NCCS Urges CMS to Preserve Access to DIEP Flap Breast Reconstruction
Today, the Centers for Medicare and Medicaid Services (CMS) hosted a public meeting, in which they sought input on its decision to sunset the S code for deep inferior epigastric perforator (DIEP) flap reconstruction. NCCS has engaged in advocacy, along with other patient advocacy organizations and health care providers, to encourage CMS to reinstate the codes. The decision to end […]
Webinar – Survivorship at Atrium Health Wake Forest Baptist Comprehensive Cancer Center: Creating a Practical Workflow
The National Coalition for Cancer Survivorship (NCCS) hosted a Survivorship Champions webinar about survivorship care implementation, “Survivorship at Atrium Health Wake Forest Baptist Comprehensive Cancer Center: Creating a Practical Workflow.” In this webinar, Dr. Stacy Wentworth and Jill Hyson, MSN, NP-C discuss survivorship care as a critical component of a patient’s cancer journey. The presenters […]
Sandra Finestone, PsyD: Be Bold and Don’t Hesitate – A 30-year Survivor’s Advice on Advocacy
Advocate Spotlight: Sandra Finestone, PsyD A cancer diagnosis can be overwhelming and life-changing, but for Sandra Finestone, it ignited a passion for advocacy that has lasted for more than 30 years. Sandra’s journey as a breast cancer survivor began in her late thirties when she discovered a lump in her breast during a routine check-up. […]
Accessing COVID-19 Resources After the Public Health Emergency Ends
The COVID-19 public health emergency (PHE), which has been in effect since early 2020, will end on May 11, 2023. The federal government may continue to distribute free COVID-19 tests from its supply of purchased COVID-19 treatments, tests, and vaccines through the United States Postal Service, states, and other community partners. While this supply remains, […]
NCCS Urges Insurance Companies to Preserve Access to DIEP Flap Breast Reconstruction
This week, NCCS joined other patient advocacy organizations and medical professional societies in submitting a letter to the CEOs of major insurance companies, expressing concerns with recent insurance coverage policy changes that have limited access to DIEP flap breast reconstruction surgery. Specifically, the letter asks these insurance companies to engage with individuals who have received […]
Webinar – Amplifying Your Message: Advocating Through Traditional Media Channels
NCCS hosted a CPAT webinar on leveraging traditional media for cancer advocacy with public relations and marketing expert Michael Holtz. While social media is an important tool for amplifying cancer advocacy messages, traditional media outlets like newspapers, television, and radio, and their digital counterparts, are still relevant and can help raise awareness and put pressure […]
NCCS and Cancer Leadership Council Issue Comments on Implementation of Medicare Drug Price Negotiation Program
NCCS joined with other member organizations of the Cancer Leadership Council (CLC) in a letter to the Centers for Medicare and Medicaid Services (CMS) to comment on the Initial Memorandum for Implementation of the Medicare Drug Price Negotiation Program. In the letter, NCCS and 10 other cancer organizations — representing cancer patients, health care professionals, […]
Lisa Rice – My Breast Cancer Journey: Many Lessons Learned and More in Store
During my final semester of college, a life-changing call came. My mother was in the hospital, waiting for results of a biopsy of a tumor she’d found in her breast. My father told me that she’d already decided, if the tumor was malignant, she would proceed with a radical mastectomy […]
Ruth Travis: Cancer Is Not a Death Sentence. It’s a License to Live.
Ruth Travis knows the power of early detection. She started getting regular mammograms when she was 40 years old. After 22 years, the annual process was nothing new. In 2007, Ruth arrived for her annual screening mammogram […]
NCCS Joins With Patient Advocates and Health Care Professionals to Call on CMS to Ensure Access to DIEP Flap Breast Reconstruction
WASHINGTON, DC, April 3, 2023 – Advocates for individuals in need of breast reconstruction surgery delivered a letter and petition to the Centers for Medicare and Medicaid Services (CMS) today, urging them to reinstate a procedure code that is essential for access to deep inferior epigastric perforator (DIEP) flap breast reconstruction surgery. More than 4,600 […]
NCCS Urges President Biden and Congress to Support and Protect Medicaid
This week, NCCS joined with more than 30 patient advocacy organizations as part of the Partnership to Protect Coverage to urge President Biden and Congress to support and protect the Medicaid program during any upcoming fiscal discussions. The letter calls on the White House and Congress to reject changes to Medicaid’s current financing structure and […]
NCCS Advocates for Access to DIEP Flap Breast Reconstruction Surgery
The National Coalition for Cancer Survivorship recently joined the Community Breast Reconstruction Alliance (CBRA), a group of patient advocacy organizations and health care providers who are working together to advocate for access to deep inferior epigastric perforator (DIEP) flap breast reconstruction surgery. Patient education regarding breast reconstruction includes a review of options, including breast reconstruction […]
Betsy Glosik: A Cancer Survivor’s Journey Towards Integrative Healing and Advocacy
For Betsy Glosik, the early 2000s brought one trauma after another. She lost her aunt to melanoma. Then, tragically she lost her 20-yr old daughter to a car accident. In 2003, after years of mentioning her concerns about a mole on her foot to her dermatologist, and repeatedly having her concerns dismissed, Betsy was diagnosed with melanoma…
Webinar – Implementing the ASCO Guidelines for Exercise, Nutrition, and Weight Management with Your Patients and Practice
The National Coalition for Cancer Survivorship (NCCS) hosted a Survivorship Champions webinar discussing the American Society for Clinical Oncology’s (ASCO) Guidelines for Exercise, Nutrition, and Weight Management and how to best implement them in a clinical setting. Sami Mansfield, founder of Cancer Wellness for Life, and Wendy Demark-Wahnefried, PhD, RD, a professor of nutrition sciences […]
Webinar – How to Lead a Heart Healthy Life – Norrisa Haynes, MD
In this webinar hosted by NCCS, Cardiologist Dr. Norrisa Haynes of Yale University presents the basics of heart disease, including risk factors and the interplay between heart disease and cancer. Heart disease is still the leading cause of death worldwide, despite medical advancements, and can result from risk factors like high blood pressure, high cholesterol, […]
Erin Cummings’s Journey as a Long-Term Hodgkin’s Lymphoma Survivor
Diagnosed with Hodgkin’s Lymphoma during her freshman year of high school at the age of 15, Erin Cummings recalls finding two lumps and not thinking much of them. “Cancer was the farthest thing from my mind,” she said. When her sister later noticed the lumps, Erin finally told her mom and found herself in the hospital […]
Sharon Rivera-Sanchez: Triple Negative Breast Cancer Survivor Finds Passion in Fitness and Advocacy
As a Triple Negative Breast Cancer survivor, Sharon turned her personal experience into a passion for advocacy and giving back to the community. When she received her diagnosis in May 2015, she remembers being in a state of shock and grief. She said, “You have to allow yourself time to breathe and grieve.”
NCCS Celebrates Launch of Comprehensive Cancer Survivorship Act
Representative Debbie Wasserman Schultz (FL-23), a champion for cancer survivors and a survivor herself, held a press conference today to introduce the Comprehensive Cancer Survivorship Act (CCSA), new comprehensive survivorship legislation that will directly benefit cancer survivors. She was joined by Senators Ben Cardin (D-MD) and Amy Klobuchar (D-MN), who will lead the legislation in […]
Alique Topalian: Childhood Cancer and the Frightening Realities of the Survivorship Journey
Alique was first diagnosed with Acute Myeloid Leukemia (AML) at the age of four. Her mother, Michele, knew something was wrong because “the light in her eyes was gone”. After being told by doctors that there was nothing wrong, her family was relentless until new blood work uncovered blast cells.
NCCS Joins Cancer Leadership Council in Urging Congress to Include Priorities in Year-End Package
NCCS joined with other member organizations of the Cancer Leadership Council (CLC) in a letter urging Congress to include several key provisions in an end-of-year legislative package. In the letter, NCCS and 14 other cancer organizations, representing cancer patients, health care professionals, researchers, and caregivers, stressed that action on these issues would enhance cancer patients’ […]
NCCS Presents 7th Annual Ellen L. Stovall Award to Patricia Ganz, MD, and Alicia Staley for their Dedication to Improving Cancer Care
The National Coalition for Cancer Survivorship hosted the 7th annual Ellen L. Stovall Award for Innovation in Patient-Centered Cancer Care Awards Reception on November 16, 2022 in Washington, DC. NCCS proudly presented the 2022 Stovall Awards to two remarkable champions for patient-centered cancer in the cancer community: Patricia Ganz, MD, and Alicia Staley. Laurie Isenberg, […]
Amanda Helms: Care Planning, Mental Health, and Palliative Care are Essential to Quality Cancer Care
Amanda Helms was enjoying a bubble bath while reading a book when she looked down and noticed a lump on the side of her breast in January of 2020. She had a bad feeling about it instantly, even though she had no family history or risk factors. She went to her family doctor who referred […]
NCCS Presents The State of Cancer Survivorship: 2022 Survey Results
The National Coalition for Cancer Survivorship (NCCS) conducts an annual State of Survivorship Survey, in partnership with Edge Research, to delve into the cancer patient and survivor journey. This study captures a range of perspectives to better understand how NCCS can support its mission to advocate for quality cancer care for all. The 2022 State […]
NCCS Mourns the Loss of Lori Wilson, MD, FACS
The NCCS community is mourning the loss of Lori Wilson, MD, FACS. Dr. Wilson was a skilled oncology surgeon, a passionate educator, and a dedicated mother. She was also living with metastatic breast cancer and was a voice for cultural humility in healthcare. She weaved her lived experience into her professional life to give hope […]
Webinar – Exercise Is Medicine in Oncology: Implementation Based on Solid Evidence
NCCS hosted a webinar featuring Kathryn Schmitz, PhD, MPH, a leading researcher in exercise oncology at the University of Pittsburgh Medical Center. Dr. Schmitz’s research focuses on people living with and beyond cancer and investigates the role exercise in improving physiologic and psychosocial outcomes including symptoms, treatment tolerance, and other chronic diseases. Dr. Schmitz is […]
Michael Holtz: Everyone Has a Place in the Advocacy Community
“Everyone has a place in the advocacy continuum: Your lived experience is important.” Michael Holtz didn’t know that the “funky” digestive symptoms in December of 2011 would be the first signs of his cancer diagnosis. These rectal spasms would leave Michael rushing to the bathroom, and either nothing would happen or there would be a […]
Nicole C. Bullock: Faith, Family, and Friends Along the Path of Survivorship
As Nicole C. Bullock, a non-Hodgkin lymphoma survivor, watched the news of hospital lockdowns during the early stages of the COVID-19 pandemic, she couldn’t help but think of the cancer patients who faced the harsh reality that they would now have to receive treatment for their illness alone, without the support of family and friends. […]
NCCS to Recognize Patricia Ganz, MD and Alicia Staley with 2022 Ellen L. Stovall Award
NCCS is pleased to announce the 2022 winners of the Ellen L. Stovall Award for Innovation in Patient-Centered Cancer Care are Patricia A. Ganz, MD, and Alicia Staley. They will be recognized at the 2022 Ellen L. Stovall Award Reception on Wednesday, November 16. NCCS presents the Stovall Award annually to two recipients who have […]
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 […]
