Health policy

At GO2 for Lung Cancer, helping patients and families is at the heart of what we do. Our support services connect people to trusted information, help them navigate care, and offer guidance during difficult moments.

At the same time, GO2 also works behind the scenes on health policy. This work focuses on the laws and decisions that shape whether people can get screened, see the right specialists, afford treatment, and receive follow-up care. Together, direct support and policy advocacy help ensure that people affected by lung cancer can get the care they need when they need it.

Expanding access to lung cancer screening

Early detection saves lives. That’s why expanding access to lung cancer screening is one of GO2’s top priorities.

Rules about who qualifies for lung cancer screening can make a big difference. These guidelines decide who is eligible for low-dose computed tomography (LDCT) scans and whether insurance covers the cost. When screening rules are too narrow or outdated, some people who are still at high risk may not be able to get screened.

GO2 is closely engaged as national screening recommendations come up for review. These reviews are important opportunities to update guidelines based on new research and real-world experience. Today, some individuals—such as certain people with a smoking history—may still face a higher risk of lung cancer but do not meet current screening criteria.

GO2 also works to ensure that Medicare coverage keeps pace with updated screening guidance. This is especially important for older adults who are more likely to develop lung cancer. When coverage rules do not match current medical guidance, people may face delays or barriers to screening that could help detect cancer earlier.

Through ongoing advocacy, GO2 works to ensure that lung cancer screening guidelines and coverage policies reflect current real-world evidence and updated clinical guidelines, so more people who could benefit from screening are able to access it.

Ensuring access to timely diagnosis and biomarker testing

Screening is only the first step in the lung cancer care experience. When a suspicious finding appears on a scan, patients need timely diagnostic evaluation and testing to determine the best path forward.

An important part of this process is biomarker testing, which analyzes a tumor’s genetic features to help doctors identify treatments that may work best for a specific patient. Many modern lung cancer treatments depend on these results, making timely access to testing critical for guiding treatment decisions.

GO2 works to improve access to biomarker testing through both policy and system-level efforts. This includes supporting state legislation that helps ensure insurance coverage for biomarker testing and advocating for its inclusion in state cancer plans and other cancer control initiatives.

By advancing policies and best practices that support timely and appropriate testing, GO2 helps provide patients and their care teams with the information they need to choose the most effective treatment options.

GO2 also works with national partners and policymakers to advance policies that support appropriate biomarker testing and ensure that patients across the country can benefit from the latest advances in precision medicine.

Supporting access throughout the care journey

Access challenges don’t stop after screening. Many policies affect care at every stage from diagnosis and treatment to follow-up and survivorship. GO2 works to ensure these policies support patients rather than create new obstacles.

One important tool is telehealth. Telehealth allows patients to talk with healthcare providers by phone or video, making it easier to have screening conversations, meet with specialists, manage care, and check in after treatment. For people who live far from cancer centers, have trouble traveling, or juggle work and family responsibilities, telehealth can make care more reachable.

As healthcare rules continue to change, GO2 advocates for telehealth policies that are practical, fair, and patient-friendly. The goal is to make sure virtual care remains an option, especially when it helps patients stay connected to the care they need.

Making sure the patient voice is heard

GO2 also works with other patient advocacy organizations to strengthen the patient voice in health policy discussions. By working together, patient groups can raise shared concerns and help decision-makers understand how policies affect real people.

This teamwork helps ensure that lung cancer needs are considered in broader healthcare decisions especially when policies are designed for many conditions at once but may affect cancer patients in unique ways.

Improving affordability of lung cancer treatment

The cost of treatment is a major concern for many people facing lung cancer. GO2 closely follows changes to Medicare drug coverage and pricing rules that affect how much patients pay for their medications.

Recent changes to federal law are reshaping how prescription drug costs are handled under Medicare. GO2’s policy work focuses on making sure these changes truly help patients afford their medications without limiting access to the treatments their doctors recommend.

By monitoring how new rules are put into practice, GO2 works to identify and address any unintended consequences that could make it harder for patients to get the care they need.

Addressing insurance barriers when they arise

Sometimes, even when guidelines and policies are in place, insurance coverage decisions can still create problems for patients. When this happens, GO2 speaks up.

GO2 engages directly with health plans when coverage rules or restrictions limit access to needed cancer treatments, especially for people with rare or specific types of lung cancer. These efforts focus on ensuring that coverage decisions keep pace with medical advances and recognize that different patients need different treatments.

This kind of targeted advocacy helps reinforce a simple but important message: cancer care should be guided by medical evidence and individual patient needs—not one-size-fits-all rules.

One goal: Helping patients get the care they need

Whether providing direct support to patients, advocating for expanded screening, protecting access to care tools like telehealth, working to improve affordability, or addressing insurance barriers, GO2’s work is guided by one goal: helping people affected by lung cancer access timely, high-quality care.

Some of this work happens behind the scenes, but its impact is felt every day. GO2 remains committed to supporting patients and families—both through direct services and through advocacy that helps make the healthcare system work better for everyone affected by lung cancer. Learn more about our advocacy work.

Lung Cancer Voices Summit Calls on Congress: Support Research. Save Lives.

Washington, D.C. — February 25, 2026 — On March 3, GO2 for Lung Cancer (GO2) will convene more than 200 people impacted by lung cancer on Capitol Hill for its annual Lung Cancer Voices Summit, elevating patient voices and urging Congress to take immediate action to address the nation’s leading cause of cancer death. With more than 230,000 Americans expected to be diagnosed with lung cancer this year, advocates are calling for increased federal investment in research that saves lives.

Participants include people living with lung cancer, survivors, caregivers, veterans, and families, alongside clinicians, researchers, and healthcare experts. GO2 is joined by partners from across the lung cancer community—including biomarker groups, research foundations, advocacy organizations, and patient-led initiatives—representing the full spectrum of expertise and lived experience. United around a shared mission, this community is meeting with lawmakers to advocate for $60 million in dedicated funding for the Lung Cancer Research Program (LCRP) in the FY 2027 federal budget and to deliver a clear message: sustained investment in lung cancer research, awareness, and support saves lives.

“People’s lives are at stake, and we need funding and support now,” said GO2 for Lung Cancer’s Co-Interim Chief Executive Officer Danielle Hicks. “We see firsthand the consequences of underinvestment. Lung cancer remains the single largest cancer killer in the United States, yet it continues to receive disproportionately low levels of federal research funding. That must change.”

Keynote speaker Christine M. Lovly, MD, PhD, FASCO, division chief of thoracic medical oncology, professor in the Department of Medical Oncology & Therapeutics Research at City of Hope, one of the largest and most advanced cancer research and treatment organizations in the United States, emphasized both the scientific urgency of sustained funding and the strength of collective advocacy.

“We are at a pivotal moment in lung cancer research and patient care,” said Dr. Lovly. “Scientific advancements are transforming how we understand and treat this disease, but progress is slowed by persistent barriers, including both insufficient funding for research and unequal patient access to the innovations that arise from our nation’s research efforts. Sustained investment in lung cancer research is essential to accelerate breakthroughs and ensure patients benefit from discoveries as quickly as possible. When the lung cancer community comes together, we create the momentum needed to drive real change.”

Despite lung cancer’s status as the leading cause of cancer-related death, federal investment in research remains inconsistent and vulnerable to shifting budget priorities. Recent funding negotiations have created uncertainty for medical research programs nationwide.  

For Fiscal Year (FY) 2027, the lung cancer community is united in calling on Congress to fully restore and increase funding for the Lung Cancer Research Program (LCRP) to $60 million within the Congressionally Directed Medical Research Program (CDMRP) at the Department of Defense. This investment is essential to reverse the harmful impact of the FY 2025 Full-Year Continuing Resolution, which:

• Enacted a 57 percent reduction to overall CDMRP funding; and

• Eliminated dedicated funding for the LCRP in FY 2025.

Without restored and sustained investment, promising research may stall, innovation may slow, and patients could face delays in accessing lifesaving breakthroughs.

Reflecting on the unified voice of the summit, Dr. Lovly added, “The best testament to the value of getting this right is more family, friends, neighbors, and loved ones who are living longer with a better quality of life. Together, the lung cancer community can create better treatments and more opportunities.”

“Patients cannot wait,” Hicks said. “Every delay in funding means delayed progress, delayed treatments, and lives lost. Congress has an opportunity, and a responsibility, to act.”

Today marks a huge step for improving the lives of everyone affected by lung cancer. S. 1157, the Women and Lung Cancer Research and Preventive Services Act, advances with a favorable vote in the Senate Health, Education, Labor, and Pensions (HELP) Committee, building on the progress of its companion bill in the House, H.R. 2316, which passed last spring. This marks a critical step toward improving outcomes for women and families affected by lung cancer. We thank Committee Chair Bill Cassidy (R-LA), Ranking Member Bernie Sanders (I-VT), and bill sponsors Senators Tina Smith (D-MN) and Shelley Moore Capito (R-WV), along with House sponsors Representatives Brendan Boyle (D-PA) and Brian Fitzpatrick (R-PA), for their strong bipartisan leadership in advancing this critical legislation.

With the bill now reported out of the committee of jurisdiction, Congress must act swiftly by bringing it to a vote in both chambers and passing it into law this year. Join us—urge your members of Congress to vote now to pass the Women and Lung Cancer Research and Preventive Services Act of 2025.

For more information, please contact GO2 for Lung Cancer’s Senior Director, Government Affairs & Public Policy, Elridge Proctor, MPA (eproctor@go2.org).

By Elridge D. Proctor, MPA, Senior Director, Government Affairs, GO2 for Lung Cancer

Current landscape

As we enter 2026, we reflect on the impact that government decisions are having on communities across the nation, especially our own, as lung cancer continues to change lives forever. Many of you are coping with fear and anxiety of uncertainty while you wait for things to change, and some of you may be grieving from losing someone far too soon. We want you to know that we are with you, and that GO2 is your friend.

Whether you are newly diagnosed or years into survivorship, our strength comes from standing together. We invite you to read this 2025 advocacy recap to recharge and enter this new year with purpose and renewed energy.

Lung Cancer Voices Summit

We are pleased to share that the 2026 Lung Cancer Voices Summit will be held in partnership with organizations and advocates across the full spectrum of the lung cancer community. Together, we will deliver a clear message to Congress that continued investment in lung cancer research, awareness, and support saves lives.

Register now through January 23, 2026, to make your voice heard. The Fundraising Challenge is available to help everyone make it to the Summit. Register today.

Thank you to everyone who contributed to making this year’s summit an inspiring movement.

• Meet the Planning Advisory Committee—the Heart of the Voices Summit.

• View our 2025 Voices Summit photos for a glimpse of what to expect in 2026.

Engage early in the new year

January is the perfect time to schedule meetings in your elected officials’ local offices or to attend events where they will be present. These conversations are crucial in showing why lung cancer research must remain a national priority. Your voice is powerful. Tell elected officials that continued investment matters and delivers meaningful, wide-ranging benefits for public health and our communities.

Advocacy tools to support your efforts

GO2 is pleased to provide our lung cancer advocacy toolkit, designed for both digital and print use. This toolkit will support your advocacy year-round and will continue to be updated ahead of next year’s Summit. Inside you will find:

• 5 steps for in-person meetings

• Tips for public speaking

• Common legislative and advocacy terms

• Overview of the legislative process

Legislative update

Fiscal Year (FY) 2026 Appropriations summary

Following the end of the longest government shutdown in U.S. history—43 days—the budget agreement now extends through January 30, 2026. Once again, final action is required on 9 of the 12 federal appropriations bills.  

As we prepare for Congress to act on concurrent budgets next year, we will continue advocating together to turn these challenges into meaningful action for our community.

Here is a recap on where the budget stands. In July 2025, the Senate Appropriations Committee approved its FY 2026 Department of Defense and Labor, Health and Human Services, and Education (LHHS) bills with modest increases for the following agencies:

• $48.7B for the National Institutes of Health (NIH): a $400M increase

• $7.374B for the National Cancer Institute (NCI): a $150M increase

• $1.5B for the Advanced Research Projects Agency for Health (ARPA-H): level-funded

GO2 will continue its advocacy to request the highest possible funding levels for our research agencies in FY 2026 appropriations.

The Lung Cancer Research Program (LCRP)

The Senate did not designate specific funding for the LCRP, keeping lung cancer within the Peer-Reviewed Cancer Research Program, where 24 cancers compete for a total of $130M.

The House passed the defense appropriations bill, which preserved the LCRP as a stand-alone line item but funded it at $15M, significantly lower than the $25M enacted last year. The House also funded the overall CDMRP at $700M, a steep drop from the $1.5B provided in FY 2024.

In response, GO2 issued a statement to appropriation committee leaders, urging them to increase Congressionally Directed Medical Research Programs (CDMRP) funding and to specifically allocate $60M for the LCRP in FY 2026.

GO2 will continue working collaboratively with the Defense Health Research Consortium to protect and restore medical research programs within the Department of Defense (DoD). This includes supporting the Medical Research for Our Troops Act (H.R. 3906) to fully restore CDMRP funding after it was cut by 57% in FY 2025 continuing appropriations law.

Reconciliation Tax Bill (H.R. 1): Impact on Medicaid and lung cancer

This summer marked the end of a long reconciliation process when President Trump signed the “One Big Beautiful Bill Act” (H.R. 1) into law. Read GO2’s statement on the One Big Beautiful Bill Act.

Summary of the expected impact on lung cancer

• More than 11 million Americans could lose coverage—including thousands living with or at risk for lung cancer, and those affected by new work requirements and related policy changes.

• Capped payments to hospitals and nursing homes are expected to hit rural and safety-net providers hardest.

• Cuts threaten access to screening, diagnosis, treatment, and survivorship services—leading to later diagnoses and lower survival rates.

• Reduced Medicaid funding is likely to increase long-term healthcare costs and late-stage cancer cases.

• Disparities in lung cancer outcomes may widen, especially in low-income and rural communities.

GO2 has joined with the disability community and advocacy organizations in urging Congress to pass the Protecting Healthcare and Lowering Costs Act of 2025 and similar legislation to repeal the entirety of the health provisions in H.R. 1 and permanently extend the advanced premium tax credits covered in the Affordable Care Act.  

If you would like to share your Medicaid story or become involved in advocacy around these changes, please send an email to Elridge D. Proctor, MPA, Senior Director, Government Affairs at policy@go2.org.

The Women and Lung Cancer Research and Preventive Services Act of 2025 (H.R. 2319 / S.1157)

The Women and Lung Cancer Act, H.R. 2319, was advanced by the House Energy and Commerce Committee in May 2025. Building on the momentum from the previous Congress when the House passed this bill. We call on advocates to urge the Senate to advance S.1157 so the bill can be passed into law next year.

Multi-Cancer Early Detection (MCED) Screening Coverage Act

The MCED Coverage Act (H.R. 842 / S. 339) reached 2 major milestones this year:

1. The bill was advanced by both the House Ways and Means Committee and the Energy and Commerce Health Subcommittee.
2. The bill achieved a combined 400 cosponsors, making it the most co-sponsored bill of this first session of the 119th Congress.  

With this resounding support, let’s continue our advocacy to see this bill enacted in 2026.

Legislation endorsed by GO2

• The Mobile Cancer Screening Act, which will enhance access to cancer screening services for underserved and rural communities across the United States. In our view, all individuals, regardless of their geographic location or socioeconomic status, can benefit from early detection and intervention to not only save lives but also reduce healthcare costs associated with late-stage cancer treatments.

• The Increasing Access to Lung Cancer Screening Act aimed at expanding access to low-dose CT scans for high-risk individuals. If passed, the bill would:  

• • Ensure that everyone currently recommended for lung cancer screening has access with no cost-sharing or prior authorization, regardless of their insurance type.
  • Fund a nationwide awareness campaign about lung cancer and screening.
  • Authorize a study to better understand populations that are at high risk of lung cancer and not included in current screening guidelines.
  • Expand coverage for tobacco cessation services in Medicaid.

• The Creating Opportunities Now for Necessary and Effective Care Technologies (CONNECT) for Health Act (H.R. 4206), which is the most comprehensive legislation to make telehealth access and flexibilities permanent. The bill permanently extends the major Medicare telehealth flexibilities created during the COVID-19 pandemic, removes outdated geographic and originating-site restrictions, expands the types of providers and clinics that can deliver and bill for telehealth, and supports a full range of technologies, including audio-only options—to ensure equitable access. It also aims to modernize and secure long-term telehealth access for patients nationwide.

• The States Handling Access to Reciprocity for Employment (SHARE) Act of 2025, which will provide the framework necessary to modernize licensure alignment and expand access to care across state lines. The need for licensure compacts as a tool to address healthcare workforce shortages and streamline the licensure process for our nation’s healthcare providers.  

Enacting comprehensive biomarker testing coverage

Far too many insurance plans still fail to cover guideline-recommended biomarker testing for people diagnosed with lung cancer and other serious illnesses. This leaves many patients to pay out-of-pocket costs or miss treatments that could significantly improve their outcomes.

GO2 continues its partnership with the American Cancer Society Action Network (ACS-CAN) on state-level campaigns to enact biomarker testing coverage laws. Thus far, 22 states have enacted laws to date. Looking ahead to 2026, we anticipate a challenging climate due to state budget pressures stemming from cuts in SNAP and Medicaid; however, the campaigns will continue in the following states: Delaware, Maine, New Hampshire, North Carolina, Ohio, Tennessee, Vermont, Washington, and, newly, Mississippi.  

At the federal level, GO2 endorsed 2 bills introduced in late November by Rep. Josh Gottheimer (D-NJ):

• One bill allowing Medicaid coverage of biomarker testing for lung cancer when medically necessary.

• Another expanding Medicare coverage of biomarker testing for lung cancer, regardless of stage or prior testing.

To get involved in the campaign or share your biomarker stories in advocacy, please email policy@go2.org.

Staying involved in advocacy

Your voices have a meaningful impact—especially in response to proposed cuts to cancer research. Our blog, As Time Is Ticking, Our Government Could Be Returning to Funding Levels from Decades Ago, captured and relayed the urgency felt across our community.

Because of your advocacy efforts:  

• Over 5,200 messages were sent to Congress urging restoration of lung cancer research funding.

• Advocates in 49 states participated—let us bring Mississippi into the fold in 2026.

Stay engaged by registering for the Voices Summit and taking action. Please visit our website to read policy letters and learn the positions that GO2 is taking in response to other issues and regulatory actions that could impact the lung cancer community.

Thank you for contributing to our 2025 advocacy impact—and for being a steadfast source of strength and hope in this community.

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Eva L. has what she calls an “all-American job.” She’s a teacher, a mother, a wife, a sister, a cousin, a daughter, and a neighbor who leaves for work every morning at 7:15 a.m. She is also someone living with lung cancer, a diagnosis that has reshaped her life and sparked her path into advocacy.

Two diagnoses, two realities

Eva’s path with cancer has been uniquely challenging. Within a short span of time, she was diagnosed with both breast cancer and lung cancer. “Any cancer diagnosis is a shock and alters your life,” Eva says. “With breast cancer, it was scary, but I knew there was a defined pathway and most people survive. I saw myself represented in the community. I didn’t feel diminished as a woman, or that I had brought it on myself.” Lung cancer, however, was a completely different experience. Instead of empathy, she was often met with suspicion. “Friends, coworkers, strangers, doctors, and even X-ray techs asked me if I smoked. The weight of the stigma felt as overwhelming as the diagnosis itself. This is the only cancer that is blamed on the patient.” For Eva, that stigma cut deep, not just in how others perceived her, but in how she had to challenge her own internalized biases. “I had to face my own stigma as I met other people with lung cancer, as those thoughts ran through my own mind. Our community perpetuates stigma through public service announcements, movie storylines, and cultural assumptions,” she said.

The stigma gap: breast cancer vs. lung cancer

The contrast between her experiences with breast cancer and lung cancer has been stark. “With breast cancer, no one questioned my personal behaviors. With lung cancer, even medical professionals didn’t believe me when I said I never smoked. Strangers asked, as if they were diagnosing me with a moral failure.” Eva is quick to point out the harm in these assumptions. “Smoking is not a moral failure. It’s a product sold to millions through lies about its health consequences. But the stigma lingers, and it impacts funding, research, and the way patients are treated.”

From classroom advocacy to cancer advocacy

Advocacy is not new to Eva. As the mother of a son with autism, she spent years navigating the education system to ensure he received the support he needed. “I learned to advocate for him and for the kids who came after him. It was exhausting but necessary,” she says. “That experience taught me that no one should have to be an ‘insider’ to get the support they need.” Now, she’s bringing those skills to lung cancer advocacy. “If stigma means less funding, then I need to participate in breaking it down. While I feel strong enough, I want to use my voice where and how I can.”

Finding her place

Eva’s entry into advocacy began with workshops through the Oregon Cancer Foundation and The White Ribbon Project. She realized that keeping her story private only reinforced the stigma. “Many women diagnosed with breast cancer just a decade ago reported similar experiences—friends and neighbors avoided them,” she said. “But that changed because survivors spoke up, advocated, and worked together to shift the narrative. I realize now I must do the same.” Part of that experience will take her to Washington, D.C. in 2026 for her first-ever Lung Cancer Voices Summit that GO2 has held annually for the past 19 years. “I look forward to learning how to add my voice to the movement others have been building for years. This will be a launching pad for me and the start of learning how to advocate at a regional and national level.”

Humor and humanity

Humor has also been one of Eva’s tools for resilience. From joking about “coffin lights” during a PET scan to wearing her favorite shirt that reads, “Cancer, 1 star out of 4, do not recommend,” she uses humor as a way to start conversations.“By starting with humor, people actually talk to me about lung cancer. That’s how we break down stigma—by talking, connecting, and reminding people that anyone with lungs can get lung cancer.”

Looking ahead

As we recognize Lung Cancer Awareness Month this November, Eva hopes more people will join her in challenging stigma, supporting research, and amplifying awareness that anyone with lungs can get lung cancer. Eva knows she has much to learn about advocacy, but her experience as a teacher and advocate for her son gives her confidence. “If my voice helps one person understand that anyone with lungs can get lung cancer, that’s a win. That’s how movements shift.” As she prepares for her first Voices Summit, Eva is stepping fully into her role as a lung cancer advocate—an all-American teacher using her voice to change the narrative, increase federal research funding, and help build a stronger, more supportive community for people at risk for and living with lung cancer.

It’s heartbreaking that our elected leaders can’t find common ground on something as important as the health and well-being of the cancer community. A government shutdown once again puts vital lung cancer research and access to care at risk. This is research that offers real hope for earlier detection, better treatments, and cures. When progress is delayed, it’s patients and families who pay the price. But we also know the strength of our lung cancer community. We stand together, and we won’t let setbacks silence us. We will keep advocating for restored and increased funding for a dedicated pipeline for lung cancer research. Together, we will keep our voices strong because this is about more than funding. This is about saving lives, improving quality of life, and moving closer to the cures we all urgently need and deserve.

Behind every successful Lung Cancer Voices Summit is a group of passionate advocates who make it all happen. The Voices Summit planning committee brings together survivors, caregivers, and champions in various regions who share one goal: to amplify the voices of the lung cancer community on Capitol Hill. Meet the powerhouse team helping to shape next year’s Summit, and the words that inspire them to keep pushing forward.

Sydney Barned

Dr. Sydney Barned is an internal medicine physician who was diagnosed with stage 4 (IV) ALK-positive non-small cell lung cancer at age 33, despite having no known risk factors. After delays and misdiagnoses, including walking pneumonia, she began targeted therapy and is now a long-term survivor. Her dual perspective as both doctor and patient fuels her advocacy, where she educates on biomarker testing and challenges stigma. In 2025, she received GO2’s Advocacy Leadership Award for Excellence in Community Engagement & Awareness for her leadership and impact. “Many extraordinary things were done by ordinary people who persevered. Just persevere.” – Sydney’s life motto

Sven de Jong

Sven de Jong was a devoted caregiver and is an advocate whose wife, Elizabeth, was diagnosed with stage 4 (IV) ALK-positive lung cancer in 2016. As her primary support, he provided care, comfort, and unwavering strength throughout her treatment. After her passing, he continues their shared mission by raising awareness and advocating for increased federal funding for lung cancer research, bringing visibility to the cause through storytelling and policy engagement. Elizabeth was honored with GO2’s 2022 Voices Summit Advocacy Leadership Award, and in 2023, Sven received GO2’s Wind Beneath My Wings Caregiver Award for his dedication. "It is during our darkest moments that we must focus to see the light." – Aristotle

Michael Gieske

Dr. Michael Gieske has dedicated his career to helping find lung cancer earlier, when it’s most treatable. After many years as a family doctor, he now leads the lung cancer screening program at St. Elizabeth Healthcare. Under his leadership, the program has helped detect hundreds of cancers at an early stage, giving more people the chance for better outcomes and longer lives. He is passionate about raising awareness that screenings are simple, effective, and can truly save lives. "You never know the day before is the day before." – Bobby Akart

Nikki Hirsch

Nikki Hirsch is an ALK-positive lung cancer survivor and advocate. Diagnosed in 2020, she turned her experience into action by organizing a sold-out trivia night that raised over $6,000 for ALK-positive research. Each year, she advocates in Washington, D.C., representing Florida, and she leads Single Alkies, a Healing and Arts group within ALK Positive for people navigating lung cancer without a spouse or caregiver. Nikki is dedicated to raising awareness, reducing stigma, and empowering others while pushing for increased research funding and support. “Dance like no one is watching. Sing like no one is listening. And live every day as a gift.” – Unknown 

Tiffini Joseph

Tiffini Joseph is a Pediatric Cardiac ICU nurse whose mother was diagnosed with stage 4 (IV) lung cancer in 2008 and passed away in 2010. As both caregiver and family advocate, she worked closely with the medical team to shape her mother’s care plan. Since then, Tiffini has devoted herself to raising awareness and supporting others affected by lung cancer, ensuring their voices are heard and their needs are met. "Try to be a RAINBOW in someone else's cloud." – Maya Angelou

Heidi Nafman-Onda

Heidi Nafman-Onda is a stage 3A (IIIA) lung cancer survivor, diagnosed in 2018 without symptoms and with no detectable biomarkers. A lifelong health enthusiast and fitness trainer, she co-founded The White Ribbon Project with her husband Pierre Onda, MD, MPH, to raise awareness and reduce stigma around lung cancer. Through this initiative, Heidi has shipped thousands of white wooden ribbons worldwide, fostering a supportive community and advocating for increased research funding and early detection. In 2023, she received GO2’s Voices Summit Advocacy Leadership Award in recognition of her impact. "Let everything happen to you: beauty and terror. Just keep going. No feeling is final." – Rainer Maria Rilke

Lia Ridout

Lia Ridout is a stage 3B (IIIB) ALK+ non-small cell lung cancer survivor, diagnosed in 2017 at age 49. With no known risk factors, her experience inspired her to become a passionate advocate. She works to raise awareness, promote biomarker testing, and ensure that the patient voice is heard in research and treatment, helping to improve outcomes and bring hope to others affected by lung cancer. “He who has a why to live for can bear almost any how.” – Viktor Frankl

Colette Smith

Colette Smith is a lung cancer survivor and advocate. Diagnosed with stage 1A (IA) non-small cell lung cancer in 2015, she underwent a lobectomy and has been cancer-free since. Motivated by her journey, Colette actively participates in many advocacy efforts to raise awareness about and support for lung cancer research and public health funding. Her mission is to empower others and promote early detection. “There is power and profound healing in telling our stories out loud AND in our own voices.” – Colette

Colleen Ziegler

Colleen Conner Ziegler is a stage 4 (IV) ALK-positive lung cancer survivor, diagnosed in 2015 at age 58. She brings her personal experience and perspective to GO2 for Lung Cancer as a member of its Voices Summit Planning Committee. Colleen uses her voice to support patients and caregivers, advocate for research, and raise awareness about lung cancer, showing that survivorship and advocacy can go hand in hand. “You must be the change you wish to see in the world." – Mahatma Gandhi

Jill D. and her husband, Paul, live in Sycamore, IL with their beloved dog, Wrigley. Their 2 adult daughters live an hour away in Chicago. Jill works part time in the accounting department of her church. She loves to read, watch the Chicago Cubs, travel, and cheer on Team DeHaven as they run to raise funds for lung cancer research. 

An unexpected diagnosis

In early 2021, after catching COVID-19, Jill noticed that she wasn’t bouncing back. Chest pain sent her to the emergency room, where a CT scan revealed something far more serious than lingering virus symptoms: a tumor in her right lung. “When I first went to the ER, I thought it was my heart,” she recalls. “My father had a heart attack when he was young, so that seemed like a more likely possibility for me. But they did a scan, and based on that, the doctor said he thought I had cancer.” A biopsy the next day confirmed it. Soon after, she learned the cancer had spread to her spine and neck. “I couldn’t wrap my head around that fact that I could have lung cancer. I hadn’t smoked, so lung cancer was absolutely not on my radar.”

Finding answers in ALK

Still reeling from the stage 4 (IV) diagnosis, Jill’s care team sent her biopsy for biomarker testing. A few days later, her oncologist called in the evening, this time with something like excitement in his voice. Jill’s lung cancer had the ALK-positive mutation. “At the time I didn’t know what that meant, but I knew he was very happy about it,” Jill says. “He said, ‘If you have to have lung cancer, this is the one to have.’” Jill started on a targeted therapy called Alecensa (alectinib). Within 3 months, scans showed a lot of improvement: her tumors had shrunk or disappeared. But the drug came with side effects. “It gave me severe fatigue,” she says. “Nights were completely off for me. I was in bed by 6 or 6:30 p.m.”

Progression and a new plan

In June 2024, after more than 2 years on alectinib, Jill’s scan showed progression. The original tumor was growing again, and new tumors had appeared. Repeat biomarker testing confirmed that the cancer was still ALK-positive, and her oncologist started her on Lorbrena (lorlatinib), another targeted therapy. Again, Jill noticed a quick turnaround. “I started feeling better pretty quickly,” she says. “But lorlatinib comes with its own issues—my cholesterol and blood sugar almost immediately shot up.” Still, the tradeoff was worth it. At her most recent scan, Jill’s oncologist told her something she didn’t expect: her cancer was in remission. “My husband and I just sat there in stunned silence,” Jill says. “I didn’t know this was even possible for me.”

Support at every step

Jill credits much of her emotional resilience through her diagnosis and treatment to the support she’s received from her family, community, and health care team. “My faith has been huge for me,” she says. “From the very beginning, my church family was right there, bringing us meals, praying, just holding us up.” Jill also worked with a therapist for the first 2 years of her diagnosis, and she has had a palliative care nurse by her side since the beginning. “I call her my medical therapist,” Jill says. “She helps explain things to me and helps manage my pain and anxiety.” A referral to an oncology psychiatrist helped her better cope with the emotional toll of treatment, too. “All of these people have helped me to live a much better life with this disease.”

Family, advocacy, and finding her voice

While Jill found strength in her community, her family found it by hitting the pavement—literally. Her husband and daughters, all runners, turned to fundraising through races as a way to process their grief and channel it into action. “It helped them emotionally,” Jill says. “It made them feel like they were doing something to help fight this.” Her own advocacy journey also began through those races when she met people who work with and for organizations that support lung cancer. “I didn’t know anyone with lung cancer before that,” Jill says. “When I found GO2 for Lung Cancer, I just started reading everything I could on the website. That’s where I learned about the Lung Cancer Voices Summit, and when I attended, it was the first time I’d ever walked into a room full of people with lung cancer. I just sat there in awe.” The experience changed her. Despite being an introvert, Jill enjoyed GO2’s advocacy day on Capitol Hill and felt empowered by sharing her story with legislators. “It was completely out of character for me,” she says, laughing. “To say, ‘This is serious, and you need to listen’, that was something I never thought I could do, but I am just so glad that I did. It was a very powerful experience.”

Hope, healing, and the power of storytelling

Jill knows she’s lucky to be able to be treated at a world-class cancer center just minutes from her home. She’s also painfully aware of how much education is still needed in the broader medical community. “I’ve had to explain my cancer to healthcare providers multiple times,” she says. “That’s one of the reasons I wanted to get more involved—to raise awareness and improve education about this disease.”She also draws strength from staying informed. “Some people say, ‘don’t Google your diagnosis,’ but I did. And from there I read and learned as much as I could. I even watched an international conference on lung cancer a few months after my diagnosis, just to learn more. Doing this helped me feel more in control in a situation that felt so out of control at the time.” These days, Jill’s hope is tangible. She’s working out regularly, meeting with a nutritionist, and staying on top of her health. “I read about a study that showed that exercise reduced recurrence in other cancers, and I thought—great! I can walk. I can bike. That gives me hope.” Jill’s journey is unique, but her experience echoes that of so many others who are living with lung cancer. She’s part of a growing movement of survivors who are not only beating the odds but also changing the narrative around this disease. “I hope my story helps someone else,” she says. “Whether it’s a newly diagnosed patient, a caregiver, or a policymaker, if sharing what I’ve been through helps someone else feel less alone or more empowered, then it’s all worth it.”

As Congress breaks for its annual summer recess, it offers a moment to reflect on the state of federal policy and what it means for lung cancer patients, research, and the broader medical community. We are using this time to take stock of key developments so far this year and reaffirm why our advocacy matters now more than ever. Over the past 6 months, actions at the federal level have raised deep concerns. Proposed cuts to scientific and medical research threaten not only public health but also innovation, the economy, and the future of cancer care. One of the most significant threats is a proposed $18 billion reduction to the National Institutes of Health (NIH), which is nearly 40% of its total budget. These cuts would freeze or eliminate thousands of research grants and clinical trials, many of which focus on cancer, mental health, HIV, ALS, and other life-threatening conditions. For cancer research in particular, the potential setback is alarming. Cuts in hundreds of millions of dollars and the cancellation of hundreds of trials could erase decades of hard-won progress. The Congressional Budget Office estimates that this level of disinvestment could lead to up to 20 fewer new drugs entering clinical trials each decade. At the same time, reductions to the Food and Drug Administration’s (FDA) budget could slow the review and approval of new treatments. These are delays that people living with or at risk for cancer cannot afford. The consequences extend beyond patient care. NIH research funding fuels economic growth in communities across the country, generating roughly $2.60 in economic activity for every federal dollar invested. These funds support small businesses, universities, and research institutions, helping to build strong local economies and a vibrant scientific workforce. Without stable, predictable investment, top researchers are likely to leave the field or the country, while young investigators may be forced to abandon promising careers altogether. As the U.S. pulls back, other nations, in particular China and the European Union, are increasing their investment in biomedical innovation, threatening our global leadership in science and medicine. That’s why GO2 has been fully engaged in advocating against these harmful proposals. We’ve been working with our partners, meeting with lawmakers, and activating our community to raise awareness and demand action. Our goal is to ensure that lung cancer is not overlooked and that the policies shaping our future prioritize patients, science, and equity. We are determined to protect the progress we’ve made, to drive continued innovation, and to transform survivorship for everyone affected by this disease. Here are key highlights of our advocacy efforts:

Reversing cuts and restoring federal research funding

We are staunch advocates for the highest possible funding levels for key federal health and research agencies, including the National Institutes of Health (NIH), the National Cancer Institute (NCI), the Advanced Research Projects Agency for Health (ARPA-H), and the Food and Drug Administration (FDA). As a member of the Once Voice Against Cancer (OVAC) coalition we are contributing to a strong and diverse national health leadership voice calling on Congress to reverse federal funding cuts. We are urging Congress to preserve a dedicated Lung Cancer Research Program (LCRP) housed within the Congressionally Directed Medical Research Program (CDMRP) in the Department of Defense (DOD). This pipeline was established in 2008, and our advocacy efforts each year have secured to date over $245.5 million for our research community. We are working to restore $25 million in an earlier FY25 budget resolution. Regarding the current FY26 budget, we are urging Congress to provide the full $60 million for the LCRP pipeline. This investment is essential to advancing lifesaving innovations in lung cancer detection, treatment, and survivorship.

Ensuring access to care

We have expressed opposition to several healthcare provisions in the ‘One Big Beautiful Bill Act’, which roll back coverage and reduce support for patients and providers across the country.  The bill contains steep Medicaid cuts and adds restrictions, such as work requirements, that could hinder access to lung cancer care for low-income and vulnerable patients.

Advancing priority legislation to improve lung cancer outcomes for women and seniors

The Women and Lung Cancer Research and Preventive Services Act of 2025 (H.R. 2319/S.1157), led by Representatives Brendan Boyle (D-PA) and Brian Fitzpatrick (R-PA), and Senators Tina Smith (D-MN) and Shelley Moore Capito (R-WV) would address the unique and devastating impact of lung cancer on women. The bill has been reintroduced and recently advanced through the House Energy and Commerce Committee.The Nancy Gardner Sewell Medicare Multi-Cancer Early Detection (MCED) Screening Coverage Act (H.R. 842/S. 339) would enable earlier detection and improved outcomes through Medicare coverage of MCED tests.

Working to preserve no-cost lung cancer screening

The Supreme Court ended its term with a lifesaving victory for our community. In Braidwood Management Inc. v. Kennedy, the Court ruled to protect no-cost lung cancer screening, ensuring this vital tool for early detection remains covered. We joined an amicus brief in this case to help protect access to preventive care, and we will stay vigilant—standing strong to defend these screenings and the lives they help save.

Strengthening state plans to fight lung cancer

We evaluated comprehensive cancer control (CCC) plans in all 50 states and Washington, D.C. and found major gaps in screening, biomarker testing, and treatment goals.  With the Centers for Disease Control’s cancer prevention and control division, which is key to funding and supporting these plans, slated for elimination in the FY 2026 proposed budget, it’s more urgent than ever to support states in closing these gaps.  We will continue to advocate for stronger inclusion of lung cancer in state comprehensive cancer control plans.

Joining partners and coalition efforts to preserve and protect access to affordable, high-quality and equitable care

Learn about our joint coalition efforts to preserve and protect access to affordable and equitable care by reading our policy letters. As Congress comes back into session this fall, we will continue to push for policies that preserve healthcare coverage, safeguard access to care, support medical innovation, and ensure that those impacted by lung cancer are not left behind.