Desa-Rhea is a two-time cancer survivor and an oncology data specialist. She was diagnosed with hepatoblastoma in 1991, before she was old enough to remember it. Decades later, as a young adult in graduate school with a young son at home, she was diagnosed with thyroid cancer.

Cancer survivorship has been part of nearly her entire life. For much of that time, she did not have the information, guidance, or support to know what to expect next.

A Childhood Cancer Survivor Who Never Knew Life Before Cancer

Her mother noticed first. Desa-Rhea was unwell, and her stomach was quite enlarged. Hepatoblastoma was considered rare then. Treatment meant removing a portion of her liver, followed by chemotherapy. She was granted a wish through the Make-A-Wish Foundation, and her family went to Disney World.

Desa-Rhea was too young to remember much of that time herself. But one fact has shaped how she understands her life as a survivor.

“I never had the privilege of knowing what life looked like before my diagnosis.”

Her second diagnosis came when she was old enough to understand what was happening — and to be afraid. She was earning her graduate degree, working, and raising her son. She went in and out of the emergency room trying to understand why she kept feeling so unwell. Months passed with fatigue, brain fog, and overall malaise before a provider finally called.

“She took a deep breath and said, Desa-Rhea, I believe you have cancer in your thyroid, and you need to get evaluated right away,” she recalls.

That conversation, she says, will live with her forever.

Treatment felt complicated. There was a partial thyroidectomy, then a complete one. Then radiation therapy, including several days when she could not be around anyone at all. Desa-Rhea remembers being so scared.

Years earlier, when Desa-Rhea was 19, a physician had been able to palpate a nodule in her neck. No one explained to her what that could mean. She believes her thyroid cancer could have been caught much earlier.

From Behind the Screen: How Desa-Rhea Jefferson Became a Cancer Advocate

Professionally, Desa-Rhea works in the cancer registry field as an oncology data specialist, mentoring and handling data collection and quality control for local hospitals and a central registry.

Then she saw a LinkedIn post about Cancer Nation and decided to apply for a scholarship to attend the Cancer Nation Summit. The Summit was her first experience with advocacy. Hill Day was her first time meeting with policymakers.

“This was hands-on, real-time advocacy, and while I was a bit intimidated, I felt prepared by our sessions and just the insight from other attendees,” she says.

Desa-Rhea and a group of advocates from Pennsylvania met with Rep. Dave McCormick (center) to advocate for the Comprehensive Cancer Survivorship Act.

Everyone she met there, she says, changed something in her. She now has what she calls the advocacy bug.

The experience also showed her that speaking up could lead somewhere. The offices she met with followed through on what they said they would do.

“It made me feel like my voice actually mattered,” she says.

What Cancer Survivors Need After Treatment Ends

Ask Desa-Rhea what stood between her and quality cancer care, and she does not start with insurance. She starts with silence.

As a childhood cancer survivor becoming an adult, she had no navigation, no education about long-term effects, and no structured handoff from pediatric care to adult care. She was left with unanswered questions and no one assigned to answer them.

When the second diagnosis arrived, she again found herself without the guidance she needed. She met with providers, but she cannot recall a single person who sat down with her to explain what to expect. She had questions about the financial impact, taking time away from school, and supporting herself as a young woman who had now experienced cancer twice.

A Survivorship Care Plan is intended to provide survivors with information about the treatment they received, what to watch for, who is responsible for follow-up, and what comes next. Desa-Rhea went through both transitions without that kind of plan.

She also searched on her own for ways to address symptoms she says resonate all too well with childhood cancer survivors. She turned toward eastern medicine and the natural sciences, including talk therapy, sound medicine, homeopathy, acupuncture, food, water, and movement. She is careful about how she frames these approaches: for her, they are not replacements for conventional medicine but complements to it.

“I had to learn through trial and error how important it is to have more than one tool in my resource box,” she says.

She believes people should consider modalities that complement conventional care, survivor or not. Her experience also shows why whole person cancer care matters. Her needs extended beyond treating cancer itself, and she had to seek out much of that additional support on her own.

Her Message to Survivors and to Policymakers

To survivors who are newly diagnosed or newly in survivorship, Desa-Rhea encourages them to celebrate themselves and care for themselves to the best of their ability. “Laugh often,” she says. “Acknowledge that it is hard, but do not stay there. And always advocate for yourself.”
Her message to policymakers focuses on what happens after treatment ends.

“Survivors need fast, reliable access to services,” she says, along with help returning to the workforce, academics, and family life. “Not every survivor finishes treatment with the same physical, mental, emotional, or financial capacity they had going in. Finishing treatment does not mean those needs disappear.”

“Not every life is a straight path,” she says.

Desa-Rhea’s experience is part of why we advocate for Whole Person Cancer Care, Survivorship Care Plans, and Financial Protections. Survivorship begins at diagnosis and continues for the balance of a person’s life. The care and support survivors need must recognize that reality, too.

Want to turn your experience into action, the way Desa-Rhea has?

Desa-Rhea started with a single LinkedIn post and a scholarship application. Learn more about Cancer Nation Advocates and join for free. »

Frequently Asked Questions

What is it like to be a childhood cancer survivor as an adult?

Childhood cancer survivors often reach adulthood carrying late effects from treatment they received before they were old enough to consent to it or remember it. Many, like Desa-Rhea Jefferson, are at elevated risk for a second cancer. The transition from pediatric oncology to adult care is a common gap: young survivors are frequently discharged from pediatric care without a clear handoff, without a record of what they received, and without anyone tracking their long-term risks.

What is a Survivorship Care Plan and who should have one?

A Survivorship Care Plan is a written summary of the cancer treatment a survivor received, along with a schedule for follow-up care, the late effects to watch for, and clear assignment of who is responsible for monitoring what. Every survivor should receive one at the end of active treatment. In practice, most do not. Cancer Nation advocates for Survivorship Care Plans to be a standard, reimbursed part of cancer care rather than an optional extra.

What is Whole Person Cancer Care?

Whole Person Cancer Care means treating the whole survivor, not just the tumor. It includes physical health, mental health, financial stability, employment, education, family life, and the supportive and complementary services that help survivors function day to day. It is one of Cancer Nation’s three policy priorities, alongside Survivorship Care Plans and Financial Protections.

How can cancer survivors get involved in cancer advocacy?

Most advocates start with no policy background at all. Cancer Nation Advocates is a program for people interested in improving cancer care, which prepares survivors and caregivers to speak with legislators, share their experience effectively, and understand the policy landscape. Desa-Rhea Jefferson attended the Cancer Nation Summit on a scholarship, then went to Hill Day for the first time. Learn more about Cancer Nation Advocates and join for free. »

What does Cancer Nation do for cancer survivors?

Cancer Nation, formerly known as National Coalition for Cancer Survivorship (NCCS), advocates for quality cancer care for all people touched by cancer. Founded in 1986, we represent 18 million+ people living with, through, and beyond cancer. We define a survivor as anyone from the point of diagnosis for the balance of their life, including caregivers.

The post Ringing the Bell Is Not the Finish Line: Desa-Rhea Jefferson on What Cancer Survivors Need Next appeared first on Cancer Nation (Formerly NCCS).

• • Erin Geddis Cummings, MSW, LCSW — Patient Advocate Award, awarded posthumously
  • Bradley J. Zebrack, PhD, MSW, MPH — Health Care Professional Award

The Stovall Award carries forward the legacy of former CEO Ellen L. Stovall, a three-time survivor and visionary leader who believed that lived experience belongs at the center of care and policy. It is the only national award that recognizes people who have made a lasting mark on how patient-centered cancer care is delivered. Each year, Cancer Nation presents the award to one health care professional and one patient advocate who exemplify Ellen’s vision. The health care professional award is co-presented by the American Society of Clinical Oncology (ASCO). Awardees are selected by a committee of health care professionals, survivors and caregivers from a highly competitive pool of nominees.

“Erin Cummings and Bradley Zebrack represent the very best of patient-centered cancer care and advocacy. Bradley has devoted his career to understanding and improving the experience of people living with and beyond cancer, while Erin turned her own decades-long experience as a survivor into a powerful commitment to helping others. Both have helped ensure that the voices and needs of survivors remain at the center of cancer care, and we are proud to honor them with the Ellen L. Stovall Award.”

— Shelley Fuld Nasso, CEO, Cancer Nation

We will celebrate Erin and Bradley at Cancer Nation’s 40th Anniversary Gala on November 13, 2026, in Washington, D.C., alongside Michael Milken, recipient of our inaugural March Forward Award.

Learn More and Get Tickets »

Meet the Awardees

Erin Geddis Cummings, MSW, LCSW

Patient Advocate Award

“Few individuals have transformed a field as profoundly as Erin Geddis Cummings transformed Hodgkin lymphoma survivorship.”

— Sophia K. Smith, PhD, MSW, FAOSW, Chair, Hodgkin’s International, and
Kevin C. Oeffinger, MD, FASCO, Duke Cancer Institute

Erin Geddis Cummings, MSW, LCSW, will be honored posthumously with the 2026 Ellen L. Stovall Patient Advocate Award. Erin lived more than 50 years with and beyond Hodgkin lymphoma and built that lived experience into a life’s work supporting long-term survivors around the world.

In 2016, Erin co-founded Hodgkin’s International, a licensed clinical social worker’s answer to a gap she saw clearly: survivors who had been cured of Hodgkin lymphoma decades earlier were often left without guidance on the late effects of the treatments that saved their lives. Under her leadership, Hodgkin’s International grew into a global network of more than 800 survivors, delivering monthly newsletters, webinars, and evidence-based resources on late effects, screening, and long-term risk. In 2024, she brought that vision to life in person, organizing the first Hodgkin’s International Conference in Boston, where more than 100 survivors, clinicians, and researchers gathered to share best practices and elevate survivor and caregiver voices.

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

Erin’s collaborations reached across Europe, North America, and Australia, connecting oncologists, survivorship researchers, and advocacy organizations including Blood Cancer United, the Lymphoma Research Foundation, the University of Cincinnati Cancer Center, and Duke Cancer Center for Onco-Primary Care. She was also a longtime partner of Cancer Nation’s Cancer Policy and Advocacy Training (CPAT) program, where her work helped bring the specialized needs of long-term survivors into policy and research conversations at the national level.

Erin died on February 24, 2026, from stomach cancer complicated by the long-term effects of the treatment she received as a child. She was 68. The community she built at Hodgkin’s International continues to carry her vision forward, connecting survivors and caregivers to the information, research, and quality care she spent her life fighting to make available to every long-term survivor. Read our memorial for Erin here.

Bradley J. Zebrack, PhD, MSW, MPH

Health Care Professional Award (Co-Presented by ASCO)

“Brad’s pioneering contributions to the field of AYA oncology and the psychosocial needs of this patient group represent a major innovation in the delivery of patient-centered care.”

— Patricia A. Ganz, MD, and Barbara Hoffman, JD,
Co-Founders, National Coalition for Cancer Survivorship

Bradley J. Zebrack, PhD, MSW, MPH, is a nationally recognized researcher, educator, and oncology social worker who has spent more than 25 years advancing the field of cancer survivorship. His research has shaped how the field understands quality of life, health disparities, supportive care, and the distinct needs of adolescents and young adults with cancer. He is a professor at the University of Michigan School of Social Work and one of the founding figures of adolescent and young adult (AYA) psychosocial oncology as a field of research.

Brad’s connection to Cancer Nation runs deep. Diagnosed with Hodgkin lymphoma in 1985 at age 25, he turned to the newly-founded NCCS (now Cancer Nation) for support and gave back almost immediately. In 1988, he and his then-fiancée Joanne Kelleher rode bicycles 11,000 miles around the perimeter of the United States over the course of a year, meeting with survivors, oncologists, nurses, social workers, and hospital administrators to advocate for medical and psychosocial support for people during and after cancer treatment, a novel concept at the time.

From left to right: Brad Zebrack and Joann Kelleher talk with Dr. Richard Karl at Moffitt Cancer Center, Tampa Florida, 1988.

The campaign raised more than $10,000 for NCCS and carried its message to communities across the country in the pre-internet era. Brad went on to serve on the NCCS Board of Directors from 1993 to 1998 and consulted on NCCS’s 1996 report, Imperatives for Quality Cancer Care: Access, Advocacy, Action and Accountability.

Brad earned his PhD in social work from the University of Michigan in 1999. During a postdoctoral fellowship with Patricia Ganz at UCLA, he developed quality-of-life questionnaires designed specifically for long-term cancer survivors and, later, for young adult survivors, tools now used widely across the field.

He has authored more than 170 peer-reviewed publications and 31 book chapters, mentored roughly 50 trainees, and holds fellowships with the American Psychosocial Oncology Society, the Society for Social Work and Research, and the Association of Oncology Social Work. His recent honors include the Rogel Scholar in Cancer Health Impact award from the University of Michigan Rogel Cancer Center (2025 to 2028), the Ruth McCorkle Excellence in Research Mentorship Award (2022), and the Archie Bleyer AYA Trailblazer Award (2025).

Learn more about the Ellen L. Stovall Award »

The post Cancer Nation to Recognize Erin Cummings and Bradley J. Zebrack with 2026 Ellen L. Stovall Award appeared first on Cancer Nation (Formerly NCCS).

Cancer Nation worked with Edge Research to survey 306 primary care providers (PCPs) and 302 oncologists nationwide to find out what really happens once a cancer diagnosis moves from one clinician’s hands to many. The answer: care that is supposed to be team-based is still running on individual effort, and survivors are too often the ones stitching it all together.

In this web briefing, Cancer Nation CEO Shelley Fuld Nasso, and Pam Loeb and Mariel Molina of Edge Research, present the full findings and what they mean for policy, practice, and the 18 million+ people living with, through, and beyond cancer.

Topic areas we explored in this survey of clinicians include:

• Why 86% of PCPs and 82% of oncologists say team-based cancer care isn’t happening the way it should.
• The information and confidence gaps that leave PCPs least prepared for survivorship care.
• The 20-point gap between oncologists who say they provide Survivorship Care Plans and PCPs who say they receive them.
• Where clinicians want to see system-level change.
• How clinicians are using AI in cancer care.
• Data on clinical trial recommendations.

Watch the full briefing below or watch it on YouTube.

Briefing Topic Chapters

View the Survey Materials

Cancer Nation has made the full Survivorship Survey: Clinician Perspective presentation slide deck and executive summary available for download.

See the Survivorship Survey: Clinician Perspective Survey Materials.

See our previous survey reports here.

The Survivorship Survey: Clinician Perspective was sponsored by Pfizer and Healing Works Foundation.

About Cancer Nation
Cancer Nation (formerly the National Coalition for Cancer Survivorship) is the nation’s oldest survivor-led cancer advocacy organization advocating for quality cancer care for all people touched by cancer. Established in 1986 by 23 leaders with expertise in cancer research, community-based support programs, cancer information services and cancer advocacy, Cancer Nation represents the more than 18.1 million Americans with a history of cancer by:

• Working with legislators and policy makers to improve cancer patient and survivor quality of care and quality of life after diagnosis,
• Advocating for changes in how our nation researches, regulates, finances, and delivers quality cancer care
• Empowering cancer survivors through publications and programs which provide tools for self-advocacy, and
• Convening other cancer organizations to address nationwide public policy issues affecting cancer survivors.

The post Cancer Nation Releases Results from Survey of 600 Clinicians on Survivorship Care appeared first on Cancer Nation (Formerly NCCS).

Read the full comment letter below or download:
Cancer Nation Comment Letter to the CMS (PDF)

Read the Cancer Nation Comment Letter to the CMS

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The post Cancer Nation Urges Patient-Centered Reforms in 2027 Medicare Fee Schedule appeared first on Cancer Nation (Formerly NCCS).

Why Michael Milken

Milken’s connection to the cancer survivorship movement reaches back decades. He partnered early with the National Coalition for Cancer Survivorship, now Cancer Nation, to co-chair THE MARCH: Coming Together To Conquer Cancer in 1998, when hundreds of thousands of survivors, advocates, and policymakers filled the National Mall and other venues across the country to demand better care and the research to make it possible.

The March launched a successful effort that doubled the budget of the National Institutes of Health, elevated cancer as a national priority, and brought to the national stage a survivorship movement that is still going strong nearly three decades later.

Photos from THE MARCH on the National Mall, September 1998.

Milken did not stop there. Through the Milken Institute and the FasterCures initiative, he has spent decades tearing down the barriers between discovery and the survivors waiting on it. He founded the Prostate Cancer Foundation, now the world’s largest philanthropic source of prostate cancer research funding, and helped launch the Melanoma Research Alliance. He pushed for the 21st Century Cures Act until it became law. His 2023 book, Faster Cures: Accelerating the Future of Health, makes the case he has been making for 50 years: waiting is not a strategy.

Survivors know the cost of waiting better than anyone. Milken has spent a lifetime refusing to accept it.

What is the March Forward Award?

The March Forward Award recognizes individuals whose leadership, investment, or advocacy has fundamentally changed how our nation researches, treats, or cares for people with cancer. Its name comes straight out of our own history: the 1998 March on Washington, and a belief that has guided us for 40 years.

Progress in cancer care requires us to continue marching forward, demanding the federal investment in research and improvements in care delivery. This award honors the people who refuse to wait. They create the momentum, build the institutions, advance the ideas, and move the rest of us with them.

Forty years, one demand

Forty years ago, survivors and caregivers who refused to accept a health care system that treated them as an afterthought came together to form Cancer Nation. Today, our demand has not changed: quality cancer care for every person cancer touches.

Honoring Milken at our 40th Anniversary Gala closes a circle that opened on the National Mall in 1998. It also opens the next one. Whole-person cancer care, survivorship care plans, and real financial protections are still not standard. That is the work ahead, and this is the night we build the momentum to move it forward. Fittingly, we will gather at the Milken Center for Advancing the American Dream, blocks from the Capitol where survivors made their case 28 years ago.

The post Michael Milken to Receive Cancer Nation’s Inaugural March Forward Award appeared first on Cancer Nation (Formerly NCCS).

Joslyn is an oncology therapist at Inova Peterson Life With Cancer in Fairfax, Virginia, where she offers short-term therapy to people with cancer, their caregivers, and bereaved loved ones. She is also new to the Cancer Nation community, and this year she stood in front of a room at the Cancer Nation Summit taking time to talk about something the cancer world too often rushes past: grief.

Oncology Is Where Her Heart Is: A Path Into Cancer Care

When Joslyn started school for social work, she was certain of one thing; the last place she would ever work was health care. Then, in the spring of 2020, she took a class on illness and family caregiving, and it rearranged everything. She chose a field placement on an inpatient palliative care team at a Philadelphia hospital, not knowing she would walk through those doors that fall in the middle of a pandemic.

Watching medical social workers show up for patients and families every day was what settled it. She finished her MSW, started her career at a major Philadelphia cancer center, and never looked back.

The pull toward service runs in her family. Her grandmother was a teacher, guidance counselor, ombudsman, and psychotherapist. Her mother was a life coach. Joslyn comes from generations of women who spent their lives helping others, and she credits their kindness and commitment with setting her on the path to becoming a social worker and a therapist.

What Grief Looks Like in Cancer

At the Cancer Nation Summit, Joslyn returned to one idea again and again. There is no right or wrong way to grieve. Whatever your role in the cancer experience, she says, you are entitled to name, express, and share your grief.

She wants survivors and caregivers to understand that grief is not a phase to be completed and left behind. “Whether we welcome it or not, grief walks alongside us for the rest of our lives,” Joslyn says.

Grief may look and feel different as time passes, she says, but it stays with us even as our worlds change and grow around it. And everyone deserves to honor it in the way that is truest to them, whether in public or in private, in quiet rituals or shared traditions, through words, art, song, or connection with nature.

Whole Person Cancer Care, From Diagnosis Forward

Joslyn’s clinical interests read like a map of the places cancer care too often goes quiet: palliative care, grief, adolescents and young adults, and fertility preservation. As a young adult cancer survivor, she advocates for a community that is navigating cancer alongside school, careers, romantic relationships, and family planning, and she believes each of these areas needs to be discussed more candidly. She is also a firm believer that palliative care can, and should, begin at diagnosis, with early conversations about values, quality of life, and how to manage pain and treatment side effects.

She has also seen what stands in the way. In oncology clinics, Joslyn spent much of her time helping survivors navigate finances, insurance, transportation, and a scarcity of resources. Sometimes the emotional work had to wait while she focused on keeping a patient’s lights on or figuring out their next meal. And when she succeeded, when she secured a ride to chemotherapy or a grant to help cover rent, the relief itself created room for the feelings to surface. Joslyn’s experiences show us how emotional care and material stability are not separate needs. They hold each other up.

Joslyn wants the system to close the distance between disciplines. From working in clinics, she has watched how differently a hard conversation can go when social workers and doctors prepare together and walk into the room with a shared understanding of a survivor’s emotional needs. More collaborative, interdisciplinary training between oncologists and mental health providers, she says, would change what care feels like for the people receiving it.

You Do Not Have to Do This Alone

Much of Joslyn’s work comes down to a single, quiet correction. She often hears damaging narratives about the need to be “strong” in the face of cancer. When she meets that pressure in the therapy room, she helps survivors examine what strength actually means, who defines it, and who those expectations really serve. Often, just asking the question is enough to open a door. You do not have to be strong. You can say no. You can name a need, and that is neither weakness nor a burden.

Her message to survivors and caregivers, especially those newly diagnosed or newly grieving, holds two truths at once. You do not have to endure this alone, and you deserve to be embraced and protected. Finding support that works for you, whether therapy, a support group, an online community, advocacy work, or some combination, can make the experience even the tiniest bit more bearable.

Joslyn is already looking forward to Hill Day next year, when she plans to speak with elected officials about expanding cancer survivorship care at the state and federal levels. Her message to policymakers is direct. Think about the people you love most. If your spouse, your parent, your child, or your childhood friend were diagnosed with cancer, you would want them to have every resource and investment in their long-term health that they deserve. If the answer is yes, she says, then supporting survivorship care should be a no-brainer.

Want to turn your experience into action, the way Joslyn has?

Learn more about Cancer Nation Advocates and join for free. »
Check out how Cancer Nation Ambassadors are improving survivorship care in their communities »

Frequently Asked Questions

What is Whole Person Cancer Care?
Whole Person Cancer Care means treating the entire person affected by cancer, not only the disease. It includes mental and emotional health, financial stability, practical needs like transportation, and support for caregivers, all alongside medical treatment. As Joslyn Trovati’s work shows, a survivor who cannot pay rent or reach a chemotherapy appointment cannot fully focus on healing. Cancer Nation advocates for a system that treats these needs as connected, from diagnosis onward.

How do cancer survivors and caregivers cope with grief?
There is no single right way to grieve. Grief in the context of cancer can show up at any stage, for survivors and caregivers alike, and it often stays with people long after treatment ends. Joslyn Trovati encourages survivors and caregivers to name and honor their grief in whatever way feels true to them, whether through therapy, ritual, art, connection with others, or time in nature, and to know that they are entitled to that grief no matter their role in the cancer experience.

When should palliative care start?
Palliative care can and should begin at diagnosis, not only at the end of life. Early palliative care focuses on a person’s values, quality of life, and the management of pain and treatment side effects. Beginning these conversations early, Trovati says, helps survivors make care decisions that reflect what matters most to them.

How can cancer survivors and caregivers get involved in advocacy?
Survivors and caregivers can turn their lived experience into policy change through Cancer Nation Advocates, Cancer Nation’s advocacy training program. Advocates learn to speak with elected officials, share their stories, and push for expanded survivorship care at the state and federal levels. Joslyn plans to join Hill Day next year to advocate for exactly that. Learn more at canceradvocacy.org.

What mental health support is available for people with cancer?
Many cancer centers offer behavioral health services, including short-term therapy, support groups, and counseling for survivors, caregivers, and bereaved loved ones. Some programs, like the one where Joslyn Trovati works, provide these services at no cost. Cancer Nation advocates for mental health support to be integrated into cancer care as a standard part of Whole Person Cancer Care, not an afterthought.

The post There Is No Right or Wrong Way to Grieve: Joslyn Trovati on Grief, Survivorship, and Whole Person Cancer Care appeared first on Cancer Nation (Formerly NCCS).

The American Cancer Society Cancer Action Network (ACS CAN) led the brief on behalf of key national public health groups in support of physicians in the American Academy of Pediatrics v. Kennedy lawsuit. This case is pending at the U.S. Court of Appeals for the First Circuit and challenges changes to the membership of the Advisory Committee on Immunization Practices (ACIP) arguing that vaccine recommendations made by that body subsequently lack clear scientific basis and negatively impact disease prevention and survivorship.

The organizations that joined the brief are dedicated to supporting patients and their families across the United States and collectively represent millions of individuals who suffer from various conditions that rely on vaccines for protection, treatment and/or prevention. Individuals who are immunocompromised and especially vulnerable to infectious and vaccine-preventable diseases rely heavily on broad community vaccination to safely participate in daily life activities such as attending school, working outside the home and seeking medical care.

Below are excerpts from the amicus brief highlighting the groups’ concerns and urging the court to side with the plaintiffs:

“Vaccinations play a critical role in promoting public health, preventing serious illnesses and protecting millions of people with serious conditions that compromise their immune systems or otherwise put them at heightened risk for severe illness from vaccine-preventable diseases. Amici have strong and continuing interests in protecting access to and development of vaccines that are proven to be safe and effective, and therefore profound interest in maintaining the institutional integrity of the Advisory Committee on Immunization Practices (ACIP) and ensuring that its membership complies with applicable legal standards.”

“Given the implications of ACIP decisions for public health, it is critical that its recommendations be evidence-based, grounded in the latest science and informed by the professional expertise and experience of its members. ACIP’s governing statutes, regulations and charter require as much. The recent termination and replacement of ACIP’s membership, and ACIP’s subsequent changes to its vaccine recommendations, represent a radical departure from those requirements and risk reducing access to and undermining confidence in vaccines. The public health consequences of these actions are grave. People with cancer and other life-altering conditions face heightened risks as community protection erodes and access to promising vaccine treatments is delayed.”

“ACIP’s changes to vaccine recommendations have a sweeping impact on American public health generally and on the health of patients with cancer and other chronic conditions in particular. Any changes must therefore be well-considered, evidence-based and made by qualified experts in the field. The Department of Health and Human Services cannot ignore the ACIP membership criteria established by statute, regulation and the ACIP charter.”

The following organizations have signed onto the brief and are represented by ANDERSON & KREIGER LLP in the filing:

Read the full amicus brief below or download:
ACIP Amicus Brief (PDF)

Read the ACIP Amicus Brief

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We urged OMB to preserve transparent, evidence-based grantmaking that protects scientific integrity, supports continued innovation in cancer research, and ensures patients and cancer survivors benefit from the discoveries that improve care and quality of life.

Read the full comment letters below or download them:
Cancer Nation Letter to OMB (PDF)
Cancer Leadership Council Letter to OMB (PDF)

Read Our Letter to OMB

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Read The Cancer Leadership Council Letter to OMB

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The post Cancer Nation Responds to OMB Proposed Rule On Medical Research appeared first on Cancer Nation (Formerly NCCS).

The Cancer Nation Leadership Academy equips Ambassadors with the skills, knowledge, and community to lead change. Each Cancer Nation Ambassador develops and leads a project that addresses real gaps in cancer care — from clinical settings to community spaces — helping ensure more people living with, through, and beyond cancer receive the care they deserve. Their work demonstrates what’s possible when people with lived experience step forward to lead change.

“Survivorship starts in the community, and every community’s needs look different. Cancer Nation Ambassadors know their communities best, so they’re the ones who identify those gaps and step up to close them. Their projects range from wellness to sexual health, supporting caregivers, and reaching underserved communities, and every one of them moves us closer to whole person cancer care.” said Cancer Nation CEO Shelley Fuld Nasso.

“The Cancer Nation Leadership Academy brings together a diverse group of advocates and survivorship professionals to learn from each other and drive survivorship projects across the nation,” said Veronika Panagiotou, PhD, Cancer Nation Director of Advocacy and Programs. “Every ambassador brings passion and determination to their work for the cancer community. These are the leaders who will transform cancer care.”

# # #

Grant funding for the 2026 Cancer Nation Leadership Academy program provided by Genmab.

The post Meet the 2026 Cancer Nation Leadership Academy Ambassadors appeared first on Cancer Nation (Formerly NCCS).

His parents, who immigrated to the United States from India, became his full-time navigators, dropping almost everything to manage his care, track his treatment, and make the decisions a three-year-old could not. When the standard protocol failed, they sought second opinions and found Memorial Sloan Kettering, where Eshan joined an immunotherapy trial that saved his life.

The cost of getting there was not only medical. Eshan describes the central challenge of his survivorship as access; to information, to guidance, and to his parents’ ability to navigate and advocate for him and his care. The trial worked, but reaching it took a level of persistence, resourcefulness, and second-opinion-seeking that not every family is positioned to manage.

The Turning Point

Eshan was drawn to advocacy when he watched other survivors who had walked similar paths use their voices to make a difference. That recognition, that one person’s story could move something larger, reframed what his own experience could become.

He channels that advocacy through entrepreneurship. As a Cancer Nation Advocate and Ambassador (formerly an Elevating Survivorship ambassador, now part of the Cancer Nation Leadership Academy), he connected to a community of people working toward the same goal from different angles. His own angle is the private market, and it took shape as Arul Health, the company he is building to solve the navigation and access problems he lived through.

The Advocacy Work

Eshan recently graduated from Harvard and is building Arul Health, his Boston-based health care startup, around the problem that defined his survivorship: care navigation. Patients with complex diagnoses can spend months simply finding the right care, working through insurance, specialist waitlists, and trial eligibility, often alone and often at the hardest moments of their lives.

Eshan’s view is clear: navigation needs to change. It should be simpler to manage care, and it should function as what he calls “a perfect symphony of health care and social care,” rather than a maze each family has to solve from scratch.

When it comes to beginning advocacy work, Eshan knows there is no single correct way to carry a cancer diagnosis, and that figuring out where it fits is something everyone does differently. As he puts it, “Your story is flexible. It can represent as much or as little of your life as you choose.”

Why It Matters

Eshan points to gaps in navigation as a critical juncture that decides outcomes, and it is exactly where Cancer Nation’s call for Whole Person Cancer Care lives. Survivorship Care Plans, coordinated navigation, and the connection between health care and social care are not administrative details. For a family staring down a failing protocol, they are the difference between finding the next option and never knowing it existed.

Eshan’s message to the cancer care system is just as clear. The work his parents did, becoming full-time navigators overnight, should not depend on luck or resources. Better navigation is not a convenience. It is critical access, and access shapes who survives.

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The post Saved by a Trial, Building the Fix: Eshan Vishwakarma’s Path from Patient to Founder appeared first on Cancer Nation (Formerly NCCS).