keep an eye on your inbox for details about the next webinar - Regulatory Policy 101 – in early 2023!
In addition to continuing our Policy 101 series, we are planning several other informative webinars for the LAN in the coming year. These will include a congressional update highlighting changes in leadership for the next Congress and what to expect in lung cancer priorities. We are also planning a webinar to discuss copay accumulator and maximizer policies that are negatively impacting patient out-of-pocket costs for prescription drugs.
Keep an eye on your inbox for more information and details in early 2023!
Meet Lia, a lung cancer survivor-advocate from Virginia.
This year, Lia served as a consumer reviewer for the Lung Cancer Research Program (LCRP) through the Department of Defense. Consumer reviewers evaluate applications submitted to the LCRP and provide the patient perspective. Lia says, “I wanted to somehow give back to the lung cancer community and do my part in making our voices heard. I also wanted to help others learn through my cancer experience.”
Through her advocacy, Lia hopes to raise awareness for lung cancer and the need for more funding and research. She also wants to support other survivors as they navigate treatment and adjust to living with lung cancer. Lia has served as a LUNGevity LifeLine Mentor and she is a member of the LUNGevity Action Network. She is a peer support mentor and she participates in advocacy summits with multiple cancer organizations.
In July, Lia was a panelist on The FDA Oncology Center of Excellence (OCE) Conversations on Cancer public panel discussion series about clinical trial site selection in the context of declining U.S. patient enrollment, geo-political turmoil, and our commitment to equity and diversity in clinical trials.
Lia has also 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.
Lia’s advice for other advocates is, “It’s up to you to decide how you would like to be involved and there are many opportunities for advocacy. You can commit as little or as much time as you would like, and you shouldn’t be intimidated. Being a lung cancer survivor is the only qualification you need.”
There are a number of other policy issues that LUNGevity is following closely as we head into 2023. Here are some additional topics that will be priorities.
Many patients rely on copay assistance from manufacturers or charitable organizations to afford the cost of their prescription medicines. However, insurers and pharmacy benefit managers (PBMs) have increasingly used policies known as copay accumulators and copay maximizers that allow the plan to collect these funds without counting them toward the patient’s annual deductible or total out-of-pocket costs. As a result, many patients have been surprised to find out that they may still have to pay thousands of dollars for their prescriptions despite receiving copay assistance. LUNGevity is working with the All Copays Count Coalition to support legislation that requires insurers to count copay assistance toward patient cost-sharing limits. Most recently, LUNGevity supported such legislation in Delaware, which became the fifteenth state to ban copay accumulator programs. We will be advocating for this legislation in other states – and in Congress – in 2023.
In September, a U.S. district court in Texas issued a ruling that challenges the requirement for certain preventive services to be covered under the Affordable Care Act. As it currently stands, the ruling could endanger coverage for low-dose computed tomography (LDCT) in lung cancer screening, as well as other services recommended by the U.S. Preventive Services Task Force (USPSTF). LUNGevity will be following this issue closely to determine steps that can be taken to protect patient access to screening.
Join our network of lung cancer advocates to stay in the know about current legislative issues and advocacy actions.