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NCCN Patient Advocacy Summit Examines Disparities in Cancer Care and Explores Solutions
Advocates, patients, providers, and other experts share perspectives on the challenges that prevent equitable opportunities and outcomes for people with cancer.
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WASHINGTON, D.C. [December 10, 2018] — The National Comprehensive Cancer Network® (NCCN®) hosted a Patient Advocacy Summit in Washington, D.C., today, focused on advocating for equity in cancer care. The summit included case studies, presentations, and panel discussions, all highlighting the barriers that prevent various populations from achieving better outcomes in cancer care. The speakers also discussed some of the work currently underway to help mitigate those issues.
“Cancer care practices are improving every day, but we have to work together to make sure those advancements are accessible to everyone,” said Robert W. Carlson, MD, Chief Executive Officer, NCCN. “People with cancer can be excluded from optimal care for many reasons, including geographic location, socioeconomic class, sexual orientation and identity, insurance status, unconscious bias, and other aspects beyond their control. That’s why NCCN provides opportunities to learn about the causes of these disparities and to share best practices for addressing them.”
The summit included a keynote address from Lynette Bonar, RN, MBA, BSN, FACHE, CEO of the Tuba City Regional Health Care Corporation — the only hospital on Navajo land — along with Brandon Canyon, who was his mother’s primary caregiver before she passed away due to complications associated with her cancer treatment. They talked about the significant cancer burden facing the Navajo Nation, where 85% of homes are contaminated by uranium from abandoned mines. Navajos living near those mines have higher levels of uranium in their bones than 95% of the American population. Those who develop cancer then need to travel more than 100 miles in order to receive treatment.
The burden of traveling for care was a repeated theme throughout the day. For many rural residents, having to travel 50 miles or more for care can be prohibitive. Potential solutions, including treatment online or by phone, often mean relying on infrastructure and technology that may not exist in their area.
“Community oncology practices, already serving the majority of cancer patients in the United States, are developing various processes to further extend access to all populations,” said Natalie Dickson, MD, FACP, Chief Medical Officer, Tennessee Oncology. “We see the path to success. It will require proper funding and leveraging technology for enhanced interdisciplinary teams, policies supporting health and wellness, and solutions to the high cost of drugs.”
“Equity requires a reduction in the variability of care regardless of where the cancer is treated,” said Christine Weldon, MBA, Director, Center for Business Models in Healthcare; Adjunct Instructor, Northwestern University Feinberg School of Medicine. “It’s imperative to follow evidence-based guidelines for treating the patient’s entire set of needs. At the same time, care must be personalized to the patient’s cancer profile, co-morbidities, practical, supportive, emotional and physical needs.”
Some of those needs could include practicalities like childcare, out-of-pocket expenses, missed paychecks, plus the financial toxicity concerns from the treatment itself, according to the panelists.
“Socioeconomic factors play a major role in a patient’s ability to access quality cancer care for pancreatic cancer, including access to resources, clinical trials, and molecular profiling,” explained Cassadie Moravek, Associate Director of Clinical Initiatives, Pancreatic Cancer Action Network (PanCAN). “PanCAN strives to overcome these barriers and support pancreatic cancer patients through our Patient Central call center, where our Patient Central Associates provide personalized information tailored to each patient’s needs and concerns. That includes access to our Know Your Tumor® precision medicine service, which is available to all patients regardless of the medical institution where they receive treatment.”
“The Leukemia & Lymphoma Society (LLS) is the leading source of free blood cancer information, education, and support for patients, survivors, caregivers, and healthcare professionals,” said Laura Ortiz-Ravick, Sr. Program Manager, Outreach and Health Promotion, LLS. “LLS is at the forefront of patient and community-focused initiatives that address barriers to care — including health disparities — and ensure access to cutting-edge, affordable, and coordinated treatment for all blood cancer patients. For example, LLS’s Myeloma Link program works to address the significant health disparities that exist among African Americans with multiple myeloma, a blood cancer for which African Americans are twice as likely to be diagnosed as white Americans.”
The speakers also pointed out that the barriers to equitable care aren’t always economic. Historic events like the Tuskegee syphilis experiment have resulted in some cultural mistrust of medical interventions. Patients with language barriers often face added difficulties when participating in shared decision-making. Some patients face conscious or unconscious biases that can have a big impact on their treatment options.
“People always say that ‘cancer doesn’t discriminate,’ but the healthcare system often does,” said Liz Margolies, LCSW, Executive Director, National LGBT Cancer Network. “For instance, the stress and stigma of living as sexual and gender minorities in this culture contributes to increased cancer risks in lesbian, gay, bisexual and transgender (LGBT) people. Once diagnosed, LGBT people consistently show worse outcomes after treatment, resulting from provider and systemic bias, and lack of training in LGBT culture and health.”
The panelists also highlighted how clinical trials are a particular area of need for increasing access to underserved populations.
“As a patient advocacy organization that strives to create equitable access to clinical trials for all patients, we appreciate the opportunity to bring attention to this very important matter,” said Dana Dornsife, Chairman and Founder, Lazarex Cancer Foundation. “At Lazarex, we believe that everyone should have the opportunity to take advantage of the medical breakthroughs in technology that clinical trial participation can provide.”
Despite the many difficulties that exist in the delivery of equitable cancer care, the advocates remained optimistic about the future.
“I’m proud to participate in this event and join this important conversation about health equity,” said Michael Sapienza, Chief Executive Officer, Colorectal Cancer Alliance. “The Colorectal Cancer Alliance continues our commitment to breaking down barriers, empowering all people living with cancer, and ultimately ending cancer as we know it.”
Billy Foster of the Kidney Cancer Association (KCA), who has been living with metastatic kidney cancer for more than twenty years, summed up the summit:
“Everyone deserves equal access to good healthcare. I’m here to bring some understanding to why this isn’t currently the case, and to help find solutions to these inequities. I believe that with the efforts of us all, we can provide the underserved with accessible, quality healthcare.”
The panel discussions were moderated by Clifford Goodman, PhD, of The Lewin Group. Additional speakers included:
- Justine Almada, The HPV and Anal Cancer Foundation
- LeeAnn Bailey, MBBS, PhD, National Cancer Institute- Center to Reduce Cancer Health Disparities
- Shonta Chambers, MSW, Patient Advocate Foundation
- Lauren Corduck, MNO, Oneinforty
- Donna Cryer, JD, Global Liver Institute
- Elizabeth Franklin, LGSW, ACSW, Cancer Support Community
- Marc Futterweit, JD, Male Breast Cancer Coalition
- Marcie Reeder, MPH, NCCN Foundation
- Julia Trosman, PhD, MBA, Center for Business Models in Healthcare, University of California, San Francisco
- Gloria Zhang, New Tang Dynasty Television
For more information and a look at upcoming NCCN Policy Summits, visit NCCN.org/policy.
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About the National Comprehensive Cancer Network
The National Comprehensive Cancer Network® (NCCN®) is a not-for-profit alliance of 28 leading cancer centers devoted to patient care, research, and education. NCCN is dedicated to improving and facilitating quality, effective, efficient, and accessible cancer care so patients can live better lives. Through the leadership and expertise of clinical professionals at NCCN Member Institutions, NCCN develops resources that present valuable information to the numerous stakeholders in the health care delivery system. By defining and advancing high-quality cancer care, NCCN promotes the importance of continuous quality improvement and recognizes the significance of creating clinical practice guidelines appropriate for use by patients, clinicians, and other health care decision-makers around the world.
The NCCN Member Institutions are: Abramson Cancer Center at the University of Pennsylvania, Philadelphia, PA; Fred & Pamela Buffett Cancer Center, Omaha, NE; Case Comprehensive Cancer Center/University Hospitals Seidman Cancer Center and Cleveland Clinic Taussig Cancer Institute, Cleveland, OH; City of Hope National Medical Center, Duarte, CA; Dana-Farber/Brigham and Women’s Cancer Center | Massachusetts General Hospital Cancer Center, Boston, MA; Duke Cancer Institute, Durham, NC; Fox Chase Cancer Center, Philadelphia, PA; Huntsman Cancer Institute at the University of Utah, Salt Lake City, UT; Fred Hutchinson Cancer Research Center/Seattle Cancer Care Alliance, Seattle, WA; The Sidney Kimmel Comprehensive Cancer Center at Johns Hopkins, Baltimore, MD; Robert H. Lurie Comprehensive Cancer Center of Northwestern University, Chicago, IL; Mayo Clinic Cancer Center, Phoenix/Scottsdale, AZ, Jacksonville, FL, and Rochester, MN; Memorial Sloan Kettering Cancer Center, New York, NY; Moffitt Cancer Center, Tampa, FL; The Ohio State University Comprehensive Cancer Center - James Cancer Hospital and Solove Research Institute, Columbus, OH; Roswell Park Comprehensive Cancer Center, Buffalo, NY; Siteman Cancer Center at Barnes-Jewish Hospital and Washington University School of Medicine, St. Louis, MO; St. Jude Children’s Research Hospital/The University of Tennessee Health Science Center, Memphis, TN; Stanford Cancer Institute, Stanford, CA; University of Alabama at Birmingham Comprehensive Cancer Center, Birmingham, AL; UC San Diego Moores Cancer Center, La Jolla, CA; UCSF Helen Diller Family Comprehensive Cancer Center, San Francisco, CA; University of Colorado Cancer Center, Aurora, CO; University of Michigan Rogel Cancer Center, Ann Arbor, MI; The University of Texas MD Anderson Cancer Center, Houston, TX; University of Wisconsin Carbone Cancer Center, Madison, WI; Vanderbilt-Ingram Cancer Center, Nashville, TN; and Yale Cancer Center/Smilow Cancer Hospital, New Haven, CT.
Clinicians, visit NCCN.org. Patients and caregivers, visit NCCN.org/patients. Media, visit NCCN.org/news. Follow NCCN on Twitter @NCCNnews and Facebook @National.Comprehensive.Cancer.Network