The Not-So-Good Cancer: Mary Glen’s Inspiring Advocacy Journey
Advocate Spotlight: Mary Glen Mary Glen was serving as an active-duty Army officer, deployed to South Korea in August 2020. Just 24 years old, Mary recalls feeling fatigued, experiencing bouts of depression, hair loss, and brittle nails, but her symptoms were initially attributed to the stress of deployment. “In the Army, the doctor who deploys […]
NCCS Presents 8th Annual Ellen L. Stovall Awards to Phuong Gallagher and Mary McCabe, RN for Their Innovation and Dedication to Cancer Survivors
FOR IMMEDIATE RELEASE October 30, 2023 Washington, D.C. – The National Coalition for Cancer Survivorship (NCCS) presented the 8th annual Ellen L. Stovall Award for Innovation in Patient-Centered Cancer Care to Mary McCabe, RN, MA and Phuong Gallagher on October 26, 2023. Named for former NCCS CEO, Ellen Stovall, who died in 2016 from long-term […]
NCCS, Cancer Leadership Council Express Strong Support for NIH Director Nominee Monica Bertagnolli
The National Coalition for Cancer Survivorship (NCCS) strongly supports the nomination of Dr. Monica Bertagnolli to be the Director of the National Institutes of Health (NIH). A surgical oncologist, researcher, and cancer survivor, Dr. Bertagnolli has served as Director of the National Cancer Institute (NCI) since 2022. NCCS joined other member organizations of the Cancer […]
The Path to Purpose: Marlena Murphy Finds Meaning in the Challenges
Advocate Spotlight: Marlena Murphy Marlena Murphy’s cancer journey began when she discovered a lump in her left breast during her monthly self-check in May 2018. It was a moment that would change her life forever. Marlena contacted her primary care physician and was immediately scheduled for a diagnostic mammogram. Ultrasound imaging and a biopsy followed, […]
NCCS Presents The State of Cancer Survivorship: 2023 Survey Results
The National Coalition for Cancer Survivorship (NCCS) conducts an annual State of Survivorship Survey, in partnership with Edge Research, to explore the cancer 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 everyone touched by cancer. The research was […]
Brett Wilson – Navigating Childhood Cancer and Finding Purpose in Advocacy
Advocate Spotlight: Brett Wilson Brett Wilson’s cancer experience started when she was just two years old. Her mother was concerned because she was sleeping a lot, so she took her to the doctor. Diagnosed with Acute Lymphoblastic Leukemia (ALL), her family was told she had little chance of survival. Her father remembered learning she wasn’t […]
NCCS Submits Comments on 2024 Medicare Physician Fee Schedule Proposed Rule
NCCS submitted a letter to the Centers for Medicare and Medicaid Services (CMS), offering comments on the Medicare physician fee schedule proposed rule for calendar year 2024. NCCS also joined members of the Cancer Leadership Council (CLC) in submitting additional comments in a separate letter. In the letters, NCCS expressed strong support for the proposals […]
Registration Open: 2023 State of Survivorship Survey Results Briefing | October 3
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. NCCS worked with […]
CMS Announces It Will Retain Breast Reconstruction Codes, A Reversal That Protects Patient Access to DIEP Flap Surgery
Yesterday, the Centers for Medicare and Medicaid Services (CMS) announced that it will retain procedure codes for breast cancer reconstruction, after hearing feedback from NCCS and other patient advocates, patients, and health care professionals. NCCS asked CMS to retain the S codes for breast reconstruction, so that people in need of breast reconstruction have access […]
Championing Survivorship: Woody Brokenburr’s Lifelong Dedication to Cancer Advocacy
Woodrow “Woody” Brokenburr was diagnosed with cancer when he was 9 years old, after a biopsy revealed that the lump on his left thigh was osteosarcoma. In the 1960s, pediatric cancer care was challenging, even more so for Black children living in the racially segregated south, as access to quality care was limited. Effective chemotherapy […]
NCCS Announces New Elevate Ambassadors Selected to Improve Survivorship In Their Communities
The National Coalition for Cancer Survivorship (NCCS) is proud to announce the participants of the 2023 – 2024 Elevating Survivorship program. After a competitive application process, NCCS selected 10 individuals from across the United States to serve as Elevate Ambassadors. The Elevate Ambassadors will receive mentorship, support, networking opportunities, and training to develop and execute a […]
NCCS to Recognize Phuong Gallagher and Mary McCabe, RN, with 2023 Ellen L. Stovall Award
NCCS is pleased to announce the 2023 winners of the Ellen L. Stovall Award for Innovation in Patient-Centered Cancer Care are Phuong Gallagher and Mary McCabe, RN, MA. They will be recognized at the 2023 Ellen L. Stovall Award Reception on Thursday, October 26, 2023. NCCS presents the Stovall Award annually to two recipients who […]
Championing Survivorship: Nurse Practitioner Sanna Ali’s Dedication to a Career in Cancer Survivorship
Sanna Ali is a dedicated Nurse Practitioner currently pursuing her PhD in Nursing at The George Washington University. Sanna started her nursing career as a registered nurse in an inpatient pediatric hematology oncology unit. She shares that working with childhood cancer patients had one of the most profound impacts on her life. “The experience was […]
NCCS Board Member in STAT News Op-Ed: CMS must protect access to the ‘gold standard of breast reconstruction’
STAT News recently published an op-ed by NCCS Board Vice Chair Lisa D. T. Rice on the threat to access of DIEP flap breast reconstruction surgery. In 1983, I flew home from college to be with my mother as she woke up from a mastectomy. She opted out of breast reconstruction, choosing to “go flat” […]
NCCS Applauds the Re-Introduction of the Comprehensive Cancer Survivorship Act (CCSA)
On Friday, Representatives Debbie Wasserman Schultz (D-FL-25), Brian Fitzpatrick (R-PA-1), and Mark DeSaulnier (D-CA-10) and Senators Amy Klobuchar (D-MN) and Ben Cardin (D-MD) reintroduced H.R. 4363/S.2213, the Comprehensive Cancer Survivorship Act (CCSA). This bipartisan legislation addresses the health of cancer survivors throughout the entire continuum of care – from diagnosis to active treatment and post-treatment […]
Arsenic and Advocacy: Sarah Cohn’s Experience with Rare Leukemia Spurs Action
Diagnosed with a rare form of leukemia called acute promyelocytic leukemia (APL), Sarah Cohn’s cancer diagnosis at the age of 30 took her by surprise. Sarah had just started a new job when symptoms appeared. “For survivors, it seems like there is always one thing that happens that leads directly to their diagnosis, and then […]
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 […]
