NCCS hosted a conversation this week about managing anxiety, stress, and grief with psychologist Dr. Imani Price and a panel of cancer survivors and advocates. Dr. Price shared tips on how to cope with stress during this unique time and included strategies such as connecting with friends and family virtually, taking time to get outside each day, getting sufficient sleep, and eating well.
Randall Broad, Erin Cummings, Loretta Herring, and Sharon Rivera-Sanchez, all cancer survivors and patient advocates, shared their struggles and advice for coping with the isolation and fear that many cancer survivors are facing during the COVID-19 pandemic.
In her opening comments, Dr. Price said:
The uncertainty of the times is leading to many of us feeling depressed, some of us are feeling anxious, and there’s even secondary PTSD that’s occurring as a result of everything that’s going on. This uncertainty is making many of us feel very vulnerable, and our lives are out of our hands and out of our control. Control of our lives helps us to feel a sense of well-being, and ultimately a sense of safety. Many individuals have shared with me that they are feeling similar to the way they did when they were first diagnosed with cancer. That uncertainty, not quite knowing what this is going to do long-term and how COVID-19 can impact them and their family.
Despite all of the challenges, I’m encouraging everyone to maintain and reclaim control over their lives, despite the hunker-in-place and all the other things that are now in place so that we can stay healthy and safe.
https://canceradvocacy.org/wp-content/uploads/2020/04/Managing-Stress-Webinar-feat.jpg6001200actualizehttps://canceradvocacy.org/wp-content/uploads/2020/06/NCCA-Logo.pngactualize2020-04-17 12:39:542020-07-06 10:20:36COVID-19 and Cancer Panel Discussion: Managing Stress, Anxiety, and Grief During Uncertain Times
Quality measurement in cancer care is primarily focused on ensuring patients get the right tests and treatments, not whether those treatments help cancer survivors live well during and after cancer. NCCS embarked on an initiative to define quality measures by engaging survivors themselves to identify what’s important to measure.
NCCS was awarded a grant from the American Institutes for Research (AIR), with support from the Robert Wood Johnson Foundation, to lead a group of cancer survivors in defining a new quality measure concept: redefining functional status (RFS) following a cancer diagnosis. With a unique project design that put patients in the driver’s seat, NCCS was the only patient advocacy organization selected in a highly competitive selection process.
In this webinar, you will:
Learn how cancer survivors defined the concept of “redefining functional status” and how to measure it;
Hear from project co-leads Shelley Fuld Nasso (NCCS) and Kristen McNiff (KM Healthcare Consulting), as well as survivor committee members, about the project methodology, findings, and lessons learned;
Understand the value in patient advocacy organizations taking a leading role in quality measurement development.
Together, we hope to leverage this project to shape quality measurement and ensure cancer survivors live well during and after cancer treatment.
“Patient-centered measurements are hugely important and I didn’t recognize its value prior to participating in this study. Patients aren’t always comfortable letting their provider know what they are experiencing and having a quality measurement that allows a patient to share their concerns, issues or changes can overcome the fear of speaking up.”
– Matt Goldman, Multiple Myeloma Survivor and RFS Committee Member
“This project has allowed me to step back and look at the larger impact of disease and treatment beyond my own experience. Every individual is unique and affected differently when faced with diagnosis and treatment options. One size, one measure does not fit all patients.”
– Allen Hirsch, Head & Neck Cancer Survivor and RFS Committee Member
https://canceradvocacy.org/wp-content/uploads/2020/02/RFS-Webinar-feat-img.jpg6291200actualizehttps://canceradvocacy.org/wp-content/uploads/2020/06/NCCA-Logo.pngactualize2020-02-07 14:11:582020-07-06 09:54:22Webinar Video – Redefining Functional Status: A Patient-Led Quality Measurement Effort
Health care was the number one issue for a majority of voters in the 2018 midterm elections. With the House majority changing hands and a split Congress, in this webinar we discuss election implications on health care and what to expect in the new Congress. We also provide an overview of how you can connect with new and returning Members of Congress to help them better understand priorities for cancer patients.
Our guest speaker Zach Marshall, former legislative director for Rep. John Yarmuth (KY-3), recaps the midterm elections and what to expect in 2019.
NCCS will continue the conversation in a Part II webinar at the end of January that will provide specifics on engaging with your Members of Congress, particularly new Members. We will have a Member of Congress as our guest speaker to give insights into how to connect with Members and effectively advocate for cancer survivors. Be on the lookout for the Part II webinar registration—you won’t want to miss it! Sign up for our email list to be notified of future webinars »
Featured Speaker: Zack Marshall
Zack Marshall is the former Legislative Director for Congressman John Yarmuth, a position he held for more than four years.
In that role, he managed the Congressman’s legislative portfolio and focused on health and budget policy. Prior to his work with Rep. Yarmuth, Zack spent six years in the office of Congressman Jim Cooper, serving as a Senior Legislative Assistant.
A native of Indiana, Zack moved to DC to work on Capitol Hill after working for President Barack Obama’s 2008 Presidential Campaign.
This webinar is presented by NCCS as part of our educational efforts for our Cancer Policy and Advocacy Team (CPAT) program. Learn more about the CPAT program »
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Those with a cancer experience are all too familiar with the anxiety that many experience wondering and waiting if and how cancer may return. New research is helping shed more light on what exactly “fear of cancer recurrence” means as a measurable patient outcome, psychological and emotional factors that may increase or decrease it, and what steps can be taken by patients and providers to help reduce it.
Joining us to discuss fear of recurrence is Sarah Reed, MSW, MPH, PhD, of the Betty Irene Moore School of Nursing at UC Davis. You’ll hear Dr. Reed discuss new research—including her own—that seeks to more clearly define fear of recurrence and its impact on cancer patients. Read more about Dr. Reed’s background below.
Mindfulness-Based Stress Reduction (MBSR) – Dr. Reed mentioned MBSR during the webinar as a potential therapy to alleviate Fear of Cancer Recurrence. Below are links to resources and books she recommends on the topic.
Mindfulness-Based Cancer Recovery: A Step-by-Step MBSR Approach to Help You Cope with Treatment and Reclaim Your Life, by Linda Carlson, PhD, RPsych, and Michael Speca, PsyD, RPsych – Amazon.com link
Being Well (Even When You’re Sick): Mindfulness Practices for People with Cancer and Other Serious Illnesses, by Elana Rosenbaum – Amazon.com link
Here for Now: Living Well With Cancer Through Mindfulness, by Elana Rosenbaum – Amazon.com link
About the Presenter: Sarah Reed, MSW, MPH, PhD
Sarah Reed is a postdoctoral scholar in the Betty Irene Moore School of Nursing at UC Davis, mentored by Associate Dean for Research Janice Bell. Her research focuses on vulnerable populations and issues of health inequality, including the effect of health transitions on mental health, particularly in cancer survivors.
Reed’s ongoing work examines psychosocial concerns; specifically, fear of cancer recurrence and health behaviors in cancer survivors — addressing a significant gap in the understanding of the psychosocial health and related needs of the growing population of cancer survivors. She collaborates with a range of interprofessional researchers on projects aimed to improve health outcomes of patients with cancer.
Prior to joining the School of Nursing, Reed was an assistant professor in the Jane Addams College of Social Work at the University of Illinois, Chicago (UIC), where her work focused on cancer and issues related to racial, social and economic justice.
She has been a clinical social worker for close to two decades, most recently in the Adult Survivorship Program at the Dana-Farber Cancer Institute in Boston. There, Reed developed and managed psychosocial survivorship care and programs.
This webinar is presented by NCCS as part of our educational efforts for our Cancer Policy and Advocacy Team (CPAT) program. Learn more about the CPAT program »
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President Donald Trump and the Republican leadership in Congress will soon be making good on their campaign promise to repeal the Affordable Care Act (ACA). While replacement plans have been proposed, there is no consensus on an alternative. As patient advocates, we have a responsibility to rise above the politics and speak up for the needs of survivors. We are very concerned about what these actions mean for cancer survivors and their access to quality and affordable health care.
Yesterday, NCCS hosted a webinar titled, “Affordable Care Act Update: What Advocates and Cancer Survivors Need to Know,” which you can view in full below. During this webinar, you will hear from the team at NCCS and Monica Bryant of Triage Cancer on where the ACA stands now, what a replacement health care plan might look like, and what this all means for survivors and advocates going forward. A recent analysis by the Congressional Budget Office shows that without a replacement plan, in the first year after repeal, there would be 18 million more uninsured and premiums would rise 20-25%. The time for education and advocacy is now.
Webinar Summary
The webinar begins with an introduction by Lindsay Houff, Policy Manager at NCCS. Lindsay gives some background information about the Affordable Care Act—how it was passed, the main reforms created by the bill, and potential strategies Republican lawmakers will use to repeal it.
For her presentation, Monica Bryant, COO of Triage Cancer, starts with a list of consumer benefits that the ACA provides. She breaks down the three main sources of health coverage for Americans (employer-based, the individual marketplace, and Medicare/Medicaid) and how a full repeal of the ACA would impact each group. “The reality is that everybody who has health insurance in this country is going to be impacted,” Ms. Bryant said. She also addresses how ACA repeal could affect cancer survivors in particular.
After the presentation, Ms. Bryant and the NCCS staff answer a number of questions from the webinar participants, and discuss tips for contacting your lawmakers and advocating against a full repeal of the ACA.
Monica Fawzy Bryant, Esq. Chief Operating Officer
Triage Cancer
Monica Fawzy Bryant, Esq. is a cancer rights attorney, speaker, and author, dedicated to improving access to, and availability of, quality information on healthcare-related issues. Monica is the Chief Operating Officer for Triage Cancer, a national, non-profit organization that provides education and resources on cancer survivorship issues.
Previously, Monica was Midwest Regional Director for a national cancer rights organization she forged relationships with cancer organizations, hospitals, law firms, other community partners, and members of underserved communities. Prior to relocating to Chicago, Ms. Bryant served as Legislative Counsel for U.S. Congresswoman Linda T. Sanchez and Law Clerk for U.S. Senator Dianne Feinstein. During her time in Congress, Ms. Bryant focused on health, justice, civil rights, and women’s issues. She was also heavily involved in the nomination hearings for United States Supreme Court Chief Justice John Roberts and Justice Samuel Alito.
Throughout her career, Monica has provided hundreds of educational seminars, written articles and blogs, and appeared on community television and radio shows discussing healthcare-related legal issues. Additionally, Monica is an Adjunct Law Professor at John Marshall School of Law in Chicago, teaching a class on Cancer Rights. Monica currently serves on the Executive Committee of the American Bar Association’s Breast Cancer Task Force.
Monica received a Bachelors of Arts degree in Law & Society, with an emphasis in criminal justice, and Psychology from the University of California Santa Barbara and a Juris Doctor from The George Washington University Law School. She is a member of both the California and Illinois State Bars.
“Perhaps one of the most impactful collaborations in Dr. Brereton’s extraordinary career remains his early work and long friendship with Ellen Stovall. Through him, and in turn through the thousands of lives he has touched, Ellen’s work continues, and her mission lives on.”
—Karen M. Saunders
President, Northeast Regional Cancer Institute
Featured Speaker: Zack Marshall
About the Presenter: Sarah Reed, MSW, MPH, PhD
