Kara Kenan: Helping Others is the Greatest Reward of Advocacy
“Nobody wins afraid of losing” rings true for Kara Kenan, a breast cancer survivor. It’s her favorite line from Chris Stapleton’s song, “Starting Over,” which, for her, is symbolic of overcoming the fear of a cancer diagnosis and coming out on the other side. Kara recognizes that winning looks different for every survivor. While it […]
Webinar – Care and Career Support: From Health Systems to Employers
NCCS hosted a webinar about the unique demands of caregiving in cancer and strategies that employers and health systems might engage to support caregivers. Webinar Speakers Margaret L. Longacre, PhD, Associate Professor and Chair of Public Health, Arcadia University Michele Cygan, Director of Compensation and Benefits, Arcadia University Christina Sisti, DPS, MPH, MS, NCCS CPAT […]
Bethany Ross: Advocating for Quality Cancer Care Through Storytelling
Advocate Spotlight July 2022 – Bethany Ross Bethany Ross is a four-year neuroendocrine cancer survivor, or “cancer badass,” as she prefers to be called. She attended NCCS’s in-person Cancer Policy and Advocacy Team (CPAT) Symposium for the first time in June as a CPAT steering committee member. “It was amazing. I’ve been talking to these […]
NCCS Reacts to Dobbs v. Jackson Women’s Health Organization Decision and Potential Impact on Access to Quality Cancer Care
Last week, the US Supreme Court issued a ruling that overturned Roe v. Wade, thus eliminating the constitutional right to abortion. In response to the Dobbs v. Jackson Women’s Health Organization decision, various patient advocacy organizations, cancer centers, and professional societies issued statements expressing concerns for the future of cancer care. Read NCCS’s statement below. […]
Wenora Johnson: The Art of Caregiving: Connection and Kindness
Advocate Spotlight June 2022 – Wenora Johnson “One of the most important lessons I’ve learned as a caregiver is that the smallest act of kindness means so much to a person who’s not able to do for themselves,” says Wenora Johnson, who has cared for her brother throughout his diagnosis and treatment for stage 4 […]
Webinar – Beyond the Checkbox: Delivering Meaningful Cancer Survivorship Care in a Community Setting
Dr. Crystal Labbato joined NCCS to deliver a presentation about providing an effective model of cancer survivorship care in a community setting. Dr. Labbato is the Survivorship Program Coordinator for Baptist Health Louisville and LaGrange hospitals in Kentucky. Nearly 17 years since the Institute of Medicine released their landmark report, “From Cancer Patient to Cancer […]
Webinar: Survivorship Needs for People Living with Advanced and Metastatic Cancers
Dr. Michelle Mollica, Senior Advisor at the National Cancer Institute’s (NCI) Office of Cancer Survivorship, joined NCCS to discuss NCI’s recent efforts focused on understanding and addressing the survivorship needs for the growing population of survivors who are living with advanced and metastatic cancers. Bethany Ross, CPAT Steering Committee Member and Advocate, also participated in […]
Erin McGee Ferrell: The Art of Cancer Advocacy
Advocate Spotlight May 2022 – Erin McGee Ferrell Erin McGee Ferrell’s cancer was discovered during a traditional ceremony in a small Ecuadorian town along the Amazon River. She’d been traveling as an independent artist for five weeks, researching natural paints and pigments from Amazonian plants and minerals. Although she felt fine throughout her travels, a […]
NCCS Announces New Elevate Ambassadors Selected to Improve Local Survivorship Care
The National Coalition for Cancer Survivorship (NCCS) is proud to announce the participants of the 2022 – 2023 Elevating Survivorship program. After a competitive application process, NCCS selected 11 individuals from across the United States to serve as Elevate Ambassadors. The Elevate Ambassadors will receive support, mentorship, networking opportunities, and training from NCCS to help them […]
Brad Power: The Power of Innovation in Cancer Advocacy
Advocate Spotlight April 2022 – Brad Power Brad Power was a process innovation researcher and consultant with more than 35 years of experience, as well as an author of more than 75 articles for the Harvard Business Review, when he was diagnosed with lymphoma in 2018. After successfully completing a standard course of chemotherapy, he has […]
Webinar: A Nurse-Led Care Model to Improve Access to Rural Cancer Survivorship Care
Pam DeGuzman, PhD, RN, joined NCCS to discuss the development and evaluation of Comprehensive Assistance: Rural Interventions, Nursing and Guidance (CARING), a nurse-led intervention aimed at reducing disparities in quality of life for rural cancer survivors. During active treatment, rural survivors may forgo supportive care interventions to prioritize and consolidate medical visits into one day, […]
COVID-19 and Cancer: Otis Brawley, MD on the Future of the Pandemic
Last week, NCCS hosted a conversation with cancer control expert and epidemiologist Otis Brawley, MD. NCCS CEO Shelley Fuld Nasso moderated the discussion. “We knew exactly who we wanted to be our first guest speaker in this series. Dr. Otis Brawley is a Bloomberg Distinguished Professor at Johns Hopkins University, an oncologist and an epidemiologist. […]
Jean Di Carlo-Wagner: Don’t be Embarrassed to Death
In March of 2003, Jean Di Carlo-Wagner listened to a public service announcement by Katie Couric, in which she discussed the symptoms of colon cancer. It was then that Jean knew she had cancer. After two years of bowel changes, fatigue, reflux, pain in her gut, weight changes, night sweats, and bloating, Jean’s doctor ordered […]
NCCS Joins Groups in Urging Reinstatement of Emergency Paid Sick and Family Leave in Supplemental COVID-19 Relief Package
NCCS has advocated for the inclusion of paid family and medical leave in the Build Back Better Act and will continue to elevate this policy as a priority for cancer survivors and their families. Recently, NCCS joined with other patient and caregiver organizations to send a letter urging the Biden Administration to reinstate emergency paid […]
NCCS Applauds Biden Administration’s Renewed Cancer Moonshot Initiative
The Biden-Harris Administration announced they are relaunching the Cancer Moonshot initiative. As Vice President, Biden launched Cancer Moonshot in 2016 with the goal of advancing progress against cancer. As announced yesterday, the revived initiative builds upon previous commitments and adds the new goals of reducing cancer deaths by 50% over 25 years and improving the […]
Roberta Albany: On a Mission to Educate the Black and Brown Cancer Communities
“I’m beautiful. I’m blessed, I’m loved, and I’m strong. I’m grateful. I’m victorious. I am a warrior. I am a survivor – but, more importantly, I am enough in Jesus’ name. Amen,” Roberta Albany says when she’s feeling down, depressed, or not like her confident self before her breast cancer diagnosis. Roberta describes the nine […]
NCCS Joins Coalition in Challenging ‘Junk’ Insurance Plans
NCCS joined with other members of the Partnership to Protect Coverage coalition in sending a letter to the Departments of Health and Human Services, Treasury, and Labor urging them to issue new regulations limiting the sale and availability of short-term, limited-duration (STLD) health insurance. Unlike traditional health insurance, STLD insurance plans, often referred to as […]
NCCS Announces New Appointment of Four Board Members
Silver Spring, MD – The National Coalition for Cancer Survivorship (NCCS) is pleased to announce four new officers of its Board of Directors. Laurie Isenberg is the new Board Chair, and Lisa D. T. Rice is the Vice Chair. Dr. Julia Rowland is the Secretary, and Taylor Ferrell will serve on the Finance Committee, along […]
NCCS Advocate Spotlight: Rebecca Esparza
Advocate Spotlight January 2022 | Rebecca Esparza In August of 2001, 30-year-old Rebecca Esparza noticed her clothes weren’t fitting the way they should. Although she was an avid fan of step aerobics and running, her stomach seemed to be consistently bloated. By September, Rebecca felt the need to make an appointment with her gynecologist, even […]
NCCS Advocate Spotlight: Liza Fues
Advocate Spotlight December 2021 | Liza Fues Liza Fues was 25 years old and a new resident of Dallas, TX, when she discovered a lump in her breast in 1985. Her gynecologist immediately referred her to a breast surgeon, who proceeded with a biopsy. Because Liza was young with no family history of cancer, everyone […]
NCCS Presents 6th Annual Ellen L. Stovall Award to Deborah K. Mayer, PhD, RN, and Kimberly D. Richardson for Their Innovation and Dedication to Cancer Survivors
(Silver Spring, MD) – The National Coalition for Cancer Survivorship (NCCS) presented the 6th annual Ellen L. Stovall Awards for Innovation in Patient-Centered Cancer Care on Wednesday, November 17, to Deborah K. Mayer, PhD, RN, and Kimberly D. Richardson. “Each year, we honor Ellen’s legacy of pioneering innovative, patient-centered cancer care at the Stovall Awards […]
NCCS Advocate Spotlight: Stef Gayhart
Advocate Spotlight November 2021 | Stef Gayhart Stef Gayhart was building a life for herself and her son, when she was blindsided in August 2019 by a rare disease diagnosis: Stage 3 tongue cancer. At the time, Stef was a healthy 37-year-old working as a critical care nurse. She fought for her independence, and then […]
Why Cancer Patients and Caregivers Need Paid Leave
It is critical that cancer patients and their caregivers have access to paid time away from work when receiving treatment or caring for their loved one. Patients with serious health care needs and their caregivers suffer in multiple ways from a lack of paid leave. Patients’ treatment may suffer, and they may suffer economically. The […]
NCCS Pushes for Inclusion of Critical Health Care Provisions in Reconciliation Package
NCCS joined with other advocacy groups in sending letters to congressional leadership supporting the inclusion of several critical provisions in the reconciliation bill that Congress is currently negotiating. Specifically, NCCS expressed support for provisions that would permanently close the Medicaid coverage gap, make the enhanced advance premium tax credits (APTCs) included in the American Rescue […]
NCCS Welcomes New Team Members
NCCS is pleased to announce four new staff members who recently have joined our organization. They bring essential skills and experiences in public policy, fundraising, advocacy, and communications. Each has a deep personal connection to NCCS’ mission. They join the dedicated NCCS team in support of our critically important work. Please read about our new […]
NCCS Advocate Spotlight: Allison Rosen
Advocate Spotlight October 2021 | Allison Rosen After years of struggling with Crohn’s disease, Allison Rosen’s life was totally disrupted at the age of 32, when a colonoscopy revealed Stage 2C colorectal cancer in June 2012. Allison, now cancer free for the past nine years, transformed herself into an ardent patient, research, and policy advocate. […]
NCCS Advocate Spotlight: Cora Fahy
Advocate Spotlight September 2021 | Cora Fahy As a physical therapist assistant specializing in lymphedema and breast cancer rehabilitation, Cora Fahy’s diagnosis of Stage 2A ER/PR+ Her2- IDC Multifocal Multicentric breast cancer in 2015 was something she could handle. She understood the pathology, the treatment, and the prognosis from working with other women going through […]
NCCS to Recognize Deborah K. Mayer, PhD, RN and Kimberly D. Richardson with 2021 Ellen L. Stovall Award
NCCS is pleased to announce the 2021 winners of the Ellen L. Stovall Award for Innovation in Patient-Centered Cancer Care are Deborah K. Mayer, PhD, RN, and Kimberly D. Richardson. They will be recognized at the 2021 Ellen L. Stovall Award Reception on Wednesday, November 17. The Stovall Award is given annually to two recipients […]
NCCS Joins Statement of Support for COVID-19 Vaccination of All Health Care Workers
NCCS joined other patient, professional, and research organizations of the Cancer Leadership Council (CLC) in issuing a statement in support of COVID-19 vaccination of all health care workers. The emergence of the highly contagious Delta variant, which is now sweeping through unvaccinated Americans across the country, creates serious problems for cancer patients. “Cancer care professionals […]
NCCS Advocate Spotlight: Dr. Crystal A. Champion
Advocate Spotlight August 2021 | Dr. Crystal Champion As a physical therapist, certified lymphedema therapist, principal of her own oncology rehabilitation practice – Eminence Physical Therapy, founder of the non-profit Champions Can! Foundation for Cancer Wellness Inc, and author of the book The Elements of Cancer Survivorship: A Guide to Navigating the Journey, it is […]
NCCS Comments on CMS-Proposed Benefit and Payment Parameters for 2022
NCCS submitted comments to the Departments of the Treasury and Health and Human Services and the Centers for Medicare and Medicaid Services (CMS) on the proposed Notice of Benefit and Payment Parameters (NBPP) for 2022, the annual rule governing core provisions of the Affordable Care Act (ACA), including the operation of the marketplaces, standards for […]
U.S. House Reps. DeSaulnier and Carter Introduce Bipartisan Cancer Care Planning and Communications Act (CCPCA)
Today, Representatives Mark DeSaulnier (D-CA) and Earl L. “Buddy” Carter (R-GA), co-chairs of the Congressional Cancer Survivors Caucus, introduced the Cancer Care Planning and Communications Act (H.R. 4414), which would create a Medicare service for cancer care planning, a key priority of the National Coalition for Cancer Survivorship. The legislation would improve doctor-patient communication by […]
NCCS CEO Shelley Fuld Nasso Discusses Cancer Survivorship Issues On “Great.com Talks With…” Podcast
NCCS CEO Shelley Fuld Nasso recently discussed how we can improve cancer survivors’ lives with Emil Ekvardt, founder of Great.com, on an episode of their “Great.com Talks With…” podcast. Cancer survivors often face long term debilitating effects from cancer treatment such as: fatigue, cognitive issues, depression, and anxiety. Patients need as much help and support […]
NCCS Advocate Spotlight: Rachel Ferraris
Advocate Spotlight July 2021 | Rachel Ferraris Nearly all cancer survivors can reflect on their cancer journey and recall one specific moment – the low point. To be able to reflect on that moment is, of course, the real gift. It means you are a survivor. Reaching the light of survivorship though is only done […]
NCCS Applauds the Supreme Court Decision Dismissing the Challenge to the ACA
June 17, 2021. – The National Coalition for Cancer Survivorship (NCCS) applauds the decision of the Supreme Court to dismiss the challenge to the Affordable Care Act. NCCS CEO Shelley Fuld Nasso issued the following statement. “The National Coalition for Cancer Survivorship is pleased that the Supreme Court has dismissed the challenge to the Affordable […]
NCCS Elevate Ambassador Kimberly Richardson Drives Award-Winning SASEP Initiative
As lifelong Chicagoan Kimberly Richardson trained for the 2013 Chicago Marathon, the unusual lethargy she felt drove her into her doctor’s office. Diagnosed with an ovarian cyst she was scheduled for a routine surgery to remove it. She woke from the surgery to a tap on her shoulder, “Kim, it’s cancer. We’ll talk through it […]
Nancy Howe’s Cancerversary Keeps Her Moving
My #cancerversary®, October 16, 1997, was the day I reaffirmed how important it is to listen to my body – it was also the day I finished cancer treatment. My cancer care team told me that while my prognosis wasn’t great, I was in better shape than they expected. I was diagnosed with an aggressive […]
Statement From NCCS CEO Shelley Fuld Nasso Regarding President Biden’s Statement on National Cancer Research Month
President Biden wrote a letter to the American Association for Cancer Research (AACR) recognizing May as National Cancer Research Month. National Coalition for Cancer Survivorship (NCCS) CEO Shelley Fuld Nasso made the following statement: “I am pleased that President Joe Biden and First Lady Jill Biden have sent their best wishes regarding National Cancer Research […]
NCCS Joins Coalition Urging Congress to Improve Health Care Coverage Affordability and Access
NCCS joined the Partnership to Protect Coverage coalition in a letter urging Congress to pass legislation to address affordable health insurance premiums, out-of-pocket costs, expand Medicaid, and limit junk insurance plans. The letter was sent to Congressional leaders in both the House and Senate, and the White House and concludes by stating that the coalition […]
Survivorship Champions: A New NCCS Initiative for Clinicians and Researchers
How one survivor’s journey led to her realization of what survivorship care is lacking and the importance of advocating for yourself during survivorship. Note: This post originally appeared in the Spring 2021 issue of HEAL, a survivorship magazine from CURE Today. Shelley Fuld Nasso, MPP By NCCS CEO Shelley Fuld Nasso, MPP Sarah Cohn knows […]
The Birth of the Cancer Survivorship Movement and How It Transformed Cancer Care for Millions
Guest Post by Judith L. Pearson Best-Selling Author of From Shadows to Life: A Biography of the Cancer Survivorship Movement “Survivorship has been my passion for three decades, so I might talk your ear off!” When Susie Leigh sent those words in an email to me in the summer of 2017, I had no idea […]
Biden Rescinds Trump Admin Proposal to Limit Medicare Part D Coverage of Drugs in “Six Protected Classes”
This week, the Biden administration rescinded a Trump administration-proposed plan that would have allowed Medicare Part D plans to limit coverage of some drugs in each of the “six protected classes.” The Trump policy sought to remove the protected classes and allow coverage of only one drug per class, including certain cancer treatments. NCCS has […]
NCCS Recommends That States Allocate COVID-19 Vaccines to Cancer Care Providers
The National Coalition for Cancer Survivorship (NCCS) and the Cancer Leadership Council (CLC) sent a letter to the CDC’s Advisory Committee on Immunization Practices (ACIP) to recommend actions to accelerate the vaccination of cancer survivors, who are at risk of poor outcomes from COVID-19. Cancer patients have been confronted by confusing allocation rules and hard-to-navigate […]
COVID-19 Vaccines and Cancer: A Conversation with Cancer Expert Otis Brawley, MD
The National Coalition for Cancer Survivorship (NCCS) hosted a conversation on February 23 about COVID-19 vaccines with cancer control expert and Bloomberg Distinguished Professor at Johns Hopkins University, Otis Brawley, MD. Two COVID-19 vaccines have been approved, with more vaccine candidates on the horizon. What do the vaccines mean for people with a history of […]
NCCS Joins Patient, Disability, and Health Care Organizations to Urge U.S. Supreme Court to Protect Medicaid and Rule Against Work Requirements
Loss of Patient Protections Would Raise Barriers to Health Insurance — Seventeen patient groups representing millions of Americans with pre-existing conditions filed an amicus curiae (“friend-of-the-court”) brief today in the U.S. Court of Appeals for the Fifth Circuit in the case Texas v. United States, citing the devastating impact patients would face should the court uphold the District Court ruling to invalidate the Affordable Care Act (ACA). […]
National Quality Forum Names NCCS CEO Shelley Fuld Nasso to 2021 Leadership Consortium Roster
NOTE: This press release was originally published on the National Quality Forum (NQF) website » FOR IMMEDIATE RELEASE FEB 24, 2021 CONTACT: Proof Strategies 202-478-9326, press@qualityforum.org Washington, DC – Today, NQF announced its 2021 Leadership Consortium roster, welcoming leading healthcare experts from 31 diverse Member organizations to shape 2022 priorities for the quality ecosystem. The […]
NCCS and Other Cancer Groups Urge HHS to Keep Six Protected Classes in Medicare Part D Drug Plans
The National Coalition for Cancer Survivorship (NCCS) joined with the Cancer Leadership Council (CLC) in urging Health and Human Services Secretary-Designate Xavier Becerra to protect Medicare beneficiaries’ access to Part D drugs in six protected classes, which include certain cancer treatments. In January, the Centers for Medicare and Medicaid Services (CMS) issued a request for […]
NCCS Urges CDC Committee to Include Cancer Survivors in High-Risk Category for COVID-19 Vaccine Distribution
In a letter to the CDC’s Advisory Committee on Immunization Practices (ACIP), NCCS urged the committee to review the data related to the risks that COVID-19 poses to cancer survivors as they monitor and update the immunization schedule and evaluate states’ flexible use of the schedule. There are serious risks to cancer survivors from infection […]
NCCS, Cancer Groups Urge CMS to Withdraw Most Favored Nation (MFN) Medicare Part B Rule That Will Harm Patients and Reduce Access to Care
The National Coalition for Cancer Survivorship (NCCS) joined other member organizations of the Cancer Leadership Council (CLC) in a letter to Centers for Medicare & Medicaid Services (CMS) Administrator Seema Verma, urging “immediate action” by CMS to withdraw an interim final rule that implements a most favored nation (MFN) model in Medicare Part B drug […]
NCCS Letter to HHS: Proposed Regulatory Review Rule Would Create Unnecessary Uncertainty for Patients
The National Coalition for Cancer Survivorship (NCCS) recently submitted comments urging the Department of Health and Human Services (HHS) to withdraw a recent proposed rule that would require the review of HHS rules that are more than 10 years old. If implemented, this proposed rule would automatically eliminate regulations that are 10 years old or […]
NCCS Opposes Most Favored Nation (MFN) Rule: New Medicare Part B Drug Payment Model Will Harm Patients
The National Coalition for Cancer Survivorship (NCCS) opposes the Most Favored Nation (MFN) Model for reimbursing Medicare Part B drugs. The MFN Model was released by the Trump administration last week as an Interim Final Rule. This model would drastically change the way Medicare pays for certain drugs, including many oncology drugs, and could limit […]
NCCS Presents 5th Annual Ellen L. Stovall Award to Julia H. Rowland, PhD and Thomas J. Smith, MD for Their Innovation and Dedication to Cancer Survivors
(Silver Spring, MD) – The National Coalition for Cancer Survivorship (NCCS) presented the 5th annual Ellen L. Stovall Award for Innovation in Patient-Centered Cancer Care on November 18 to the 2020 winners: Julia H. Rowland, PhD and Thomas J. Smith, MD. Named for former NCCS CEO Ellen Stovall, who died in 2016 due to long-term […]
NCCS Recommends Making COVID-19 Medicare Telehealth Coverage Expansion Permanent
NCCS recently submitted a comment letter to the Centers for Medicare and Medicaid (CMS) regarding the Medicare physician fee schedule for calendar year 2021. The comment letter focuses on telehealth-related provisions of the proposed rule, as we are learning from our findings from our Telehealth Project that both patients and providers need more tools and […]
NCCS and Cancer Groups Make Recommendations to CMS Regarding Proposed 2021 Hospital Outpatient Prospective Payment System (OPPS)
NCCS joined with other cancer patient and provider groups in a comment letter to the Centers for Medicare and Medicaid Services (CMS) regarding the proposed rule related to the hospital outpatient prospective payment system. Among the issues outlined in the letter is a concern about an additional reduction in payment for drugs in the 340B […]
NCCS and Cancer Groups Urge National Academy of Medicine to Include Cancer Patients in Phase IB COVID-19 Vaccine Allocation
NCCS joined with a group of patient and provider advocacy groups in a letter to the National Academy of Medicine (NAM) on vaccine allocation. In the letter, the groups articulate the substantial risk that cancer patients face during the pandemic and shared data on the negative outcomes of patients with cancer and concurrent COVID-19. The […]
NCCS to Recognize Julia H. Rowland, PhD and Tom Smith, MD with 2020 Ellen L. Stovall Award
NCCS is pleased to announce the 2020 winners of the Ellen L. Stovall Award for Innovation in Patient-Centered Cancer Care are Julia H. Rowland, PhD and Thomas J. Smith, MD. They will be recognized at the 2020 Virtual Stovall Award Reception on Wednesday, November 18 at 7:00 p.m. ET. The esteemed selection committee chose from […]
Advocating for Women Who Choose to Go Flat After Mastectomy
By Kim Bowles Founder Not Putting On a Shirt When I woke up from surgery and realized my surgeon had overridden my wishes, I was angry. I thought that because I had been clear with him, that I was safe. But as I began speaking with other women, I discovered that I was not alone […]
Advocacy Alert: Tell Congress to Expand Paid Leave Eligibility to Cancer Survivors
Expand Eligibility for Paid Leave to Include Cancer Survivors: We urge Congress to expand eligibility for the paid family and medical leave to include people with chronic conditions, like cancer, and working members of their households. Because of their history of cancer and cancer treatment, cancer patients are especially vulnerable to COVID-19. Cancer survivors may […]
NCCS Mourns Former Board Member Kathy LaTour
Kathy LaTour, breast cancer survivor, author of The Breast Cancer Companion, and co-founder of CURE Magazine, died on June 19. Kathy served as an NCCS board member from 1992 to 1996. After her cancer diagnosis in 1986, she turned her formidable writing talents to informing and supporting cancer patients and survivors. When Diane Balma was […]
Black Lives Matter
Black Lives Matter We see you. We hear you. We stand with you. The National Coalition for Cancer Survivorship (NCCS) is saddened and dismayed by the murder of George Floyd and many others who have suffered as a result of racial injustice. We condemn racial injustice and support our Black colleagues — survivors, advocates, caregivers, […]
