The National Comprehensive Cancer Network (NCCN) focused its annual patient advocacy summit, held virtually this year, on meeting the needs and preferences of cancer patients of all ages and walks of life-with an emphasis on how those needs and preferences can change across the lifespan.
Sen. Chris Van Hollen (D-MD) and Rep. Buddy Carter (R-GA) emphasized that when it comes to advocacy, cancer is a bipartisan bridge issue in Congress which does not depend on party affiliation.
"This is something that brings Americans together as fellow human beings," said Carter, a pharmacist by training.
Progress in Pediatric Cancers
Bipartisan cooperation is especially evident in pediatric cancers, said both members of Congress. Carter cited passage of the STAR (Childhood Cancer Survivorship, Treatment, Access and Research) Act of 2018, the most extensive pediatric cancer bill ever signed into law, as a bipartisan milestone in improving treatment of pediatric cancer patients.
STAR authorizes the National Institutes of Health (NIH) to provide funding for registries for pediatric, adolescent, and young adult cancers that have the least effective treatments in order to improve care.
"We are always looking for legislation that benefits children," said Carter, adding that he has been sensitized to the needs in pediatric oncology by the toll he has seen cancer take on children and their caregivers.
Van Hollen agreed, and cited another milestone-passage of the RACE (Research to Accelerate Cures and Equity) for Children Act of 2017. This legislation calls for pharmaceutical companies to conduct clinical trials to improve treatment of pediatric cancers when a molecular target is relevant to a childhood cancer.
Van Hollen said that he became sensitized to the needs in pediatric cancer by mothers and fathers whose children had died of cancer or whose children were fighting cancer.
"It was those moms and dads who told their stories who inspired me," Van Hollen said. It was parents who raised his awareness of the need for dedicated funding streams for childhood cancers. He noted that, thanks in part to the RACE act, there is much more research now on pediatric cancers.
Individual Patient Needs
Both Van Hollen and Carter stressed the need to take action in Congress to close the gap of health disparities made glaringly apparent by the COVID-19 pandemic. They said that grassroots groups and coalitions, as well as personal stories, are very important in cancer advocacy.
In a keynote talk, patient advocate Jan S. White, a survivor of aggressive stage IV non-Hodgkin lymphoma which had spread to her spine, emphasized that each patient is a unique individual whose values and goals should be taken into account-no matter how dire the diagnosis. She described her fear as she and her husband confronted her diagnosis. "Our heads were spinning," she said, citing the "naked terror" of what she described as her "cancer adventure." But once she had faced her situation and begun treatment, White, an active martial arts expert, realized that her expectations and those of her cancer team did not match.
"I was a surprise to my doctors," said White, adding, "People rise to expectations, but settle for limitations." She implored oncologists not to be guided by limiting age-appropriate norms but rather to see each cancer patient as an individual who deserves personalized care based on his or her own goals and abilities.
"Cancer survivors are more than their age, gender, or disease," said White. "Assumptions around age and gender often figure into care teams' expectations for survivorship, but if you have not asked your patients about their goals for how they want to live following treatment, you are missing an important step. Their answers will surprise you."
White advised oncologists to ask their patients, "What are your goals for how you want to live after treatment?" She recommended having this conversation about halfway through treatment. Asked what a survivorship clinic should look like, White recommended that it be multidisciplinary with specialists in different disciplines (including mental health) who communicate with each other about each patient's unique needs.
Danielle S. Pardue, JD, a caregiver for both of her parents with cancer, agreed with White on the need for individualized cancer care that does not make assumptions, taking into account the patient's goals. She noted that her mother was always the first one on the dance floor, but her mother's care team did not understand that a woman in her mid-70s would want to be the first one on the dance floor.
Pardue emphasized the need for the cancer care team to include cancer caregivers in developing a patient's treatment plan.
"No plan of care for any patient can be completely successful without the support of one or more caregivers, especially at home," she said. "Providers need to take both the patient's preferences and the caregiver's abilities into account when determining their treatment recommendations."
Older cancer patients need more focused attention that includes the social determinants of health, said speakers.
"Cancer is a disease of aging, yet older patients have not shared in the benefits of many modern cancer treatments, and remain woefully underrepresented in clinical trials," said Hyman Muss, MD, FASCO, the Mary Jones Hudson Distinguished Professor of Geriatric Oncology and Director of Geriatric Oncology at the University of North Carolina Lineberger Comprehensive Cancer Center. "It is the obligation of all of us to fix this in order to guarantee that our older cancer patients get the care they need."
Muss recommended that each older cancer patient receive a comprehensive geriatric assessment, which includes information on caregivers and social and emotional support. But he noted that in a busy clinical practice it is hard to make time for this kind of geriatric assessment. "The problem for physicians, nurses and APPs [advanced practice providers] is time," he noted.
Agreeing on the need for geriatric assessment of older cancer patients was Efrat Dotan, MD, Associate Professor in the Department of Hematology/Oncology at Fox Chase Cancer Center, and Chair of the NCCN Guidelines Panel for Older Adult Oncology. "It all starts with just communicating with a patient" to determine his or her fears, goals and wishes, she said. "As we refine our understanding of tumor biology and tailor therapy to the molecular subtype of each tumor, we must remember factors outside of the actual treatment that significantly affect outcomes," added Dotan, who like Muss considers older cancer patients a vulnerable population.
"Especially when treating older adults with cancer, evaluating all the domains that affect their care-and addressing any deficiencies-will result in truly personalized medicine and improved outcomes." Dotan said more data are needed on the side effects of cancer treatments in older patients.
Muss and Dotan agreed on the need to ask cancer patients about their values and goals. Muss said he starts a visit with a new patient by saying, "Tell me about yourself," and he teaches his residents to do so. Dotan said she asks patients, "What do you want?" More often than not, she said, a patient will say to her, "You're the first person who asked me that." Muss added that often a patient's family may want more done for the patient than the patient does, so it is important to find out the patient's wishes.
The Role of Survivorship
Cancer patients' needs and wishes are also important as they leave active treatment and transition to survivorship care, said speakers. Cancer survivors have to know that they will continue to need care, even decades out from treatment, stressed Aarati Didwania, MD, MSCI, Professor of Medicine and Medical Education at the Robert H. Lurie Comprehensive Cancer Center of Northwestern University.
"Effective transition of care in cancer survivors from oncologists to primary care physicians can make a difference in early detection of late effects," said Didwania. "You can't find something that you are not looking for."
Maura Dickler, MD, Vice President of Late Phase Development at Lilly Oncology, stressed the need for clinical trials that enroll a broad representation of patients across age, race and ethnicity.
"At Lilly, we are committed to reducing the barriers that limit diversity in clinical trial enrollment, including working to ensure our trial sites are closer to patients, utilizing new forms of telehealth when appropriate, and broadening eligibility criteria so we are not excluding patients who have additional health conditions," she said.
Darcie Green, Executive Director of Latinas Contra Cancer, emphasized that the adult cancer journey cannot be separated from social, racial and economic inequality-which must be addressed in treatment. "The COVID-19 pandemic has only deepened health injustice and the trauma of poverty in this country. This impact is reflected in the experience of cancer patients in the population we serve," she noted.
Other speakers who stressed the importance of social determinants of health and the need for social support in individualized cancer care include Alyssa Schatz, MSW, NCCN's Senior Director of Policy and Advocacy; Phylicia L. Woods, JD, MSW, from the Cancer Support Community; Andrea Conners, MS, from the Patient Empowerment Network; Molly McDonnell, from Fight Colorectal Cancer; Sarah Miretti Cassidy, from the Cancer Hope Network; and Dottie Shead, MS, from NCCN's patient information department.
Schatz said that NCCN works with patient advocacy organizations all year to make sure NCCN's policy team is aligned with the issues most important to cancer patients and their caregivers. Shead discussed existing NCCN Guidelines for Patients across cancer types and supportive care topics, including symptom management and age-related care for adolescents and young adults. Shead also previewed the soon-to-publish patient and caregiver guidelines focused specifically on post-treatment survivorship.
Peggy Eastman is a contributing writer.