Newsletter articles

When Rachel S. talks about her mom, Jan, you can still feel the energy she brought into every room. Jan was hilarious, dramatic in the best way, endlessly curious, and deeply kind, the type of person who made everyone feel special. She loved through food, through knitting, and through gathering people together.

In late September 2024, Rachel and her family were blindsided by a stage 4 (IV) lung cancer diagnosis. Just months later, on January 17, 2025, Jan passed away. The loss was sudden and devastating, but her spark never faded.

Today, Rachel and her family honor Jan’s life by coming together each year at GO2’s Sacramento 5K Walk/Run in her memory, turning grief into connection and action. We sat down with Rachel to learn more about her mom’s life, legacy, and the impact she continues to have on everyone who loved her.

Tell us about Jan

If I were introducing my mom at a gathering, there’s a strong chance people would already know her – or she would have already made herself known. She was genuinely hilarious. The kind of person who could tell a story and have an entire table crying with laughter. She was loud in the best way, dramatic, animated, obsessed with true crime, and completely unafraid to strike up a conversation with anyone. People loved her. I mean truly loved her. She had fans. But underneath all of that personality was someone deeply kind and interested in people. She made you feel special. That was her magic.

What were some of the things she was most passionate about – hobbies, traditions, routines, or little quirks that made her her?

After I left for college, her best friend taught her to knit. That turned into hundreds of beanies and blankets for family, friends, grandchildren – even cancer organizations. She was also the quintessential Jewish mom – an incredible cook and host. Holidays and gatherings at our house were sacred. Feeding people was how she loved them.

Can you share a moment or memory that feels especially representative of who she was?

My mom would move mountains for my sister and me. In 1998 she surprised us with Backstreet Boys tickets and a trip to Las Vegas – and then surprised us again with a second night and front row seats. That kind of over-the-top joy was so her. After she passed, they announced a Vegas residency, and my dad, sister, and I went. It felt like she made it happen.

When she was diagnosed, what do you remember most about that time – emotionally or practically — for your family?

It was a living nightmare. One day she was healthy, and the next we were told it was stage 4 (IV) lung cancer. By the time we had answers in late September, tumors had fractured her spine, and she was in bed until she passed on January 17, 2025.

Everything was hard. She couldn’t move, so every appointment required enormous coordination. We were incredibly fortunate to have neighbors and lifelong friends who stepped up in extraordinary ways.

Even with that support, it was overwhelming. There are so many unknowns with a diagnosis like this, which is why guidance and community around lung cancer matter so much.

How did she approach life in the months that followed her diagnosis?

She was still herself. Sassy. Funny. Curious. Even from bed, she wanted to know all of the gossip. She still made jokes. That spark never left her.  

What kind of impact did she have on her family, friends, and neighbors?

The number of people who showed up for her and for us told me everything I needed to know about her impact.

She built real relationships. With neighbors. With lifelong friends. With our friends. With people she met once and somehow remembered forever. She made people feel seen and important. That kind of energy doesn’t disappear.

Since her passing, how have you seen her legacy live on in your family or community?

Her knitting is everywhere. Her recipes are still in rotation. We still host. We still gather.

But more than anything, she changed how we live. There’s a depth now. A perspective you don’t get unless you’ve experienced loss like this. We don’t sweat the small stuff the same way anymore.

Can you describe what motivated you to participate in   GO2’s Sacramento 5K Walk/Run in her honor?

Grief is disorienting. I needed community and I needed direction. I needed to turn heartbreak into action. If I couldn’t save my mom, I wanted to help save someone else’s. Leading the 5K in her honor felt like the most meaningful way to do that.

What does it mean to you to have family and friends come together at this event to celebrate her life?

We formed our team just a month after she passed. It was still so raw, but we needed it.

Seeing that many people show up for her – walking, donating, wearing her name – was incredibly healing. It reminded us how much she meant and that we were helping fund real progress in her honor.

How does this event help shift the narrative around lung cancer from loss and stigma to community, celebration, and hope?

Cancer is everywhere. It’s happening younger. It’s happening to nonsmokers. It’s happening to people who “did everything right. “Events like this help dissolve isolation. They replace stigma with community. They remind families that they are not alone. And, they fund real progress.

Grief can be incredibly lonely. This makes it collective, and collective grief can become collective hope.

If you had to sum up what you hope readers understand about your mom, what would you want them to take away?

There will never be enough time with the people we love. My mom lived loudly, generously, and with joy. I hope people step away from the noise of daily life and remember that right now is what we have. Don’t wait to show up. Don’t wait to say the thing. Live bigger while you can.

Honor your loved ones by joining a GO2 5K Walk/Run near you, or by starting your own team. Every step helps fund programs, research, and resources that ensure no one faces lung cancer alone. Find an event and join us!   

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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.

Glen lives in Hercules, CA with his Yorkie, Kuma, where he moved in 2021 to be closer to family and friends. After nearly 20 years working in the probation department, he retired at the beginning of the pandemic and began volunteering at the East Bay SPCA. What started as a way to give back quickly turned into a full-time job. These days, you’ll often find him on his daily walk to Starbucks or visiting his mom, who lives just 15 minutes away.

Jeffrey B. Velotta, MD, FACS is a thoracic surgeon at Kaiser Permanente’s Oakland Medical Center, a Clinical Professor in the Department of Clinical Science at Kaiser Permanente’s Bernard J. Tyson School of Medicine, and a clinical assistant professor in the Department of Surgery the UCSF School of Medicine. Dr. Velotta went to medical school at George Washington University. He then completed his general surgery residency at UCLA Medical Center. During this time, Dr. Velotta also completed his postdoctoral research in the Department of Cardiothoracic Surgery at Stanford University School of Medicine. Following this, he completed his training in Cardiothoracic Surgery at Brigham and Women’s Hospital and Harvard Medical School. Dr. Velotta’s clinical and research interests involve innovative techniques and regionalization pathways for all thoracic cancers and improving lung cancer screening in at-risk populations.

When Glen first noticed chest pain in the fall of 2024, lung cancer wasn’t on his radar. He was in physical therapy at the time and assumed the discomfort was muscular and temporary. But 1 test led to another, and by December, an X-ray raised concerns that couldn’t be ignored.

On December 24, 2024, Glen had a biopsy. Four days later, he received a phone call confirming cancer.  

“I didn’t know what stage I was or much about what I was even being diagnosed with,” Glen recalls. “I just know it turned my world upside down.”

Glen didn’t have a smoking history, and there was no history of lung cancer in his family. Yet here he was, grappling with a diagnosis he never expected and didn’t yet fully understand.

Hearing the worst news, but not much else

Glen remembers little of the conversation that followed his diagnosis. His oncologist delivered the news with compassion, giving him permission to react however he needed.  

“She said, I’m telling you the worst news I could possibly tell you. It’s okay if you get upset, scream, or cry. I’m here,” he says.

But like many patients in that moment, Glen fixated on 1 question: How long do I have to live? “I wasn’t really hearing anything else,” he says. “My best friend was with me, taking notes. I’m glad she was there because I don’t remember much of what was said. I could only think about my prognosis.”

In the days that followed, Glen did what so many people do, he went online. And almost immediately, he regretted it. “That was the worst thing I could do,” he says. “You Google stage 4 (IV) lung cancer and life expectancy, and the first article you see tells you that this is really bad news. You don’t even need to read the rest.”

Treatment, side effects, and a growing sense of fear

Glen began treatment quickly. His first regimen included radiation to his brain and chest and an infusion therapy that caused repeated breathing reactions. After 4 reactions across 2 sessions, his care team stopped the drug. He later transitioned to Tagrisso (osimertinib), which he is still on today and has tolerated much better.

But emotionally, Glen was spiraling. He describes himself as generally relatively pessimistic by nature, and the statistics he’d read didn’t help. He began quietly preparing for the end, updating legal documents, organizing passwords, and making sure his affairs were in order.

A parking lot, a 5K, and an unexpected meeting

Everything began to shift at GO2’s San Francisco 5K Walk/Run. Glen attended the event almost on a whim after finding information about it online. He arrived early, sat in his car, and debated leaving. Eventually, he got out and walked toward the event, unsure why everyone seemed so happy. “This is a cancer walk,” he remembers thinking. “Why is everyone smiling?”

A volunteer noticed he wasn’t okay and introduced him to GO2’s Senior Manager, Support Programs and Events, Michele Zeh. As Glen shared how bleak he was feeling, she pointed around the room. “This person has 10 years since their diagnosis. That person has 8,” she told him.

“And I’m thinking, how is that possible? I thought people never lived that long,” Glen says.

Then Michele asked a simple question: “Do you know Dr. Velotta?”

Glen didn’t. But meeting him was about to change his life.  

“Let’s get rid of the mothership”

Dr. Jeffrey Velotta is a thoracic surgeon at Kaiser Permanente in Northern California, and one of only a small number of surgeons in the country willing to seriously consider surgery for patients with stage 4 (IV) lung cancer.

When Glen met him, the conversation felt different immediately. “He really cared,” Glen says. “I could tell right away how passionate he was about lung cancer and about the people who have it. It made me feel good.”

Dr. Velotta reviewed Glen’s scans and told him that he could be a good candidate for surgery, a treatment that might help his prognosis despite his stage 4 (IV) diagnosis. He explained his thinking using an analogy that stuck.

“We’ll get rid of the mothership,” he said.

The primary tumor, Dr. Velotta explained, was like a command center that was sending cancer cells elsewhere. If Glen’s metastatic disease was controlled with medication, removing the original tumor could still slow or stop future progression.  

“The approach made sense to me,” Glen says. “You’re radiating my brain and my bones but you’re leaving where it all started? Why not get rid of that, too?”

Why surgery for stage 4 (IV) is still so controversial

Dr. Velotta is blunt about how unusual his approach still is. “I don’t think every patient with stage 4 (IV) lung cancer should have surgery,” he says. “But I absolutely believe that some should, including many more than most doctors currently consider.”

In addition to being younger, healthier, and generally fit, the key factor that makes someone a good candidate, he explains, isn’t the extent of the disease or the number of metastases, but whether disease outside the lung is controlled.

“Glen had multiple spots in his brain, bones, and elsewhere,” Dr. Velotta explains. “But his cancer was well-controlled through a tyrosine kinase inhibitor (TKI). That’s what people call ‘polymetastatic’ disease. Most surgery trials exclude patients like that. But that’s actually the majority of people with stage 4 (IV) lung cancer.”

Clinical trials, he notes, tend to focus on patients with 1 or 2 metastases, not because others can’t benefit, but because trials are designed to show clean, easily publishable results. This disconnect, he believes, is 1 of the reasons surgery remains underused for people with advanced disease. “That leaves most patients out,” he says. “And it leaves surgeons hesitant.”

A lonely position in the field

Even today, Dr. Velotta says the prevailing mindset around surgery for stage 4 (IV) lung cancer hasn’t shifted much. “The thinking is that it’s too little, too late. We’ve missed the chance to help these patients surgically. The idea is that the cat’s already out of the bag,” he says.

That assumption, that surgery can’t help once cancer has spread, is something he pushes back against constantly. “People get freaked out by polymetastatic disease,” he says. “They see multiple spots and think, ‘Oh my God, they’re everywhere.’ But if those spots are controlled, it doesn’t matter how many there are. Those patients can still benefit.”

Dr. Velotta acknowledges that his willingness to operate in these cases often puts him at odds with colleagues. “There is a stigma associated with operating on stage 4 (IV) lung cancer,” he says.  

Even within his own health system, he is frequently the only surgeon willing to consider surgery for patients like Glen. “I feel very alone in this world sometimes,” he admits. “If these patients were all doing terribly, I would stop. But they’re actually doing really well.”

Instead, he says, many of his patients are living longer — and living well. “I’ve done this for 5 or 6 years. I’ve operated on many,” he says. “A lot of them are still alive. And even the ones who passed didn’t pass 3 months later. Some lived 6 plus years.”

Surgery as more than survival statistics

For Glen, surgery wasn’t just about controlling the disease. It was about reclaiming a sense of control over his own life. Surgery felt proactive to him, like taking control of his treatment and his future.  

Dr. Velotta sees that psychological impact again and again. “You can’t quantify that on a spreadsheet,” he says. “But mentally, it matters a lot.”

Glen agrees. “I felt better from the moment I knew I was going to have surgery,” he says. “I can’t put that on paper, but I felt different. Better. It has helped my mindset immeasurably.”

Glen had surgery on November 12, 2025. It was minimally invasive, and he went home 2 days later. Within weeks, he was walking hills near his house. Then jogging. Then biking.

“I’m not back to where I was yet,” he says. “But I’m close. And I really don’t mind putting in the work.”

Pathology from his surgery showed just .5 millimeters of active cancer remaining in the tumor that was removed. “All I cared about was that it wasn’t inside me anymore,” Glen says.  

NED — and what hope looks like now

When Dr. Velotta emailed Glen with the words “NED” or “no evidence of disease,” Glen didn’t fully grasp what it meant, but others did. “When I told people at GO2, they got really excited,” he says. “That’s when I realized, oh, this is a big deal.”

Hope, he says, is everything. “Sometimes I’m still pessimistic at heart,” he admits. “But the surgery has given me so much more reason to have hope for the future, and hope is what keeps me going.”

On sharing his story

Glen hesitated before agreeing to speak publicly about his experiences with lung cancer. Talking about cancer can still pull him into dark places. But ultimately, he agreed for 1 reason.

“If this helps 1 person,” he says. “If someone like me hears this and thinks, ‘Maybe surgery is an option for me, maybe I should ask’, then it’s worth it.”

Dr. Velotta agrees. “I just want people to know that they can ask,” he says. “That’s huge progress.”

GO2’s HelpLine is a free, one-on-one service that connects patients and caregivers with experienced staff who can provide guidance, referrals, resources, and, most importantly, hope. Whether it’s questions about biomarker testing, treatment options, or simply needing someone to listen, the HelpLine is often the first step toward feeling less alone after a lung cancer diagnosis. Call 1-800-298-2436 or email support@go2.org to get started.

By Matthew Reiss, MSE, PhD, Manager, Precision Medicine & Navigation, GO2 for Lung Cancer 

Hearing that cancer has spread to the brain or spinal cord can be a frightening, but very real outcome for many people living with lung cancer. While exact statistics are hard to pin down, recent studies suggest that about 10-40% of lung cancer patients’ cancer will spread to the brain or central nervous system.  

One rare form of spread, called leptomeningeal disease (LMD), can be especially confusing because it is unfamiliar and often hard to explain in simple terms. But better understanding what LMD is and how it may be treated can help you advocate for yourself in conversations with your healthcare team.

What is leptomeningeal disease?

To understand leptomeningeal disease, it can help to picture how the brain and spinal cord are protected. In the body, these structures are wrapped in a thin layer of tissue called the meninges. Inside these layers flows a clear liquid called cerebrospinal fluid (CSF), which helps to cushion and nourish the brain and spinal cord.

Leptomeningeal disease occurs when cancer cells, such as those from the lungs, travel to, and start growing in, the meninges or in the CSF surrounding the brain and spinal cord.  

How is LMD different from other brain metastases?

Many people have heard how cancer can sometimes spread from the lungs by travelling through the bloodstream to the brain, where it can begin to grow. These are called brain metastases or brain mets. Brain mets are not brain cancer, but rather lung cancer that has spread to the brain.

Leptomeningeal disease is different. While brain mets usually form as a solid tumor(s) in the brain itself, LMD involves the lining and fluid around the brain and spinal cord. Instead of a single or multiple solid tumor masses, LMD can look more like a thin coating or a pattern of streaking around/within these structures, possibly affecting many areas at once. This can make LMD harder to see on a scan and more challenging to diagnose

Because of this, symptoms of LMD can vary widely, and no 2 people experience LMD the same way. Often, symptoms include:  

• Headaches
• Nausea
• Changes in thinking or mood
• Double vision
• Weakness
• Difficulty walking
• Back pain
• Numbness

This also makes LMD more difficult to diagnose. Often, an LMD diagnosis is confirmed by collectively considering the results of MRI scans, spinal fluid tests, and other clinical exams.

How common is LMD in lung cancer?

Leptomeningeal disease is not common, but it is a possibility to be aware of for individuals living with lung cancer.

For individuals with non-small cell lung cancer (NSCLC), LMD is very rare:

• Studies show that LMD occurs in about 3-5% of individuals living with NSCLC.
• It is more common in people with mutations or changes in genes such as EGFR, ALK, and ROS1.

LMD is more common, but still rare, in people living with small cell lung cancer (SCLC):

• About 2% of individuals with SCLC have signs of LMD at diagnosis.
• About 10% of individuals with SCLC have developed LMD after 2 years.

You may also sometimes hear people say that LMD diagnoses are becoming more common. While true, many researchers believe LMD is being diagnosed more often today, not only because of better scanning technology, but also because new treatments are allowing people to live long enough with lung cancer for rarer complications like LMD to occur.

Even though it’s uncommon, knowing the basics of LMD can help people better recognize symptoms early and get connected with a specialist.

The importance of seeing a specialist

Because LMD is complex, it is very helpful to work with clinicians who have experience treating it. Your doctor may refer you to a:

• Neuro-oncologist – a doctor specializing in cancers found in the brain and nervous system
• Medical oncologist with LMD experience
• Radiation oncologist – a doctor specializing in the use of radiation to treat cancer in areas such as the brain and spine

These experts work with your current healthcare team and can often open the door to more treatment options or clinical trials to help manage the cancer.  

Treating LMD can also be complex. Sometimes treatments that work well in one part of the body do not work the same way or as effectively in the brain or CSF. If this happens to you or your loved one, it’s completely normal to feel overwhelmed. You can always ask your care team to slow down, repeat information, or clarify anything. Asking questions is an important way to advocate for yourself.

Current treatment approaches for LMD

Overall, the goals of treatment for people with LMD are usually to slow or control further spread of the cancer, protect quality of life, and relieve troublesome symptoms such as pain, nausea, or nerve issues.

Exactly which treatment someone receives for LMD is highly personalized, but there are several commonly used approaches:

• Targeted or systemic (whole-body) treatments: For some people who have certain genetic changes, targeted therapies or immunotherapies can be effective ways to treat LMD. For others who do not have genetic changes that can be targeted, traditional chemotherapy is often used.
• Radiation therapy: Targeted radiation may also be used to treat the specific areas of LMD that are likely causing symptoms. For others, radiation may be used more widely along the brain or spinal cord to treat LMD over a large region.
• Intrathecal therapy: In some cases, medicines such as chemotherapy are delivered directly into the spinal fluid through a small device or spinal tap. This approach allows the treatment to better access the protected part of the body where LMD is occurring, although this approach is not appropriate for everyone.
• Supportive and palliative care: This approach includes medicines and services that focus on symptom relief, mobility, and emotional support for people with LMD, rather than treating the LMD directly. Supportive and palliative care should be offered alongside other treatment approaches.
• Emerging approaches: While LMD remains a serious diagnosis, there is real progress being made in clinical trials to find new and better ways to treat LMD and improve long-term outcomes. Talk to your healthcare team about whether a clinical trial for LMD may be right for you.

Closing thoughts

Leptomeningeal disease is complicated, and it is normal to have questions. If you or someone you care about has been told they have leptomeningeal disease related to lung cancer, reach out to your care team, ask about a referral to an expert, and feel comfortable asking questions related to your treatment options. Clear information is empowering and can help you advocate for the best possible care.  

If you’d like to learn more about LMD and its treatments, have questions, or need support, please contact our free HelpLine at 1-800-298-2436 or email support@go2.org.

When Mike Scanlon set out on a 30-day, 700-mile bike ride across Kansas, the journey ahead of him was daunting. He had 60 trails, 50 towns, and what felt like endless gravel roads ahead of him. But for Mike, who is living with stage 4 (IV) non-small cell lung cancer (NSCLC), this ride was about more than just the distance. It was about purpose and about transforming his diagnosis into something bigger.

At the heart of Mike’s journey was a principle that has guided his work and his life for years: the Athenian Oath, a commitment to leave things “not less, but greater, better, and more beautiful than they were transmitted to us.” Turning his ride into a fundraiser for GO2 for Lung Cancer and Kansas Trails Inc. was a natural extension of that belief. “I’ve always tried to live in a way that gives back,” Mike shared. “This ride felt like a way to do that — to take something personal and make it meaningful for others.”

Choosing “even if” over “only if”

Mike often described the Ride for Resilience tour as a lesson in mindset. It was one shaped deeply by his cancer diagnosis. Living with stage 4 (IV) NSCLC, he explained, can trap people in “only if” thinking: “I’ll have peace only if treatment works. Only if scans stay clear. Only if life goes back to normal.”

But the road taught him another way.

“The power of an ‘even if’ perspective is that it frees you to live with purpose no matter what happens,” Mike said. “Even if the road is uncertain. Even if outcomes aren’t guaranteed. Even if this journey reshapes your life.”

For Mike, resilience wasn’t about controlling the outcome. It was about choosing courage anyway. Pedal after pedal, day after day, that mindset carried him forward.

Trails, towns, and the strength of small places

Kansas is home to more than 4,000 miles of trails, and Mike wanted to experience as much of that diversity as possible. Riding 60 trails across 50 towns allowed him to connect not just with landscapes, but with people — especially in small, rural communities.

“I wanted to see how adaptable and resilient these towns are,” he said. “A lot of them don’t have much, but they keep showing up.”

That resilience came into sharp focus in places like Copeland, KS, population 251. A stop at the town library became a powerful reminder of shared values and of communities that quietly live out the Athenian Oath and the “even if” mentality every day. These towns, like people facing cancer, keep moving forward despite uncertainty.

Sharing the road and stories

Along the way, survivors, caregivers, and families found Mike. Sometimes it was literally on the trail, sometimes through word of mouth. They rode beside him and shared their stories.

Over the course of the ride, Mike connected with people across Kansas, creating space for honest conversations about cancer, treatment, and hope. He shared information about GO2 for Lung Cancer, including resources available to individuals and families at every stage of the disease.

“Cancer is deeply personal,” Mike reflected. “The courage it takes for people to open up always floored me.”

From a sales director at a Salina radio station to an administrative assistant at a high school in Wamego — who happened to share Mike’s same lung cancer mutation and treatment — these conversations became some of the most meaningful moments of the ride.

Hard miles and harder questions

The ride tested Mike in ways he didn’t expect, including fast farm dogs on gravel roads (most of which he could outpace, except one). But the hardest challenges weren’t physical. They were mental.

“I’ve been given an opportunity many people with NSCLC don’t get,” he said. “And I can’t waste it.”

A note from a donor, a message of encouragement, or simply the mantra JKP — Just Keep Pedaling — helped him find the answer.

The ride of a lifetime

The final day was a 93-mile ride along the Flint Hills Trail from Council Grove to Osawatomie felt symbolic. Mike saw the day as a reflection of life itself: starting early, uncertain, learning as you go, growing stronger, then feeling your body push back near the end.

And then, 2 miles from the finish, everything changed.

“I saw my grandson, Augie,” Mike said. “He wanted to ride the last 2 miles with me. And I knew his little brother PJ was waiting at the finish line with my daughter Megan.”

As Mike’s journey that day ended, his grandsons’ life journeys were just beginning, bringing the Athenian Oath full circle. “My obligation,” Mike said, “is to transmit Kansas trails — and this life — not less, but greater.”

Your turn to find your “Ride for Resilience”

Mike’s advice to anyone considering a fundraiser for GO2 for Lung Cancer is simple: define your reason.

“Mine was the Athenian Oath,” he said. “Once you know your why, invite others to help.”

Through his 700-mile journey, Mike raised more than $24,000, helping fuel GO2 for Lung Cancer’s work to increase lung cancer survival by supporting cutting-edge research, legislative advocacy, and patient support services for individuals and families nationwide.

Whether it’s a ride, a walk, a creative challenge, or something uniquely yours, your fundraiser can make a difference. As Mike’s journey shows, resilience isn’t about what happens only if everything goes right — it’s about choosing to act, even if the road ahead is uncertain.

And sometimes, all it takes is the courage to start pedaling.

Learn more about how you can create your own fundraiser for GO2 for Lung Cancer. 

June & Roy live in Kennebunk, Maine, a place they moved after visiting and vacationing many times throughout their lives. They enjoy barefoot beach walks, snowshoeing, many volunteer activities focused on environmental issues, Indigenous People’s rights, social justice issues, and textile drives organized by June which have kept over 20 tons of textiles and footwear out of landfills. They also enjoy exploring Maine’s forests and mountain areas. June is a retired clinical registered dietician while Roy is a retired banking executive and director. They see a return trip to Switzerland and other excursions in their future. Their favorite toast with an adult beverage is “Ein Sache”, followed by “Uns” — German for “One Thing” and “Us”. Roy is still trying to find where June hid his heart when she stole it. She promises him that it’s in a safe place.

After a history of heart disease, Roy has learned to pay attention to his body, so when he experienced shortness of breath in July 2018, he went to the emergency room. This time, his heart wasn’t his problem. Imaging revealed a large mass in his upper right lung and, with it, a diagnosis that would reshape his years ahead.

Doctors moved quickly. A biopsy confirmed lung cancer, and additional scans showed it had spread to nearby lymph nodes, ruling out surgery. Roy was referred to David Carbone, MD, PhD at The James Comprehensive Cancer Center, where a treatment plan came together quickly.

Roy enrolled in a clinical trial led by Dr. Carbone to explore using immunotherapy in people with stage 3 (III) non-small cell lung cancer (NSCLC). He would receive immunotherapy, then radiation, then chemo, and then immunotherapy again.

The early months were manageable, and Roy didn’t experience any side effects during his initial immunotherapy infusions. Radiation and chemotherapy followed, spaced carefully over many weeks. But toward the end of treatment, a rare and severe reaction to chemotherapy landed Roy in the hospital for 10 days.

This experience forced difficult treatment decisions and required Roy to advocate for himself, something he had learned to do years earlier while caring for his late wife during her illness. Immunotherapy was paused, then ultimately stopped altogether, when Roy developed serious gastrointestinal side effects. By that point, his treatment had already achieved a complete response, and his body could not tolerate continuing.

With treatment complete, Roy entered a new phase: survivorship, including regular monitoring and cautious hope. Follow-up scans initially came every 6 months, then 9, then eventually once a year.

Judy’s story

Roy’s experience with lung cancer was not his first time navigating serious illness. Just a few years earlier, he had walked a parallel path alongside his late wife, Judy.

In November 2015, Judy collapsed in their shower at their home in southeastern Ohio. At the hospital, imaging revealed a large mass in her brain. Judy immediately understood what that meant. Her aunt had died of glioblastoma years earlier, and Judy had been one of her caregivers.

Judy underwent brain surgery the day before Thanksgiving, followed by months of treatment including clinical trials, aggressive chemotherapy, and a 2nd surgery. Despite everything, Roy remembers her determination to keep living fully and authentically, even as options narrowed.

Judy approached her illness with the same intention and creativity that defined her entire life. A spiritual director and artist, she continued creating throughout her treatment, painting, weaving, and writing as a way to make meaning of what she was experiencing. Even after a stroke affected her body’s complete left side (she was left-handed), she adapted, learning to work with her right hand and allowing her art to evolve alongside her changing body.

For Judy, creativity was not a distraction from illness, but a way of engaging with it honestly. She remained deeply connected to people around her and committed to living as fully as possible, even as she faced her reality of a terminal diagnosis.

“She always showed us how to live,” Roy recalls a close friend saying about Judy. “Now she’s showing us how to die.”

Keeping a promise

Judy died in October 2016, after time in hospice that Roy describes as both heartbreaking and deeply meaningful. In his following years, he turned to journaling as a way to survive his abysmal grief.

“For 2 years, I journaled every day,” Roy said. “Sometimes 2 or 3 times a day, whether I was on my porch or in a local pub or a restaurant or the Grand Canyon, you would find me with my journal in hand.”

His writing became a form of self-therapy, a place to hold and process anger, memories, gratitude, and loss all at once. Over time, it also became the foundation for something Judy had asked Roy to do before she died.

“She made me promise to publish her art and her words,” Roy said. “And I said yes, not knowing at the time what that might look like.”

The result was a book built from Judy’s artwork and writing and interwoven with Roy’s journals to become a 3-part story about living well, dying honestly, and finding a way forward. What began as a promise became a project that took 5 years to complete and eventually reached far beyond Roy’s immediate circle. They edited over 950,000 words from him and Judy down to about 85,000 for the book.

Roy is clear that their memoir and award-winning love story was never meant for a narrow audience. It has resonated with people navigating serious illness, caregivers walking alongside loved ones, and healthcare professionals seeking to better understand the lived experience of patients and families.

“I’ve heard from hospice workers, nurses, and social workers who said it helped them better understand the people they care for,” said Roy. Others have told him they read the book not because they were facing illness themselves, but because they wanted to understand who they hoped to be when life becomes difficult for them.

Today, Roy and his new wife, June, give the book, “It All Belongs,” away freely, believing it is meant to be in people’s hands rather than on a warehouse shelf. Copies are available at no cost, with readers asked only to cover shipping. To learn more or request a copy, visit http://itallbelongsbook.com and use code “GO2Cancer” for your free copy.

June

June had been part of Roy’s life long before his lung cancer diagnosis. June met Roy’s late wife Judy through their Ohio church and became close friends. After she died, June and Roy became support for each other, and when Roy learned he had lung cancer, June was one of the first people he called.

“She screamed,” Roy remembered. “And I hated making her feel such pain.”

At that time, June and Roy were just beginning to recognize their growing feelings for each other, but for June, her decision to stay, to support Roy, and eventually to build a life together was instinctive.

“I had this voice that said, ‘I’m not going to let him go through this by himself. He’s already lost his wife of almost 40 years and had more than enough pain from her death,” she said. “I didn’t care where we were going to go or what we had to go through. I was in.”

When Roy proposed, he made sure June understood the reality of his diagnosis. “I said, ‘Do you realize I may not be here in 2 years?” he recalled.

Her answer was immediate. “Well, it’ll be the 2 best years of my life.”

June attended every appointment and every treatment with Roy, and their love deepened even as they navigated all of lung cancer’s difficult challenges together.

They married in Iona, Scotland during Roy’s treatment, after asking his care team whether it was safe to travel. Their answer was yes, and the moment became one of joy woven into a difficult chapter.

What comes next

For more than 5 years after completing treatment, Roy’s scans remained clear. Then, in the fall of 2025 during a routine follow-up appointment with his new oncologist at the Dana-Farber Cancer Institute after a move to Maine, everything shifted again.

“Dr. Sands walked in,” Roy said. “And for the first time he didn’t say, ‘We didn’t find anything.’ Immediately, I knew something was wrong.”

A new tumor had appeared in the same area of his lung that had already been heavily treated. Because of prior radiation and scarring, many treatment options were no longer possible.

“Every option we brought up – radiation, surgery – they just kept getting pushed off the table,” Roy said. “That has been really hard.”

After consultations with multiple specialists, Roy and his care team determined that immunotherapy would likely be their next step. They are currently waiting on additional testing to confirm this as their treatment course, and Roy is eager to get started. While their next steps are currently uncertain, Roy is not without perspective.

“For me to be loved by two such incredible women and to be able to love two incredible women in one lifetime,” he said, “I don’t need a whole lot else. We’ll figure out the rest.”

If you or a loved one are facing similar uncertainty—whether newly diagnosed or navigating what’s next—GO2’s LungMATCH team can help you understand treatment options, including clinical trials, and talk through next steps. Call 1-800-298-2436 or email ‍ support@go2.org to connect with a LungMATCH Navigator.‍ to connect with a LungMATCH Navigator.

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A groundbreaking new open-access textbook, “Lung Cancer Navigation and Care: A Comprehensive Guide for Navigators and Allied Health Professionals,” is now available. As the first site-specific, comprehensive clinical guide for lung cancer navigation, the textbook equips navigators and allied health professionals with foundational knowledge, evidence-based practices, and practical tools to elevate the quality of lung cancer care and improve outcomes for people at risk for or living with the disease.  

The textbook is co-edited by GO2 for Lung Cancer’s (GO2) Joelle Fathi, DNP, RN, ARNP, FAAN, Chief Healthcare Delivery Officer, and Meg Fay Mortman, RN, BSN, ONN-CG, Nurse Manager. It features 22 chapters written by 41 subject matter experts, including GO2 Global Advisory Council members Dr. Hossein Borghaei and Dr. Debra Dyer.  

Lung cancer remains the leading cause of cancer-related deaths in the United States and worldwide. The new guide responds to the urgent need for timely, evidence-based, person-centered care, particularly for historically marginalized communities disproportionately affected by the disease due to social determinants of health.  

Each chapter is authored by multidisciplinary experts and provides in-depth evidence-based and current content, real-world vignettes, key takeaways, curated readings, and actionable resources. Together, they offer a practical roadmap to guide patients through screening, diagnosis, treatment, survivorship, and supportive care.  

“This textbook addresses a significant gap in lung cancer care,” said Fathi. “For the first time, there is a comprehensive, evidence-based guide created specifically for lung cancer navigators and allied health professionals. This is a vital tool for the professionals supporting patients every day.”

The guide directly addresses the disproportionate impact of lung cancer on Black, Indigenous, and other communities of color. These are populations that face higher risk, later-stage diagnoses, reduced access to innovation, and poorer outcomes. It highlights how navigation, particularly when delivered by culturally aligned professionals, plays a crucial role in closing these gaps and advancing equitable care.

Mary M. Pasquinelli, DNP, APRN, FNP-BC, CTTS, University of Illinois Chicago, who has been nationally recognized for her leadership in advancing early detection and equitable access to lung cancer screening, emphasized the importance of this resource. Under her guidance, UI Health’s lung cancer screening program has become a national model for inclusive, community-based care, ensuring more cancers are found at earlier, treatable stages.

“This guide equips clinicians and navigators with essential tools,” Pasquinelli said. “They can bridge the gap between rapidly evolving science and what happens in care delivery. It will directly improve the timeliness, quality, and equity of lung cancer care.”

The book also centers on the lived experiences of patients and families, an indispensable foundation of effective navigation.  

“Through my experience supporting my mother during her lung cancer care, I saw how impactful nurse navigators can be,” said Amita Jain, lung cancer survivor and patient advocate. “Although we did not change her medical plan, the guidance and information they provided were invaluable to our family. This resource will help ensure patients and caregivers receive clear communication, support, and dignity throughout the cancer journey.”

As advances such as biomarker testing, targeted therapies, precision medicine, minimally invasive surgery, and updated screening guidelines rapidly transform lung cancer care, effective navigation is essential to ensure all patients benefit equitably.  

“We created this resource to empower the professionals who are transformational partners in the screening and cancer care experience—navigators, nurses, nurse practitioners, social workers, community health workers, and other allied health professionals,” Fathi added. “Our hope is that this guide helps unify practice, drive equitable outcomes, and accelerate the integration of life-saving innovations into everyday care.”  

Key features of Lung Cancer Navigation and Care

• The first and only site-specific comprehensive guide dedicated to lung cancer navigation  
• Expert-authored chapters spanning the full care continuum, from screening high-risk populations through survivorship  
• Practical tools, including vignettes, key takeaways, curated readings, and actionable resources  
• Strategies for addressing social determinants of health and reducing disparities in lung cancer outcomes  
• Guidance for integrating navigators and allied health professionals into multidisciplinary care models  
• Open-access format, ensuring global availability and equitable dissemination  

Ideal for clinical teams, academic programs, and community-based organizations, “Lung Cancer Navigation and Care: A Comprehensive Guide for Navigators and Allied Health Professionals” provides the latest evidence, comprehensive guidance, and practical insights to support high-quality, patient-centered care. Access the textbook today.

By Matthew Reiss, MSE, PhD, Manager, Precision Medicine & Navigation, GO2 for Lung Cancer

This is the third blog post of our ongoing “Understanding Lung Cancer” series. This series aims to simplify the science behind lung cancer and help provide a deeper understanding of the disease. In the first and second parts, we introduced the basics of cells and explored how DNA damage can lead to cancer. We also discussed what drives cancer to grow and spread. This time, we’ll take a closer look at the role your immune system plays in cancer. We will also tackle how cancer cells avoid your immune system, and introduce the major types of lung cancer treatments used today, including approaches that are shaping the future of care.  

Your immune system: the body’s defense team

Aside from the cell’s own means of identifying abnormal cells and preventing them from growing, your body has another line of defense: your immune system. The immune system is made up of cells, tissues, and organs that work together. It protects you from infections, repairs injuries, and removes cells that are damaged or no longer needed. One of its most important jobs is to identify and destroy cells that aren’t acting normally, including cells that could become cancer. Think of it like an army inside your body. It is always on the lookout for anything that doesn’t belong, ready to fight it off to keep you healthy.

All cells have small “markers” or proteins found on their surface that tell the immune system whether they are healthy or not. If a cell seems abnormal, the immune system will target and destroy the cell before it becomes a bigger problem.

So you may wonder: If the immune system can remove normal cells, why doesn’t it always stop cancer?

How cancer cells avoid the immune system

Cancer cells are clever. As they grow and change, they learn new ways to hide from or block the immune system. There are several ways cancer cells do this, but the most common ways include:

• Hiding their abnormal markers so that immune cells can’t recognize them

• Displaying markers on their surfaces that act as “don’t attack me” messages to immune cells

• Creating an environment around the cancer cells that weakens the immune response

• Growing so quickly that the immune system can’t keep up

Cancer cells may use one or more of these methods to continue growing, even when the immune system tries to fight back.

Applying what we’ve learned

Now that we understand how cancer cells grow and how they avoid the immune system, we can focus on how current treatments work to address these challenges.

In addition to surgery, which is a treatment where a surgeon aims to remove the cancer itself, there are several commonly used treatment approaches in lung cancer.

Chemotherapy: a long-standing tool in cancer care

Chemotherapy, or “chemo,” works by attacking a cell’s ability to divide. It is known as a “systemic treatment,” meaning it travels through the bloodstream to affect the whole body, not just a specific, localized area. Unfortunately, this means that chemotherapy does not distinguish between healthy cells and cancer cells, which is why chemo often affects fast-growing cells throughout the body, including hair and blood cells. As a result, common side effects include hair loss and low blood cell counts.

Because cancer cells divide so much faster than healthy cells, chemotherapy can still be a useful treatment option for many people. Improvements over the years have made many chemo treatments easier to tolerate.

Radiation therapy: using energy to kill cancer cells

Radiation therapy uses high-energy beams to damage the DNA inside cells, including cancer cells. This slows their growth or destroys them. It can be delivered from outside the body, aimed directly at the tumor. In some cases, radiation is given directly to the tumor inside the body itself.  

Because radiation has the potential to also affect healthy cells, it’s usually given in specialized ways that minimize its effect on healthy cells while directing most of the radiation to the cancer cells specifically. As a result, radiation usually affects fewer healthy cells than chemotherapy, and today’s techniques are more precise than ever before.  

Targeted therapy: targeting what makes cancer cells different

We’ve previously talked about driver mutations. These are specific changes in the DNA of cancer cells that cause them to grow. Targeted therapies are treatments specifically designed to attack cells containing these driver mutations. Healthy cells are often spared, so people generally have fewer side effects.

The same targeted therapy won’t work for everyone,  because not everyone will have a driver mutation that can be treated using targeted therapies. This is why biomarker testing is so important, specifically in non-small cell lung cancer (NSCLC). The targeted therapy used is matched to each person’s test results.

There are many different kinds of targeted therapies, and new ones are being developed every day, but the 2 most commonly used targeted therapies in lung cancer are:

• Tyrosine kinase inhibitors (TKIs), which work by blocking the activity of the driver mutation in cancer cells to slow down or stop their growth.

• Antibody-drug conjugates (ADCs) that link targeting antibodies to chemotherapy-like drugs to deliver treatments directly to cancer cells. Think of it as “targeted chemo”.

Immunotherapy: using your immune system to fight back

Immunotherapies (sometimes called “IO”) are treatments that help the immune system recognize and attack cancer cells more effectively. Currently, immunotherapies fall into 2 main classes:

• Checkpoint inhibitors are a type of cancer treatment that blocks the cancer cells’ ability to hide from your immune system. This allows your immune system to better find and attack the cancer.

• T-cell engagers are a type of cancer treatment that helps T-cells (a type of immune cell) better connect to cancer cells. This connection helps the immune system attack the cancer more effectively.

New treatments on the horizon

Cancer research moves quickly. New treatments, including those that fall into the categories above, are always in development. But before they are used more widely, new treatments must first be studied in clinical trials to ensure they are safe and effective. Clinical trials give lung cancer patients a chance to try promising new treatments. They also help doctors learn what works best for future care.

Everyone is different. The exact treatment your healthcare team recommends may include one or more of the treatments listed above. It’s important to speak with your healthcare team about which treatment is right for you.

Coming up next: lung cancer risks and prevention 

In the final part of this series, we’ll explore the factors that can affect lung cancer risk. These include genetics, environment, and lifestyle choices. We’ll also discuss what individuals and communities can do to support prevention, early diagnosis, and better access to care. 

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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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