During a virtual annual patient advocacy summit, organized by the National Comprehensive Cancer Network® (NCCN®) and featured Senator Chris Van Hollen (D-MD) and Congressman Buddy Carter (R-GA), key opinion leaders and patient advocated presented ideas on how the needs and wishes of people with cancer vary from group to group and person to person across all ages and need to be addressed as such.

Every year, the NCCN Policy department invites people from across the oncology ecosystem to share their perspectives on improving the quality and efficiency of cancer care so that patients can live better lives. The 2020 virtual summit focused on putting the “personal” into “personalized care” while exploring how the needs of people with cancer can vary across the lifespan.

“We work with patient advocacy organizations year-round to ensure our policy team is advocating for policies that address the most pressing issues for people with cancer and their caregivers,” said Alyssa Schatz, MSW, Senior Director of Policy and Advocacy for NCCN and a participant in the roundtable discussion titled Identifying Policy and Practice Solutions for Patients Across the Lifespan.

“This summit gives us a chance to learn from one another and speak collectively to our audience of providers, payers, and policymakers. A key takeaway from today’s conversation is the reminder to treat the person—not the demographic—while also recognizing that people in some demographics may face additional obstacles to quality cancer care,” Schatz added.

“Cancer survivors are more than their age, gender, or disease,” explained keynote speaker Jan S. White, Cancer Survivor, and Patient Advocate. “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.”

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Recognizing circumstances
“The best way to support a caregiver is to take the time to understand the individual needs and strengths of each caregiver and patient. No plan of care for any patient can be completely successful without the support of one or more caregivers, especially at home. Providers need to take both the patient’s preferences and the caregiver’s abilities into account when determining their treatment recommendations,” echoed Danielle Pardue, a panelist who spoke on behalf of caregivers who recognized the idea of a patient’s unique set of circumstances.

Chris J. Van Hollen, Jr., 115th Congress, serving as the junior Senator from Maryland since January 3, 2017. From 2003 to 2017 he served as the U.S. Representative for Maryland’s 8th congressional district.

“Every problem does not necessarily have a solution; caregivers should be encouraged to share what they need so that solutions can be sought, but shouldn’t be discouraged from sharing when solutions are hard to come by. Sharing experiences is in itself a therapeutic experience for overwhelmed caregivers. There is great power and healing in venting because we understand the world through the stories of others,” Pardue also pointed out.

During the annual patient advocacy summit speakers also looked at how members of various racial, ethnic, or socioeconomic groups can face some common or recurring barriers to care that must be addressed.

“We cannot separate social, racial, and economic inequality from the adult cancer journey,” said Darcie Green, Executive Director of Latinas Contra Cancer.

“The clients we serve face predictable and preventable systemic barriers to cancer care. Navigating cancer can be challenging enough without also having to worry about how you will feed your family, pay rent, absorb income loss, or overcome the obstacles that exist within the healthcare system. 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,” Green added

Age at the time of diagnosis
The speakers also focused particularly on how a person’s age at the time of diagnosis can result in different options or approaches for treatment, for instance, older patients, who are more likely to have additional, unrelated health concerns, or may face implicit bias based on their age.

Earl Leroy “Buddy” Carter, 114th Congress, serving as the U.S. Representative for Georgia’s 1st congressional district since 2015.

“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 affects outcomes,” explained Efrat Dotan, MD, Fox Chase Cancer Center, Chair of the NCCN Guidelines® Panel for Older Adult Oncology.

“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.

“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, 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.”

“We know how important it is to make sure clinical trials enroll a broad representation of patients across age, race, and ethnicity,” agreed Maura Dickler, MD, Lilly Oncology. “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.”

There are also unique concerns for cancer survivors who were first diagnosed during childhood or adolescence. Panelists discussed the confusion that can arise over what happens once patients complete active treatment. That’s where survivorship care plans and clinical practice guidelines on preventing or managing recurrence and side effects can play an important role.

“Effective transition of care in cancer survivors from oncologists to primary care physicians can make a significant difference in early detection of late effects. You can’t find something that you are not looking for,” said Aarati Didwania, MD, MSCI, Robert H. Lurie Comprehensive Cancer Center of Northwestern University.

Current events
Speakers at the summit also touched on current events impacting cancer care including the upcoming Supreme Court ruling on the Affordable Care Act and the long- and short-term impact of the COVID-19 pandemic on cancer care. The virtual discussions were moderated by Clifford Goodman, PhD, The Lewin Group, and also included Phylicia L. Woods, JD, MSW, from the Cancer Support Community.

Representatives from the Cancer Hope Network, Patient Empowerment Network, and Fight Colorectal Cancer presented information about age-specific resources intended to increase access to recommended screening, improve health literacy, and provide peer-to-peer counseling services.

Dottie Shead, MS, from NCCN’s patient information department 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 survivorship, including guidance on post-treatment wellness recommendations, and monitoring and treating the late and long-term effects that can arise from cancer care.

Featured image: Caregiver supporting sick cancer patient. Photo courtesy: © 2016 – 2020 Fotolia/Adobe. Used with permission.

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