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
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.
For six years now, the Affordable Care Act (ACA) continues to successfully improve health care in America. It provided coverage to 20 million people, allowed young adults to stay on their parents’ insurance until 26, emphasized preventative care, and sought to address inequalities in care, especially for women. For cancer patients and survivors, the impact of the ACA cannot be overstated. It is providing new hope by making coverage more affordable, increasing access to more life-saving treatments, and reducing significantly the fear and anxiety felt by so many cancer survivors by eliminating pre-existing conditions and life-time coverage limitations.
Without question, as health insurance markets and insurers work through these changes, the cost of coverage remains high for many people and is impacting some small businesses. Measures in the ACA that seek to address these issues are often overlooked and critically important: innovations in payment and delivery reform that are working to fundamentally overhaul America’s health care system, seeking to improve the quality of care and reduce costs.
As an excellent article in the New York Times states, “the law is leading a transformation of America’s health care system. It’s a change that nearly everyone, Republicans and Democrats, agrees is desperately needed — and for it to happen, the relevant parts of the A.C.A. must be preserved. The transformation moves health care away from a fee-for-service model, which pays doctors and hospitals according to the number of procedures they do, toward value-based care, which pays based on what helps patients get better.”
Barbara McAneny, MD CEO, New Mexico Cancer Center
Friend of NCCS, and speaker at our Fall 2016 Cancer Policy Roundtable (CPR), Dr. Barbara McAneny is also featured in the article. Dr. McAneny is the Chief Executive Officer at the New Mexico Cancer Center. “We treat a lot of poor people,” McAneny said. “Their biggest co-pay was when patients went into the hospital. And even if they didn’t get one of the bad infections or blood clots, every hospitalization resulted in lowered quality of life. There’s a lot we can’t control. But we could control whether we aggressively managed side effects of cancer and its treatment to keep people out of the hospital.”
Watch: Dr. McAneny’s remarks at the CPR where she highlights her approach called the Community Oncology Medical Home model (COME HOME), and the difference it can make in the life of an individual patient.
What I am seeing, as we look at that graph where practices are selling to hospitals, and the exact same care now costs us more in a society that cannot afford it, is that we have to act very soon. We have to get back to saying, how do we get the low-cost practices that can deliver the quality? How can we give those resources and tools to physicians so that they and their practices can take a practice and meet the needs of their individual community in a very cost-effective way?
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Guest Post by Virgie Townsend Advocate, Caregiver, and NCCS CPAT Member
I am the mother and caregiver for my son who was diagnosed with biphenotypic leukemia in March of 2011. Being there for my son gave me a first hand look at what cancer survivors go through. I think most of us have been touched by cancer in some form. We might have experienced it with a family member, friend, co-worker or even ourselves. My experience left me knowing that I could no longer be passive while cancer was active in my son’s life and others. I knew I had to jump in the ring and fight back, but I was unclear how.
Attending the NCCS Cancer Policy and Advocacy Team (CPAT) Symposium in June of 2016 was a game changer for me. It allowed me to focus and gave me direction. As we prepared for Hill Day, I thought I would be nervous or intimidated. To the contrary, hearing the stories of survivors and other advocates ignited me. On Hill Day I met with my representatives’ staffers to urge them to support the Planning Actively for Cancer Treatment (PACT) Act. NCCS staff said they could feel my passion as I shared my personal story to illustrate the critical need to improve care coordination and care planning.
From this point on I knew that I must advocate for improved quality of life for cancer survivors. Since then, I became a member of the University of Alabama Birmingham (UAB) Medicine’s Patient and Family Advisory Council and UAB Medicine’s Speakers Bureau. I also attended the American Association of Cancer Researchers’ (AACR) Disparities Conference and did a poster presentation.
I am so thankful that I attended the CPAT Symposium. It changed my life.
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This week, NCCS hosted the latest CPAT webinar, Cancer Moonshot: Symptom Management and Funding. The featured presenters were Deborah K. Mayer, PhD, RN, AOCN, FAAN; and MK Holohan, JD. Dr. Mayer is the Director of Cancer Survivorship at the UNC Lineberger Cancer Center and a member of the Cancer Moonshot Blue Ribbon Panel. Ms. Holohan is the Director of Government Relations at the National Cancer Institute (NCI).
In the webinar, Dr. Mayer walked through the process and structure of collaboration in the Moonshot initiative and described in detail her work on the Moonshot initiative’s Blue Ribbon Panel. Dr. Mayer highlighted the Blue Ribbon Panel’s recommendations, specifically focusing on the recommendation to minimize treatment side effects and what that means for cancer survivors. Ms. Holohan detailed how the Cancer Moonshot initiative could be funded in Congress, as well as potential barriers to achieving that funding. Ms. Holohan also talked about the 21st Century Cures Act, and the possibility it will be considered in the lame-duck session.
After their presentations, the speakers engaged in a short Q&A.
Cancer Moonshot Task Force Report: This report describes activities and an implementation plan for achieving the Cancer Moonshot’s goals.
Blue Ribbon Panel Report: This report was presented to the National Cancer Advisory Board in September. The final report describes 10 transformative research recommendations for achieving the Cancer Moonshot’s goal of making a decade’s worth of progress in cancer prevention, diagnosis, and treatment in just 5 years.
This webinar is a part of the Cancer Policy and Advocacy Team (CPAT) program. The goal of this program is to prepare advocates to be fully engaged in cancer care policy initiatives now and in the future. While this webinar concludes the 2016 CPAT events, we will soon be launching new programming in early 2017 including our in person symposium which will be held in June 2017 in Washington, DC. More information about that and additional webinars will be available in 2017. To join CPAT, please complete this brief questionnaire.
From left to right: Jonathan Stovall, Douglas W. Blayney, and Shelley Fuld Nasso
At the National Coalition for Cancer Survivorship’s (NCCS) 30th Anniversary Reception on October 13, 2016, NCCS presented the inaugural Ellen Stovall Award for Leadership in Patient-Centered Care. The award was created to honor former NCCS CEO Ellen Stovall, who led the organization for more than twenty years and passed away in January 2016 from complications related to her cancer treatments.
The award recipient was Douglas W. Blayney, MD, FACP, past president of the American Society of Clinical Oncology (ASCO) and who worked closely with Ellen Stovall for many years. Together they helped initiate the ASCO Quality Symposium, which has become the leading cancer quality meeting in the world.
Shelley Fuld Nasso Remembers Ellen Stovall
NCCS CEO Shelley Fuld Nasso thanked the attendees to the NCCS 30th anniversary reception, many of them current and former NCCS staff and colleagues of Ms. Stovall, for their contributions to the field of cancer survivorship. “Everyone in this room today has helped in some way have an impact on our work over the past 30 years and on the lives of people with cancer,” Ms. Fuld Nasso said.
She continued, “As we commemorate this milestone in our history, we also, of course, have to recognize the devastating loss that we at NCCS felt, and all of us in the cancer community, when Ellen Stovall passed away earlier this year–our former CEO, dear friend, and mentor… Ellen left an indelible mark on all of us… She’s really our guiding light at NCCS and I often find myself thinking, ‘What would Ellen do?'” After a short video tribute to Ellen’s life and advocacy, Shelley invited Ellen Stovall’s son, Jonathan Stovall, on stage to present the award named in his mother’s honor.
Dr. Blayney Accepts the Ellen Stovall Award
In her introduction, Shelley Fuld Nasso highlighted the collaborative efforts of Dr. Blayney and Ms. Stovall. “Dr. Blayney did not shy away from Ellen’s demands that much more needed to be done to ensure access to patient-centered care, or her insistence that patient satisfaction with their cancer care really did matter. Instead, he was a dedicated partner in these efforts.” She continued, “When Ellen and Doug were working shoulder to shoulder on a wide range of cancer quality improvement efforts, they were pioneers. Not all their peers supported, or even saw the point of all their dogged efforts to improve quality.”
Dr. Blayney accepted the inaugural award and honored Ms. Stovall’s work and advocacy for cancer survivors in his remarks. “Ellen was a living reminder of cancer survivorship,” said Dr. Blayney. “She lived her life with purpose and never-failing grace. She articulated for so many audiences, the purpose of our work, and reminded us that it was always about the patient. I am honored with the Stovall award.”
Douglas W. Blayney, MD, FACP is a professor of medicine at the Stanford Comprehensive Cancer Center. His clinical interest is breast cancer, and his operational interests and research focuses on quality improvement in cancer care systems, improvement of the patient experience, and the optimum use of information technology to enhance these missions. He is past president of the American Society of Clinical Oncology (ASCO), and was the founding editor-in-chief of ASCO’s Journal of Oncology Practice.
The Ellen Stovall Award: 2017 and Beyond
At the reception, NCCS announced that beginning in 2017, the Ellen Stovall Award will be an annual, nationwide competition. It will be the first call to action that specifically urges cancer survivors and caregivers to nominate providers who are making dramatic improvements in how they care for cancer patients and their families. With recent changes in care towards value-based reimbursements and the Oncology Care Model, NCCS seeks to highlight providers who are proactively and successfully embracing patient-focused care that is recognized by the very patients they are serving. Dr. Blayney will serve as co-chair of an advisory committee to establish the award’s criteria and evaluate nominations.
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On February 24, 2016, a tribute to celebrate the life and legacy of Ellen Stovall was held at the Carnegie Institution for Science in Washington, D.C. Family, friends, and colleagues shared their touching memories about a woman who was dedicated to her family, a three-time cancer survivor, and a tireless advocate on behalf of all those touched by cancer. A video recording of the entire memorial service is embedded below. Please continue sharing your thoughts and remembrances about Ellen Stovall by signing her guestbook.
Sandy Welton, Board Chair of NCCS, welcomes the crowd and reads a letter from Vice President Joe Biden Barbara Hoffman, JD and Dr. Fitzhugh Mullan, founding members of NCCS Dr. Richard Pazdur, FDA
Part Two
Dr. C. Norm Coleman, National Cancer Institute U.S. Rep. Lois Capps (D-CA), Sponsor of The PACT Act Elizabeth Goss, JD of Turner & Goss LLP
Part Three
“Ellen Stovall: One Person Can Make a Difference” Video Presentation Sig Roos, cousin of Ellen Julia Rowland PhD, Director, Office of Cancer Survivorship, NCI Shelley Fuld Nasso, CEO of NCCS
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This post is part of our 20 Years Later blog series which examines progress in advancing the principles in the 1995 NCCS publication Imperatives for Quality Cancer Care: Access, Advocacy, Action, and Accountability (Imperatives). The Twelfth Principle states, “Cancer survivors, health care providers and other key constituency groups must work together to increase public awareness; educate consumers, professionals, and public policy makers; develop guidelines and disseminate information; advocate for increased research funding; and articulate for and promote survivors’ rights.”
In 1995, NCCS published “Imperatives for Quality Cancer Care,” an influential publication that represented a new approach to defining quality cancer care from the patient perspective. Throughout 2015, the 20th anniversary of the Imperatives, we have revisited the issues and measured the progress made in twenty years of advocacy through a special series of videos, guest posts, and commentaries. For the final post in the series, Dr. Julia Rowland, the current Director of the Office of Cancer Survivorship, discusses the history and impact of the Imperatives document, the progress made in cancer survivorship in the last 20 years, and some of the current challenges the field of survivorship faces. The video is split into three parts.
Part One: A History of the Imperatives Document
VIDEO TRANSCRIPT:
“In some ways, people look back and say, ‘Twenty years later? The rest is history.’ We took off.”
I’m delighted to talk about the Imperatives for Quality Care, having been one of the co-editors of that important document. It was a series, actually, originally a white paper, as you probably already know that, with a variety of different professionals across the country contributing to pieces of that. A lot of us had input into it. A lot of us were clinicians and researchers working in the field as well as advocates to say, “What is happening, what isn’t happening, and where do we need to take the science?” That wonderful document, which Ellen [Stovall] very boldly took to the then-director of the National Cancer Institute, Richard Klausner, and said, “Rick, I think you need to read this.” And as the story goes, he took it on some flight, he was going overseas on travel, read through this, speed reader, brilliant mind, came back, didn’t even stop at “GO,” i.e. at his own institute. He went down to Congress and said, “I’m creating this office, this Office of Cancer Survivorship, because we need answers and we need you to be supporting the science that’s going to provide us with the information about what happens to people after cancer treatment.”
So, almost unilaterally, based on that document, he created the Office of Cancer Survivorship. There was a lovely Rose Garden ceremony in October of 1996, establishing the office. There’s a great picture of Bill Clinton signing the Ribbon of Hope, Ellen Stovall is there, Rick Klausner is there—a picture of which I have and I often want to trot out for new NCI directors to say, “See? See? We have this signed document, you know, make sure we’re putting moneys into the office!” And that was kind of the beginning of the attention paid within the [NCI] to survivorship issues, because it had not really been front and center for the Institute, and in some ways, people look back and say, “Twenty years later? The rest is history.” We took off. I often like to think that this office and this science is where the heart of the Institute is, because it’s all about the people who are touched by cancer and its treatment. The people, the families, the communities… we’re trying to figure out what that impact is and, you know, prevent adverse outcomes or mitigate them when they happen. So that’s really the driver behind the office. I’m very privileged… I’m not the original director, it was Anna Meadows, a fabulous world-class pediatric oncologist. In fact it’s been our pediatric survivors who have been the vanguard of the survivorship movement, because there we’ve had our greatest success stories. I came onboard as the first full-time Director in 1999, and I’ve been the Director ever since, which has been for me, a deeply humbling and privileged position to hold for these many years—to see this whole field really take off, starting with the Imperatives document.
Cancer survivorship now owns its own place on what we look at as the cancer control trajectory, that we often think of as starting with primary prevention, detection, treatment, and then we used to jump to end of life. And we’ve realized, no, the vast majority of people are going to have this very long period of living simply with a history of this—and may die of something actually unrelated to their cancer. Understanding what that long trajectory is, probably the longest in most survivors’ lives is going to be that period post-treatment—whether they have a recurrence and are retreated or not, that’s a very big block of time. So, it now exists as its own area of expertise and we have a lot more information about what are some of the kinds of problems that individuals face that patients used to come back and tell their clinicians about and be dismissed? “You know, doctor, I’m feeling tired and it’s three months since treatment ended, when is this going away?” “I can’t remember a thing.” “When’s my sex life going to revitalize?” “Will these pain syndromes resolve?” “Do I need to worry about another cancer, and if so what kind and what can I be doing about that?” “Am I at other risks for different kind of comorbid conditions—heart disease, bone health?” “What’s my life going to be like afterwards? What can I be doing about that?”
And I think we’re much more sophisticated now. I think we realize that those dialogues are important. Certainly, the Coalition [NCCS] with the redefinition of what it means to be a survivor from diagnosis to end of life has changed the dialogue. And we’ve seen that happen, so those conversations are happening now at the time of diagnosis, so people are making informed decisions. And we now are beginning to have the data to say how many might be infertile? And what are infertility interventions? Can we bring those forward? How many people may be at risk for fatigue and can we mitigate that? I think we’re seeing much more in the way of addressing those concerns and not dismissing them and saying, “Oh we don’t need to worry about that.” We do. That’s very much a part of care today.
Part 3: Survivorship Moving Forward, New Challenges
VIDEO TRANSCRIPT:
“[Caregivers are] an important part of care, and yet, we don’t really understand how to support them, how to best train, or educate them about what their role is, give them the skills that they might need to really help a loved one through a course of treatment and beyond.”
Things we know less about are now, “What is the appropriate medical care?” I think we’re struggling to try and figure out how do we care for these millions of individuals who happen to have a history of cancer and who are back in the healthcare system? What kind of followup do they need? Do we need to be doing something special for them or different from them? Can we, in this new wave of therapies that are being developed, develop less toxic treatments? I think that is a continuing focus, and a challenge for us. Are we going to answer it with molecularly-targeted agents? I don’t know. I think we don’t have the answer for that. But I do know that any of those new treatments, unlike in the past, aren’t going to be just taken out into the community, they’re going to be looked at in regard to their long-term effects. That’s because we now think about survivorship from day one and going forward. That’s a very different world in which we live.
Another growing area to be concerned about is caregivers. We’ve suddenly realized, “Oh my gosh! That was in the definition of survivor!” Caregivers are included in that definition of who constitutes a survivor. And we’re only just recognizing, you know, we’re not meeting their needs. They’re an important part of care, and yet, we don’t really understand how to support them, how to best train, or educate them about what their role is, give them the skills that they might need to really help a loved one through a course of treatment and beyond. And take care of their own health if they may be at increased risk. Big new area that we need to be thinking about.
And perhaps a final one that we know very little about… Surprisingly lots of research we’ve seen with young survivors, because that’s been our vanguard group, we actually know very little about older people who live with a history of cancer. Those 65 and older, it’s a gap area, it’s shocking because that’s going to be the fastest growing survivor group in the country because of the baby boom generation—and the fact that cancer is a disease associated with aging. We have really no data on what we need to be doing for older adults and their caregivers and their networks and their providers. What are we going to tell them about caring for themselves? About the care they should be pursuing? About what kind of interventions may be needed for them in particular? And how do we do that?
About the Guest:
Julia Rowland, PhD is the Director of the Office of Cancer Survivorship (OCS), Division of Cancer Control and Population Sciences (DCCPS), at the National Cancer Institute (NCI). Since she assumed the position of full-time Director of the OCS in 1999, Dr. Rowland has sought to champion the visibility of and investment in cancer survivorship research both within the Institute and across other federal and non-governmental agencies, and to raise public awareness about the health and quality-of-life needs of the growing population of cancer survivors and their families.
The views or opinions expressed in any guest post featured on our site are those of the guest author and do not necessarily reflect the opinions or views of the National Coalition for Cancer Survivorship. Read our blog and comment policies here.
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This post is part of our 20 Years Later blog series which examines progress in advancing the principles in the 1995 NCCS publication Imperatives for Quality Cancer Care: Access, Advocacy, Action, and Accountability (Imperatives). The Twelfth Principle states, “Cancer survivors, health care providers and other key constituency groups must work together to increase public awareness; educate consumers, professionals, and public policy makers; develop guidelines and disseminate information; advocate for increased research funding; and articulate for and promote survivors’ rights.”
Meghan Gutierrez, CEO of the Lymphoma Research Foundation (LRF) sat down with us at our Cancer Policy Roundtable last month to talk about LRF’s patient tools and advocacy programs and how they have evolved to meet the needs of lymphoma and CLL survivors. To learn about becoming an advocate for lymphoma, go to lymphoma.org/advocacy.
VIDEO TRANSCRIPT:
The Lymphoma Research Foundation’s mission is to eradicate lymphoma and serve those touched by this disease. Over the past two decades, we’ve seen tremendous strides made in the treatment and understanding of lymphoma and CLL. Patients have more treatment options than ever before. We also know that patients really want their voice to be heard. They want to advocate, not only for their own treatment options, but they also want to advocate for greater investment for lymphoma research. They also want to ensure that they are being heard in the treatment development process.
As we’ve learned more about lymphoma and CLL, the foundation’s education programs have likewise needed to evolve. Our in person programs are still a primary way in which patients access disease-specific information produced by our foundation. But as information about lymphoma has involved, so have the ways in which we reach patients and their caregivers. This includes online content, webcasts, podcasts, webinars, teleconference, and even the development of the nation’s first ever lymphoma-specific mobile app, Focus on Lymphoma.
Over the past several years, we’ve seen an increase in the number of patients and caregivers who wish to make their voice heard as a part of the public policy-making process. Through the Lymphoma Research Foundation’s advocacy program, more than 5,000 grassroots advocates across the country have ensured that they make their voice heard in Washington, DC. A wide range of policy programs have encompassed our public policy agenda at LRF. Patients advocate for greater federal investment in lymphoma and cancer research. They’ve also sought to create a reimbursement mechanism for cancer care planning, which we know is so important for all cancer patients. They’ve also sought to educate lawmakers on oral therapies, on new treatment modalities for lymphoma patients, and access to new and novel targeted therapeutics for lymphoma and CLL patients.
About the guest: Meghan Gutierrez is Chief Executive Officer (CEO) of the Lymphoma Research Foundation (LRF), the nation’s largest non-profit organization devoted exclusively to funding lymphoma research and providing patients and health care professionals with critical information on the disease.
Gutierrez has focused her entire career in the government and philanthropic sectors, beginning as a Congressional staff member for one of the U.S. House of Representatives’ foremost leaders on health care policy, then shifting to the non-profit arena, working on an array of health-related issues, ranging from mental health parity and rare disease awareness to medical technology and the treatment of chronic disease.
The views or opinions expressed in any guest post featured on our site are those of the guest author and do not necessarily reflect the opinions or views of the National Coalition for Cancer Survivorship. Read our blog and comment policies here.
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This post is part of our 20 Years Later blog series which examines progress in advancing the principles in the 1995 NCCS publication Imperatives for Quality Cancer Care: Access, Advocacy, Action, and Accountability(Imperatives). The eleventh principle states that “Psychosocial research is integral to comprehensive cancer care and, as such, psychosocial outcome measures should be included in all future clinical trials. The importance of this research and its application and transfer to oncology care plans should be recognized and encouraged.”
Video Transcript:
So I think it’s well-recognized and certainly from the advocate community we’ve heard time and again that cancer doesn’t affect just a body part, it affects the whole person, and often not just the person but family members and communities. So, attending to that is very important and is an integral part of care. And we’ve seen that come out in multiple different ways, perhaps the most spectacular is the IOM report on “Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs.”
I have to say I was in the privileged position of being the program officer on that particular contract to the IOM. So we were able to write in the request to the people who were going to come together and put that report together to say don’t tell us just the problems, tell us how we’re gonna answer that. And I think that volume does a great job of saying that it has to be part of comprehensive care, that we have to be evaluating people, so if you look at the framework it says we need to be evaluating people, if there’s a problem we need to be connecting them with referral resources, and to me the most critical part is that we follow back.
So if I see a patient and I say, “this patient is depressed and I’m going to refer the patient to a psychiatrist or for some therapy or I’m gonna make a drug prescription,” it’s not enough that I’ve done that. I need to do that, I need to ask, and I need to make the referral, but if I don’t follow back I haven’t done my job. And that, in some ways, is the little piece that we struggle most with in a clinical setting is the follow back. Did it work? Or did I send you to someone, you didn’t go, or you went and you hated the person, or they gave you a prescription but you didn’t fill it, or you filled it and had side effects and stopped using it or threw the pills out, or felt that you were dismissed in some way. I have to follow back. That’s really critical.
So psychosocial care, I think, we know has to be part of the standard of care. We struggled a little in the clinical setting with that because I think physicians have been overwhelmed with managing treatment. But as we’ve gotten better at managing treatment I think we realize how important the psychosocial and behavioral components are, and we’re seeing that embraced more often in the clinical setting.
To do that, I think, you have to walk on all sides. You have to talk to patients and families about it, you have to talk to clinicians, you have to work with systems so that there’s a way to pull up that information right away, evaluate somebody’s status with it, and communicate among all the players what’s gonna be done about this. So there are lots of places where we need to be building systems and having conversations about how to really deliver on what we know is appropriate care. When I think of the research portfolio, what’s fascinating to me is the field of cancer survivorship was originally built on psychosocial studies, not medical outcomes. So a slight twist in that is our pediatric survivorship studies actually first looked at medical outcomes and they’re now coming back and looking at employment, relationships, social functioning. Whereas in the adult arena, a lot of the work was on coping, and psychological adaptation and not so much on fatigue, or pain, or chemobrain that we’re seeing now. So we’re seeing this sort of complementary shift in peds and adult, in part on the adult side is because people are living longer and we need to be addressing not just the medical sequelae, but the psychosocial hand in hand.
And I think in the adult world, the legacy was actually, we used to think about helping people die with their disease, so the focus on coping and emotional well-being was very big when we thought of survivors because we’re gonna help them die of their disease and not live with it. But once we started saying, “oh wait a minute, they’re gonna live with it,” then we had to shift gears and say, “Okay, so your emotional is gonna be driven by the fact that you have these pain syndromes and that your intimate life is ruined by this and we need to address that if we’re going to help you cope with this illness.” So we’ve seen that now come back and be better integrated in the care of adults because we expect them to be there. And we expect survivors to talk about it and bring it up and that’s not easy.
We have all this technology and it’s wonderful, but if you’re feeling really sick, it’s hard for you to use that and exercise that option. You do need to have advocates advocating for you, loved ones who come to the clinic to say, “Well, you know Jessie’s really been fatigued lately,” or “John has really been yelling at the kids lately,” so that you have resources to help you get the care that you need. So it has to be a dialogue, we have to be engaging all of the parties. And it’s moving. I think we’re seeing that science move forward.
About the guest: Julia Rowland, PhD is the Director of the Office of Cancer Survivorship (OCS), Division of Cancer Control and Population Sciences (DCCPS), at the National Cancer Institute (NCI). Since she assumed the position of full-time Director of the OCS in 1999, Dr. Rowland has sought to champion the visibility of and investment in cancer survivorship research both within the Institute and across other federal and non-governmental agencies, and to raise public awareness about the health and quality-of-life needs of the growing population of cancer survivors and their families.
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https://canceradvocacy.org/wp-content/uploads/2015/01/20years.gif500500actualizehttps://canceradvocacy.org/wp-content/uploads/2020/06/NCCA-Logo.pngactualize2015-11-22 15:49:192015-11-22 15:49:19Dr. Julia Rowland Discusses the Importance of Psychosocial Care: Engagement and Dialogue
“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
