This bold, bipartisan legislation is designed to strengthen survivorship care and improve quality of life for the nearly 18 million Americans living with, through, and beyond cancer. From quality survivorship care planning and care coordination to employment support, this conversation explores how the bill addresses the real challenges survivors face every day and what it could mean for the future of cancer care.

Watch the town hall below or here on YouTube.

Video Details

Links & Other Resources:

• • Download the slide deck »
  • Cancer Nation’s CCSA Webpage
  • Children’s Cancer Cause CCSA Webpage
  • Lymphoma Research Foundation Statement on CCSA
  • Track H.R. 8839 on Congress.gov, see cosponsors and full bill text

About the Bill

The Lainie Jones Comprehensive Cancer Survivorship Act is bipartisan legislation introduced in the U.S. House of Representatives by Reps. Debbie Wasserman Schultz (D-FL), Brian Fitzpatrick (R-PA), Mark DeSaulnier (D-CA), and Joe Wilson (R-SC). The bill addresses the full spectrum of cancer survivorship, from diagnosis through the end of life. More than 50 national cancer organizations have already endorsed it.

The bill includes eight key provisions:

• Medicare coverage for cancer care planning. Establishes reimbursement for clinicians to provide survivorship care plans at diagnosis, during treatment changes, and at the transition to post-treatment care. In Cancer Nation’s 2025 Survivorship Survey, only 36% of survivors received a survivorship care plan, down from 43% the prior year, even survivors who received one reported feeling more confident managing their post-treatment care.
• Survivorship transition tools. Directs a stakeholder process to develop and publish best practices for using health information technology to improve care transitions, making it easier for survivors to carry a complete record of their cancer treatment into the rest of their lives.
• Alternative payment model study. Commissions research to identify gaps in survivorship care, unmet needs, access and reimbursement barriers, and variations in quality and outcomes, with the goal of designing a data-driven payment model.
• Employment assistance program. Creates grants for nonprofit organizations supporting cancer survivors facing workforce challenges, including time off, transportation, and childcare.
• Survivorship progress report. Directs the Government Accountability Office to assess progress under the National Cancer Act of 1971 and evaluate the contributions of the Office of Cancer Survivorship.
• Medicaid coverage for pediatric and adolescent survivorship. Formalizes transition-of-care plans as a Medicaid benefit for childhood and adolescent cancer survivors, so that young people moving from active treatment into the rest of their lives have a documented road map for their ongoing care.
• Medicaid coverage for fertility preservation. Ensures coverage for fertility preservation services under Medicaid for survivors whose cancer treatment may affect their ability to have biological children in the future. For adolescents and young adults, preserving fertility can be a significant quality of life issue that extends far beyond treatment.
• Office of Cancer Survivorship. Places the Office of Cancer Survivorship within the Office of the Director of the National Cancer Institute and provides it the authority to fund survivorship research, support education and communication efforts, and serve survivors, researchers, and the clinicians who care for them. Established in 1996, the Office has never had a statutory foundation. This provision would change that.

Voices from the Conversation

Congresswoman Wasserman Schultz, a breast cancer survivor herself, named the bill for her late friend and constituent Lainie Jones, who survived seven different types of cancer before passing away. “Survivorship must address the aspects of our lives that intersect with our physical and mental health, like education, work, transportation, children, and more,” she said.

Three survivors joined a panel discussion to share what this legislation means in practice. Cierra Morgan, 22, has been living with carcinoid cancer since age 14 and described navigating the transition from pediatric to adult care largely on her own, including figuring out fertility preservation options no one had raised when she was first diagnosed.

“No one really prepared me to be in the adult ward when I turned 18, even though I still felt like a kid.”

— Cierra Morgan, carcinoid cancer survivor, Children’s Cancer Cause

Whitney Neighbors, an eight-year survivor of stage 4 diffuse large B-cell lymphoma, described feeling “adrift” when her oncologist left her treating hospital, never having received a formal survivorship plan, and spending years without clear answers about whether her ongoing symptoms were treatment-related.

“It’s time for phase two of cancer treatment: research and support for diagnosing and treating long-term side effects and early detection for secondary cancers.”

— Whitney Neighbors, stage 4 diffuse large B-cell lymphoma survivor,
Lymphoma Research Foundation

Daria Ross, a seven-year triple negative breast cancer survivor and public health professional, shared discovering years after treatment that the neuropathy causing her to fall was a long-term effect of chemotherapy. She learned it not from a doctor, but from a conversation with other survivors at a Cancer Nation summit.

“Once you are in this club of cancer survivorship, everything that your body does, you’re reacting to. That never goes away. Having a survivorship care plan as a guide, as a compass, would be so tremendous.”

— Daria Ross, triple negative breast cancer survivor, Cancer Nation

All three emphasized that self-advocacy should not be a prerequisite for good survivorship care, and that marginalized communities face the steepest barriers.

How to Take Action

• Contact Your Representatives and ask them to co-sponsor the Lainie Jones Comprehensive Cancer Survivorship Act. Visit house.gov to find your member’s office and phone number, or call the Capitol switchboard at (202) 224-3121. When you call, identify yourself as a constituent, name the bill and its House bill number (H.R. 8839), share your personal connection to cancer survivorship, and make a direct ask for co-sponsorship.
• Sign-On as an Endorser: If you are a national nonprofit organization, medical center, or medical professional society, please consider signing on in support of the bill. Sign On Here (Google Form)
• Spread the Word: Download and share our CCSA Social Media Toolkit to help raise awareness and amplify support for the CCSA. Whether you are an advocate, organization, or community partner, this ready-to-use resource makes it easy to share information and encourage support for the bill. The toolkit includes handles, hashtags, sample posts, and a link to a graphics template to get you started.
  CCSA Social Media Toolkit

About the Speakers

Sue Emmer

Sue founded Emmer Consulting (which later became I Street Advocates) in 1999. In that time, she has carved out a reputation as a health expert who advocates for non profit clients representing hospice, long term care, child cancer survivors, and people living with Alzheimer’s.

Sue started her career on Capitol Hill where she quickly rose to senior advisor positions. From 1988 to 1994, Sue served in key roles on Capitol Hill. She was a Legislative Assistant for Senator Don Riegle who served on the Senate Finance Committee. Prior to that time, she was a Legislative Assistant for Senator Bob Graham. After leaving Capitol Hill, Sue served as a health policy analyst at the Department of Health and Human Services Assistant Secretary for Legislation (ASL) office for two years.

From 1996 until September of 1999, Sue was an associate at Foley and Lardner, LLP one of the nation’s largest law firms where she served in both the government affairs and health care practice groups. During her tenure, Sue helped grow and develop a new government affairs practice.

Sue received her J.D. from The Georgetown University Law Center and her B.A in history, from Brown University, where she was a varsity tennis player. Sue is a member of the Health on Wednesday (HOW) organization, a Washington, D.C. based organization of women in Washington that represents the interests of health professionals and trade associations.

Meghan Gutierrez

Meghan Gutierrez is the Chief Executive Officer of the Lymphoma Research Foundation, the nation’s largest nonprofit organization devoted to funding lymphoma research and education, advancing both the study of new cancer therapies and improved patient care.

An expert in government relations and health care policy, Gutierrez has pursued an array of public policy issues during her career, ranging from mental health parity and rare disease awareness to medical technology and the treatment of chronic disease. Following her work as a Congressional staff member for one of the U.S. House of Representatives’ foremost leaders on health care policy, she served as a health policy and communications advisor for several national nonprofit and educational institutions, including Columbia University and the Partnership for a Drug-Free America.

Gutierrez joined the Lymphoma Research Foundation in 2008 as its chief program, policy and communications officer. She was a driving force behind programs such as the country’s only Adolescent and Young Adult Lymphoma Initiative and development of the first mobile app for people with lymphoma. She became Chief Executive Officer in 2014. In this role Gutierrez represents the Foundation before several audiences, including the U.S. Congress, Department of Defense, Food and Drug Administration and National Institutes of Health. She has written and lectured extensively about the needs of lymphoma patients and served on committees and panels of the American Society of Clinical Oncology, American Society of Hematology, Institute of Medicine, and National Cancer Institute, among others.

Cierra Morgan, MS

Cierra Morgan is a childhood cancer survivor, and advocate who is passionate about using storytelling to create connection and change. After being diagnosed with carcinoid cancer as a teenager, she learned firsthand how life-changing a strong support system can be and how important it is for patients and families to feel seen, heard, and understood.

A graduate of the University of Southern California, Cierra studied Journalism and Health & Human Sciences, combining her love of writing with her interest in healthcare and patient advocacy.

Throughout her journalism career, Cierra has reported on health, education, and public policy issues for outlets including the Los Angeles Times, The Washington Times, and USC Annenberg Media. She has also written for The Children’s Cancer Cause, where she interviewed survivors and families and explored topics ranging from mental health to long-term survivorship care.

Whether she’s reporting a story, mentoring a young patient, or speaking about her own journey, Cierra believes in the power of sharing experiences to help others feel less alone.

In the fall Cierra will begin pursuing her Juris Doctor at Suffolk Law School in Boston, where she hopes to build on her experiences as a survivor, journalist, and advocate.

Shelley Fuld Nasso, MPP

Shelley Fuld Nasso, MPP, is CEO of Cancer Nation—the voice of the 18 million Americans living with, through, and beyond cancer. Under her leadership, Cancer Nation (formerly the National Coalition for Cancer Survivorship) pushes for bold policy change to ensure every survivor has the right to not just survive—but thrive. From Capitol Hill to cancer centers, Shelley elevates survivor voices and demands care that actually works for the people living it.

A defining part of her work is helping survivors and caregivers find their voice in the democratic process—whether it’s their first visit to Capitol Hill or telling their story to someone in power. Through advocacy training and deep community-building, she empowers people to speak out, be heard, and help shape the policies that shape their lives.

Before joining Cancer Nation in 2013, she led public policy initiatives at Susan G. Komen. She holds degrees from Rice University and the Harvard Kennedy School. Shelley’s advocacy is deeply personal—rooted in love for her friend Dr. Brent Whitworth, a compassionate physician who died of cancer at 43, and in solidarity with countless others in her life affected by cancer.

She lives in Maryland with her husband and three sons. When not pushing for a cure for care, she’s likely found on a paddleboard, in a yoga class, or solving a crossword.

Whitney Neighbors

Lymphoma Touch Points

• Survivor, Diffuse Large B Cell Lymphoma, 2018
• Lymphoma Research Foundation, Board of Directors, Member (2025)
• Serve as Chair of Lymphoma Epidemiology of Outcomes (LEO) Participant Advisory Council; M.D. Anderson Cancer Center delegate, Lymphoma and Myeloma Clinic Houston, Texas (2022 to present)
• Author, Multiple Patient Advocate Letters for support of Academic and Clinical Hematology Oncology Research Grant Submissions
• Texas Gulf Coast Chapter Blood Cancer United, Member of the BCU Executive Challenge Team and Legislative Advocacy Team
• Avid Fundraiser for Blood Cancer Organizations

Personal and Professional

• Licensed Attorney in the State of Texas, 2001
• Married and have one son

Daria Ross, MPH

Daria L. Ross is a breast cancer survivor, advocate, and community leader from Flint, Michigan. Diagnosed in 2018 with Stage 2 Triple-Negative Breast Cancer, she turned her experience into a mission to educate, empower, and advance health equity. Now a seven-year survivor, Daria champions patient education, peer support, and reducing disparities in cancer care, guided by her daily affirmation, #FaithOverFear.

She serves on the American Cancer Society’s Making Strides Flint Volunteer Leadership Committee, is a VOICES for Black Women Ambassador, and an ANGEL Advocate with the Tigerlily Foundation. As Board Chair of Girls With Knowledge, Inc., she supports initiatives that equip youth and address social, cultural & economic disparities, and, as a 2022 Elevate Ambassador with Cancer Nation, she developed advocacy and survivorship tools to support breast health and participation in clinical trials.

Beyond advocacy, Daria co-leads The Calla Lily Assignment, an event design business with her aunt, P.J., dedicated to creating memorable, story-driven experiences. She holds a Bachelor’s degree in International Relations (Magna Cum Laude) from Central Michigan University and a Master of Public Health, Population and Health Sciences from the University of Michigan, with a certificate in Health Behavior & Health Equity.

Steve Wosahla

As the Chief Executive Officer of Children’s Cancer Cause, Steve is responsible for the strategic management and operations of the nation’s preeminent childhood cancer policy organization.

Steve identifies and advances issues that will improve the treatment and lives of childhood cancer patients and their families with Congress, the Administration, federal agencies and state governments. He is also responsible for ensuring that families have the opportunity to participate as advocates in the policy process.

In his three decades of executive leadership at health organizations and nonprofits, including positions with the American Diabetes Association, HopeLink, and the National Multiple Sclerosis Society, Wosahla has demonstrated steady, effective leadership and an aptitude for creating value-added partnerships. Prior to joining the Children’s Cancer Cause in 2020, Wosahla served as Vice-President of Corporate Alliances & Solutions for the American Cancer Society.

Steve can be contacted on any questions concerning organizational management, public policy positioning or program development.

The post The Right to Thrive: A Conversation on the Lainie Jones Comprehensive Cancer Survivorship Act appeared first on Cancer Nation (Formerly NCCS).

In our most recent Survivorship Survey, Cancer Nation asked cancer survivors about their employment status and attitudes toward work. Most respondents said they either must work or want to work after diagnosis and during treatment. Those who cannot work are physically unable to do so, not unwilling. This week, the Centers for Medicare & Medicaid Services (CMS) issued an Interim Final Rule setting the standards for Medicaid expansion states to implement Medicaid work requirements. The rule would set an unreasonably burdensome standard for cancer survivors to prove they are medically frail and that their disease or condition prevents them from working. This standard is also unnecessary because cancer patients are not defrauding the system. Instead, they are working, if at all possible, out of necessity or preference.

The Interim Final Rule ignores the needs of people with cancer and other serious and complex illnesses and puts many of them at risk of losing their Medicaid coverage at a time when they need it most.

CMS established a definition of medical frailty that is at odds with states’ initial expectations and we believe at odds with the law. Under the rule, individuals would be required to prove that they are medically frail and then that their condition prevents them from working. In addition, self-declaration would be permitted only for one year.

Beginning in 2028, states would be limited in accepting self-attestation. At that time, people with cancer would be confronted with serious challenges of documenting their condition and inability to work. They would also be asking overburdened clinicians to assist them in the documentation effort instead of relying on their care teams for life-saving care.

Cancer care must be delivered without delay. We do not believe that policymakers intended work requirements to deprive cancer patients of the care they need because they lose Medicaid coverage or to force serious delays in care because of an overly burdensome documentation process.

We will be directing our attention and energy to explaining to policymakers the harm that the interim final rule may cause families, given that 1 in 3 American children with cancer and 1 in 10 Americans with cancer overall depend on Medicaid for their cancer care. We will also convey what we know – cancer patients are not defrauding the health care system. We look forward to changes in this rule that are responsive to the needs of people with cancer and other serious diseases and that give states more flexibility in implementing work requirements.

# # #

The post Cancer Nation Statement: Medicaid Work Requirements Will Unfairly Burden Cancer Survivors appeared first on Cancer Nation (Formerly NCCS).

In this educational webinar, clinical expert Dr. Suzanne Fuqua, policy expert Jennifer Leib, and Dr. Kelly Shanahan, an advocate living with metastatic breast cancer, walk through how this testing works, what it can (and can’t) tell us, and how it’s being used across cancer types. We also talk about the real-world challenges—including gaps in insurance coverage and access—that can make it harder for people to benefit from these advances.

Following the speakers’ presentations, Cancer Nation CEO Shelley Fuld Nasso moderates a discussion that includes questions from the audience of patients, advocates, and professionals.

Watch the webinar below or here on YouTube.

Video Chapters and Resources

Webinar Chapters:

• 00:00 Introduction
• 02:07 What can this testing do currently?
• 05:14 Clinical & Research Background
• 10:05 Testing Styles & Continuing Research
• 15:47 Why blood-based testing matters for patients.
• 25:00 Policy Introduction
• 27:08 How Medicare determines coverage
• 31:23 Coverage Examples
• 35:46 CancerDx Access Alliance
• 37:57 Q&A: AI Use in Blood-Based Testing
• 40:07 What are the biggest benefits?
• 44:02 Research Funding Challenges
• 47:38 How can we advocate for coverage?
• 50:51 How do patients receive the results?
• 54:05 Are private insurers covering this?
• 55:32 How can patients ask to get this testing?

Webinar Slide Decks:

• Suzanne Fuqua, PhD: Understanding Blood-Based Testing in (Breast) Cancer Care (PDF)
• Jennifer Leib: Medicare Coverage of Precision Oncology Diagnostics (PDF)

This webinar is presented by Cancer Nation, and supported by an unrestricted educational grant from Guardant Health.

Suzanne A.W. Fuqua, PhD

Suzanne Fuqua is a Professor of Medicine and Molecular Biology at the Baylor University College of Medicine. The main goal of her research is to determine the role of specific somatic mutations in estrogen receptor alpha, called K303R and Y537N, in the clinical problem of hormone resistance. Dr. Fuqua was the first to discover alternatively spliced transcriptional isoforms and somatic mutations in breast tumors. She has determined that the K303R mutation alters many aspects of hormone action, including binding to co-regulatory proteins, enhanced stability, estrogen hypersensitivity, response to tamoxifen, and resistance to the aromatase inhibitor anastrozole. Her team discovered the Y537N mutation, a constitutionally active receptor in metastatic tumors. A major goal of her laboratory is to develop novel therapeutics to target these alterations in ER alpha to restore hormone sensitivity, as well as to identify other novel mechanisms of resistance.

Dr. Fuqua has bachelor’s and master’s degrees from the University of Houston. She received a PhD in Cancer Biology from the University of Texas Graduate School of Biomedical Science. She is a Professor of Medicine and Molecular and Cellular Biology at Baylor College of Medicine.

Kelly Shanahan, MD

In 2008, Kelly Shanahan had everything going for her: a busy and successful ob-gyn practice; a precocious 9 year old daughter; and a well used passport from traveling all over the world with her family to attend conferences, with a liberal dose of vacation on the side. When she was diagnosed with stage IIB breast cancer, she considered it a mere bump in the road.

And for five years, breast cancer was an aside, something to put in the past medical history section of forms. Even when she developed sudden back pain, Kelly never thought it could be breast cancer rearing its ugly head – a pulled muscle, a herniated disc maybe, but not what it turned out to be: metastatic breast cancer in virtually every bone in her body, with a fractured vertebrae and an about to break left femur. Kelly was diagnosed in 2013, on her 53rd birthday.

Neuropathy from the chemo cost her her career, but she has found a new purpose in advocacy. Kelly is the president of the board of directors of METAvivor; a member of the Patient Centered Dosing Initiative; a Komen Advocate in Science; on the symptom intervention committee of the Alliance for Clinical Trials in Oncology; on the emerging toxicities working group of MASCC; and is a grant reviewer and research advocate. Currently on her 6th line of therapy (and 2nd phase 1 clinical trial), she is passionate about getting patients to the table in the design, implementation, and follow up of clinical trials.

Kelly Shanahan is a mother, a wife, a daughter, a doctor, a woman LIVING with metastatic breast cancer.

Jennifer Leib, ScM, CGC

Jennifer Leib founded Innovation Policy Solutions, a government relations firm specializing in genomics and precision medicine policy. Some of her accomplishments include leading the advocacy effort in support of the plaintiffs in the Supreme Court’s unanimous decision in the Association for Molecular Pathology vs. Myriad Genetics Inc. that invalidated gene patents, serving on the Executive Committee of the Coalition for Genetic Fairness which successfully advocated for passage of the Genetic Information Nondiscrimination Act, and assisting companies with navigating the evolving regulatory and reimbursement landscape for diagnostic testing during recent public health emergencies. Previously, Jennifer co-founded another consulting firm, HealthFutures, which was acquired by CRD Associates in 2009. Board certified in genetic counseling, she also worked at the National Institutes of Health, the Senate Committee on Health, Education, Labor and Pensions, and in the biotechnology industry.

The post Webinar – Understanding Blood-Based Testing in Cancer Care appeared first on Cancer Nation (Formerly NCCS).

Susan (Susie) Leigh, BSN, RN-Retired — one of the founding members of Cancer Nation, a five-time cancer survivor, and one of the most influential voices in the history of the cancer survivorship movement has passed away. We are heartbroken, and we are deeply grateful.

Susie did not simply witness the birth of the cancer survivorship movement. She helped build it. In 1986, she joined a small group of determined survivors and allies in Albuquerque, New Mexico, to create the National Coalition for Cancer Survivorship  (now Cancer Nation). Early on, they successfully fought to change the cancer vocabulary from “victim” to “survivor,” and coordinated a network of local and regional groups to distribute resources and build community at a time when cancer was a taboo subject. Susie served as Secretary and later President of the Board of Directors, shaped the Cancer Survival Toolbox^®, and spent decades making sure that survivors were not just spoken about, but heard.

Susie Leigh during her time as NCCS President.

Diagnosed with Hodgkin lymphoma in 1972 at age 24, shortly after returning home from serving as an Army nurse in Vietnam, Susie Leigh found her calling. Her diagnosis drew her toward oncology nursing, and into a career devoted to caring for people living with and beyond cancer. She would go on to survive breast, bladder, and lung cancers as well, each a late effect of her original treatment.

Susie understood cancer from both sides of the bedside. As a survivor, she knew firsthand what happened after treatment ended, and how little attention the system paid to the quality of the life that followed. That experience was the foundation of her advocacy. As she said, “It’s not enough to survive cancer. We also need to address the quality of life after treatment, including possible risk factors for future problems.”

For Susie, that conviction shaped everything. She served on national committees at the National Cancer Institute, the Oncology Nursing Society, and other leading institutions. She introduced survivorship to international audiences in seven countries. She sat on steering committees, mentored advocates, and gave her time to the people who came after her. She served as a member of the Cancer Nation Advocates Steering Committee and a mentor for the Cancer Nation Leadership Academy. She also served as a board member of Hodgkins International.

Susie (center) with seven other co-founding members at the 1996 NCCS National Assembly.

Susie Leigh (center) receives the Stovall Award from Board Members Dr. Ana María Lopez and Dr. Julia Rowland.

Most recently, Susie was honored at Cancer Nation’s Igniting Hope Awards Reception on June 26, 2025, in Washington, DC, where she received the Ellen L. Stovall Award for Innovation in Patient-Centered Cancer Care, a national award recognizing individuals who have made a lasting impact on patient-centered cancer care.

Ellen and Susie were dear friends, so it was fitting for Susie to receive the award. Many of Susie’s friends from her long career in advocacy came to celebrate her. She said afterward that it was a highlight of her life to receive the award and spend time with so many friends.

Susie at NCCS’s THE MARCH in Washington, DC, 1998.

We encourage you to read more about Susie’s extraordinary life and legacy:

• Susie Leigh — Founding a Movement, Shaping the Future — A blog post about her lifetime of accomplishments.
• Bestselling author Judith L. Pearson interviewed Susie extensively for her book about the cancer survivorship movement, From Shadows to Life. Read more about the book and watch a conversation with Susie.
• 2025 Ellen L. Stovall Award Announcement
• Igniting Hope Awards Reception
• Susie was featured in USA Today in 2019: “Life after cancer: More survivors live longer, face new health challenges.”

Susie believed that every survivor has a story, and that every story matters. She spent more than five decades making sure those stories were heard at every level of the health care system in nursing journals, on national committees, at congressional hearings, and in the hearts of the advocates she mentored.

We carry her forward in our hearts and our work every day to demand a cure for care.

The post Remembering Susie Leigh: A Founder, a Force, and a Friend appeared first on Cancer Nation (Formerly NCCS).

After her gallbladder was removed, the abdominal pain didn’t go away. It got worse. She started losing weight. Finally, a GI specialist at the Mayo Clinic in Rochester ordered a series of tests, and it was a chest X-ray that finally showed something: a large mass. A CT scan and biopsy confirmed it. Jessie was diagnosed with nodular sclerosing Hodgkin lymphoma, stage 3a.

Jessie’s Story

She began six months of ABVD chemotherapy, every two weeks. Chemotherapy is hard to describe to someone who hasn’t been through it, and Jessie doesn’t soften it. By month four, the cumulative weight of treatment, the physical toll, the uncertainty, the isolation, had become almost unbearable. She reached a point where she didn’t know what she wanted, only that she wanted it to stop. She has described wanting to quit chemotherapy, and something beyond that, a desire for the whole situation to simply cease.

In that moment, she made a deal with herself. If she finished treatment, she would go back to school to become a physician. She wanted to understand the system that had failed her, and to become the kind of physician who would actually listen.

Chemotherapy was followed by three weeks of radiation. The cancer shrank.

And then she kept her promise.

Medical school was its own undertaking: years of training, residency, the long process of becoming the kind of physician she had needed and hadn’t found. She spent seven years working within a large health care system, and another year and a half at a community health center. Inside that larger system, she tried to build what she knew survivors needed: a survivorship-focused primary care clinic. She ran into too many obstacles to make it happen.

So she built her own practice instead, in North Dakota, from the ground up. She is the doctor and the billing manager, the employer and the administrator, the person who makes the whole thing run. Solo practice ownership is its own endurance test, and she has been passing it while also raising a family and building a nonprofit.

She did all of that. She also never forgot what it felt like to be the patient in the room who wasn’t being heard.

The Turning Point

About ten years after treatment, her oncologist formally discharged her from care. And that’s when another kind of difficulty began. There was no survivorship program. No plan for what came next. No one to tell her which long-term effects to watch for, which screenings to prioritize, or how to explain any of it to her primary care doctor. She was either going to figure it out herself, or teach her own physicians as she went.

Jessie was a doctor by then. She understood medicine. And she was still lost. That is the thing about survivorship care in this country: knowing how the system works does not protect you from the gaps in it.

“The way I was feeling was OK, and it was normal. I had so many emotions during chemotherapy that weren’t really dealt with.”

That is what she wishes someone had told her at 28. It is also the message she now carries into her practice, her advocacy, and the survivorship education she is building for her state.

The Advocacy Work

Jessie serves as an ambassador with Cancer Nation’s Leadership Academy, and she is channeling what she lived through into something concrete.

She founded the North Dakota Cancer Survivorship Foundation, with a vision to create a community survivorship center that brings together primary care, physical and occupational therapy, mental health services, and financial support under one roof. She is currently pursuing grant funding to bring survivorship education to North Dakotans statewide.

Her work connects directly to Cancer Nation’s core policy priorities. She lives the gap in Survivorship Care Plans every day: as a physician who was herself discharged from oncology without a plan, and as a primary care doctor whose cancer survivor patients arrive without one. She understands Whole Person Cancer Care not as a policy abstraction but as the thing that was missing from her own treatment, the emotional support, the honest conversations, the acknowledgment that surviving is its own medical and human challenge.

She is equally plain about what needs to change structurally. As a solo practice owner in a rural state, she sees the collision of survivorship and inadequate insurance coverage every day, and the impact it has on her patients and on herself. Her position on it is unambiguous: “Health insurance should be a utility.”

What’s Next

Jessie’s advocacy is, by her own account, still becoming, but the foundation under all of it is something she earned slowly, over 23 years of survivorship, of practicing medicine, of watching patients arrive without care plans and leave without enough support. The survivorship center is not yet built. The grant is not yet funded. But the foundation is there, rooted in a specific kind of knowing that only comes from having been the survivor who needed what didn’t exist.

What she wants other survivors to know is not complicated: what you are feeling is normal. It is correct. Whatever it is. And there are people working to make sure you don’t have to find that out alone.

Want to get involved in cancer advocacy?

Learn more about Cancer Nation Advocates and join for free. »

The post From Diagnosis to Doctor: When No One Was Listening, Jesse Lindemann, MD, Became the Doctor She Needed appeared first on Cancer Nation (Formerly NCCS).

Tremendous progress has been made in the fight against cancer, with new life-saving treatments available for many, earlier detection improving, and smoking rates declining.  That progress means that 18 million Americans are living with, through, and beyond cancer.  The Comprehensive Cancer Survivorship Act answers meets that moment with meaningful solutions, from coverage of care planning and complex cancer care coordination to employment assistance to a payment model that rewards quality survivorship care.

For 40 years, Cancer Nation has fought for a simple but powerful idea: cancer survivors deserve the chance not only to survive, but to thrive. This bill makes that possible, and we are proud to stand with Representatives Wasserman Schultz, Fitzpatrick, DeSaulnier, and Wilson in demanding it.

Cancer Nation also extends special appreciation to Representative Wasserman Schultz, herself a cancer survivor, for her extraordinary leadership and unwavering commitment to listening to survivors, elevating their voices, and advancing solutions that reflect the realities of life after cancer.

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The post Cancer Nation Applauds the Introduction of the Lainie Jones Comprehensive Cancer Survivorship Act appeared first on Cancer Nation (Formerly NCCS).

We’re changing the name — and expanding the mission.

This is more than just a new name; It’s how we drive change.

For years, Elevating Survivorship brought advocates together to turn lived experience into community-based action. We trained and mentored Elevate Ambassadors and supported their community projects.

What we knew to be true was confirmed again and again:

The health care system won’t change unless all of us — survivors, caregivers, and health care professionals — come together to demand something better.

That’s why the Cancer Nation Leadership Academy needs to exist. We’re building a network of leaders across communities and care settings who are ready to fix what’s broken.

Cancer Nation Ambassadors will drive change through:

• Cross-community leadership
  Survivors, caregivers, and health care professionals learning and leading side-by-side.
• Collective action
  Not just ideas, but the tools to change care in clinics, communities, and policy.
• Real transformation
  Confidence, connection, and shared power to lead change.

What’s New?

The Cancer Nation Leadership Academy builds on everything we learned from Elevating Survivorship and expands it into something bigger.

The Leadership Academy:

• Trains leaders in advocacy and systems change.
• Builds a shared language between lived experience and clinical care.
• Equips our community to push for better policy and better care.
• Launches projects that move us closer to a Cure for Care.

This is where Cancer Nation Ambassadors become catalysts for change to reshape care.

The 2025 class of Cancer Nation Ambassadors and staff at an in-person training.

Interested in becoming a Cancer Nation Ambassador?

We’re opening the doors to the next generation of leaders — survivors, caregivers, and health care professionals ready to turn lived experience into action — because this is how we get closer to a Cure for Care.

We’ll soon open 2026 Cancer Nation Leadership Academy applications. Subscribe to Cancer Nation updates to be the first to hear about it.

Learn more about the Leadership Academy and see how Cancer Nation Ambassadors are making a difference in their communities.

We are Cancer Nation. And we are here to be heard.

The post Introducing The Cancer Nation Leadership Academy appeared first on Cancer Nation (Formerly NCCS).

Advocate Spotlight: Tom Warren

In January 2019, Tom Warren’s life changed in a matter of weeks.

At 63, he was still working, still planning for the years ahead. Then a small mark on the side of his nose, first noticed by his spouse, Janet, led to a diagnosis that would upend everything: angiosarcoma, a rare and aggressive cancer with an average survival rate of just three years.

Within days of his diagnosis, his care moved at a pace few are prepared for. What followed wasn’t a single moment of crisis. It was years of treatment, recovery, and adaptation. By the end of that month, he underwent a 12-hour surgery to remove a five-centimeter tumor and begin reconstructing his face. Then, nearly 30 rounds of chemotherapy, 50 rounds of proton therapy, and multiple surgeries to address complications.

And in 2022, the loss of his left eye.

Today, Tom has no evidence of disease. “I’m a cancer survivor, something that, statistically, I was never expected to say six years after my diagnosis,” Tom shares. But as so many in our community know, survivorship is not a finish line, but a new reality, and one that brings its own set of challenges, questions, and unknowns.

“When you outlive your prognosis, you enter a space with few roadmaps,” he said. “The long-term effects of treatment don’t disappear; in many ways, they become part of your daily life.”

Tom knows that reality firsthand, living with lasting side effects from treatment, like fibrosis, neuropathy, and something harder to measure: the loss of identity. Tom shared that changes to his appearance mean people don’t always recognize him, and the career he once held, and the purpose it gave him, is no longer part of his daily life.

And yet, his story is not defined by what was lost. It is shaped by what came next.

Finding Purpose in the Aftermath

For Tom, survivorship became not just something to navigate, but something to make sense of.

He credits his spouse, children, grandchildren, friends, and community as essential to getting through the hardest moments. Meals showed up. Rides were arranged. People sat with him when there wasn’t anything to fix. It was steady, everyday support, the kind that carries you when you don’t have much left to give.

That experience stayed with him. Not just the care he received, but what it meant to be supported in a moment when everything had changed.

“That experience led me into advocacy,” he said. “Which has been a journey, one where I am still finding my footing.”

Tom began with A Fresh Chapter, first as a participant learning to advocate for himself, and later mentoring others in the program. It was a shift into the role of advocate, not all at once, but enough to open a door.

“That experience helped me feel valued again at a time when I was searching for a renewed sense of purpose.” Advocacy didn’t arrive as a clear role or identity. It built over time, through conversation, through connection, through showing up for others who were trying to find their way, too.

A Place to Be Heard

Through that community, Tom was introduced to Cancer Nation.

What started as a connection became an opportunity to share his story, to speak on behalf of other survivors, and to step into a new kind of leadership.

“Shelley and her team are doing meaningful, impactful work, and they’ve given me a space to begin building a new identity,” he shared.

While Tom is quick to say he’s still figuring out where he fits, his presence reflects something deeper about what advocacy really is and who it belongs to.

“The advocacy space includes many highly credentialed individuals from fields like law, medicine, insurance, and education,” he said. “My background is as a business leader, and I’m working to understand how I can best use that experience to serve the community I’m now part of.”

Tom Warren talks with Cancer Nation CEO Shelley Fuld Nasso at the Fall 2025 Cancer Nation Policy Roundtable (Photo by Leslie Kossoff/LK Photos)

Defining Advocacy

Ask Tom what advocacy means, and his answer doesn’t start with policy. It starts with the individual.

“Advocacy begins with supporting yourself; learning to speak up, ask questions, and take an active role in your care,” he said.

From there, it grows.

It becomes sharing knowledge. Supporting others. Helping someone else feel less alone in a system that often leaves people to figure things out on their own.

This matters. Because we know from our 2025 Survivorship Survey that too many survivors are navigating care without the support they need—emotionally, financially, and practically. Many feel unprepared for what comes after treatment. Many are still searching for answers.

Tom’s perspective speaks directly to that gap.

“What we learn and what we share matters,” he said. “It has the power to help those who come after us, people who will need guidance, understanding, and a voice.”

This is how change happens. Not just through systems, but through people willing to show up and speak.

Tom’s story is a reminder that advocacy is not reserved for experts. It is built by people with lived experience—people willing to turn what they’ve been through into something that helps others.

“Anyone who has been on the cancer path has something valuable to offer,” he said.

And for those shaping policy and care systems, his message is just as clear: listen.

“At the center of this work is something essential: listening to patients,” Tom shared. “Hearing directly from those who have lived through cancer is critical to shaping what comes next and ensuring that advocacy efforts truly reflect the needs of the community.”

We couldn’t agree more.

Because a cure for care doesn’t happen in theory. It happens when real experiences shape real decisions, and when the voices of survivors are not just included but prioritized.

Living Forward

Today, Tom’s life looks different than he once imagined.

He spends his time fishing, golfing, hiking, and most importantly, being present with his family.

There is joy in that. There is meaning in that.

But there is also something else: a recognition that survivorship is not the end of the story.

“I may be an outlier in terms of survival,” he said, “but my experience highlights something universal: surviving cancer is not the end of the story. It is the beginning of a new one, one that requires resilience, adaptation, and, above all, connection.”

Want to get involved in cancer advocacy?

Learn more about Cancer Nation Advocates and join for free. »

The post Outliving the Odds, Rewriting the Path: Tom Warren’s Story of Survivorship and Advocacy appeared first on Cancer Nation (Formerly NCCS).

Dr. Graff, Director of Clinical Research at Mission Cancer and Blood in Iowa, breaks down common symptoms and side effects, how treatment may feel day to day, and how to communicate clearly and confidently with your care team. She also discusses what survivorship may look like after treatment and what questions patients and caregivers may want to ask along the way.

Following Dr. Graff’s presentation, Cancer Nation CEO Shelley Fuld Nasso moderates a Q&A session that includes questions from the webinar audience of patients, advocates, and professionals.

Watch the webinar below or here on YouTube.

Video Chapters and Resources

Webinar Chapters:

• 00:00 Introducing Dr. Tara Graff
• 01:39 Why this topic matters
• 03:21 What are Bispecific Antibodies? When are they used?
• 05:02 Bispecifics in Lymphoma & Myeloma
• 09:47 Patient Clinical Journey, Consensus Guidelines
• 14:29 Reported Side Effects, Toxicities
• 18:37 Clinical Side Effect Mitigation
• 21:24 What patients & caregivers can expect, common questions
• 27:36 Infection Risk, Late Toxicity
• 29:20 Resources & Education for Patients
• 31:00 Q&A
• 31:43 Providing Bispecifics in communities vs. cancer centers
• 37:26 What are the responsibilities for caregivers?
• 41:06 Bispecifics Clinical Trials of other cancer types
• 42:39 Survival rate discussion
• 45:05 Where do bispecifics fit among other treatment options?
• 48:54 How do you monitor for side effects?
• 53:29 How do your patients compare this treatment with others?

Related Resources:

• Webinar Slide Deck: Bispecific Antibodies in Cancer Care
• From the journal Blood: Consensus recommendations on the management of toxicity associated with CD3×CD20 bispecific antibody therapy (co-written by Dr. Graff)
• Blood Cancer United (LLS): www.bloodcancerunited.org
• Lymphoma Research Foundation: www.lymphoma.org
• International Myeloma Foundation: www.myeloma.org
• CancerCare: www.cancercare.org
• National Cancer Institute: www.cancer.gov

This webinar is presented by Cancer Nation, and supported by an unrestricted educational grant from Genmab.

About Tara Graff, DO, MS

Tara M. Graff, DO, MS, first earned a master’s degree in Immunology from Loyola University Chicago. After medical school and residency training, she completed her fellowship in Hematology and Oncology at the Medical College of Wisconsin.

For over a decade, she has served patients at Mission Cancer and Blood in Des Moines, Iowa, where she specializes in CLL and NHL. She leads as Director of Clinical Research, playing a integral role in developing the joint clinical trial program with the University of Iowa.

Nationally, Dr. Graff contributes her expertise through multiple leadership positions. She serves on the National Lymphoma Advisory Boards, NHL Advisory Council, LBCL Steering Committee, ECOG’s Clinical Trial Organization, and the CIBMTR Lymphoma Working Committee, and also works with the Lymphoma Research Foundation. She partners with the Leukemia & Lymphoma Society to expand education for rural cancer patients and to train community oncologists on CAR-T and bispecific therapies.

As Principal Investigator on numerous clinical trials and author of many peer-reviewed publications, Dr. Graff has helped advanced care for patients with lymphoma. She is also the Executive Director of the Cellular Therapy Program at Exigent Research, where she chairs the Malignant Hematology Council. Through Exigent and her own initiatives, she has helped operationalize bispecifics across more than 20 community sites nationwide.

The post Webinar – Bispecific Antibodies in Cancer Care: What to Know, What to Expect appeared first on Cancer Nation (Formerly NCCS).

Diagnosed with Hodgkin’s lymphoma at age 15, Erin lived more than 50 years with and beyond cancer. The treatments that saved her life as a teenager also shaped the rest of it — thyroid cancer, heart surgery, lung disease, infertility, and ultimately stomach cancer. She carried the long arc of survivorship in her own body.

Erin understood surviving cancer is not the end of the story. It is the beginning of a lifelong relationship with our health, our uncertainty, and a health care system that too often isn’t built for the long haul. Instead of shrinking from that reality, Erin stepped into it.

Erin founded Hodgkin’s International so long-term survivors wouldn’t feel alone navigating late effects. When she joined the inaugural cohort of Cancer Nation Ambassadors, she joined because she believed survivors are stronger together. She often said Cancer Nation’s Elevate program helped her sharpen her voice and expand her reach, and she used that momentum to take Hodgkin’s International to the next level.

She brought survivors and clinicians into the same room. She showed up on Capitol Hill. She spoke with clarity and conviction about better coordination, survivorship planning, and real financial protections. She believed survivors deserve more than gratitude, that we deserve care that sees the whole person.

Erin meets with Rep. Mark DeSaulnier, the Co-Chair of the Congressional Cancer Survivors Caucus during a Cancer Nation Hill Day.

“Erin left an indelible footprint on the cancer advocacy community,” said Cancer Nation CEO Shelley Fuld Nasso. “With more than 50 years of survivorship, she was a passionate advocate for helping cancer survivors live well after their cancer diagnosis, and she helped and inspired so many people.”

“We as survivors strive to build a legacy and create meaning out of hardship,” said Veronika Panagiotou, Cancer Nation Director of Advocacy & Programs. “We hope that it will change the cancer community while we are here and it will allow us to be remembered when we are gone. Erin built a legacy through Hodgkin’s International that will continue to change the trajectory of cancer care for years to come. Her passion is alive in us and we will keep her memory alive by serving others in her honor.”

Erin ran marathons. She raised funds for pediatric cancer research. She poured her heart into motherhood. She walked by the ocean. She painted. She listened. She made people feel seen.

Even in the face of unimaginable health challenges, Erin chose connection. She chose advocacy.

Erin once said that advocacy gave her voice. The truth is she gave voice to countless others.

Cancer Nation is grieving with Erin’s family and with the global community she built. We grieve as friends. As partners. As fellow survivors.

Erin helped build this movement. We will carry it forward.

# # #

A public memorial will be held to honor Erin’s life. Details will be announced at this link. Loved ones can also submit a remembrance of Erin here.

Read more about Erin’s life and work in our previously published Advocate Spotlight, “Erin Cummings’s Journey as a Long-Term Hodgkin’s Lymphoma Survivor.”

The Vineyard Gazette published an obituary for Erin here.

Learn more about Hodgkin’s International at hodgkinsinternational.com.

Erin with her family

The post Remembering Erin Cummings, A Passionate Advocate for Survivors and Founder of Hodgkin’s International appeared first on Cancer Nation (Formerly NCCS).