NCCN Policy Summit Speakers Say Flexibility in Supporting and Accommodating Cancer Patients and Caregivers Helps Workplaces Thrive

On June 17, 2022, NCCN convened an oncology policy summit in Washington, DC, on the topic of building a workplace that includes support for people with cancer and their caregivers. The program, which also featured a virtual attendance option, examined how workplace norms and expectations have changed in recent years, particularly since the onset of the COVID-19 pandemic. The conversation also examined the current legal and policy landscape, in addition to how generational shifts and an increasing number of cancer survivors in the workforce are leading to cultural changes throughout the United States.

“We need a cooperative and flexible approach from employers, payers, providers, and healthcare systems to ensure high-quality and equitable care for all our patients and their caregivers—meeting their needs with minimal disruption to their work and their income,” said John Sweetenham, MD, FRCP, Chair, NCCN Board of Directors, and Professor of Medicine, Associate Director of Clinical Affairs, UT Southwestern Simmons Comprehensive Cancer Center. “The pandemic has resulted in the transformation of virtual cancer care and a renewed interest in interventions such as home infusion of cancer therapy. As home becomes the workplace for so many more people since COVID, we need employment and leave benefits as well as regulatory policies that allow us to support patients in their homes.”

Panelist Rebecca V. Nellis, MPP, Executive Director, Cancer and Careers, shared results from a 2021 Cancer and Careers/Harris Poll Survey. It found that 74% of employed patients and survivors reported that working during treatment helps or helped them cope, and 75% of surveyed patients and survivors said that work helps or helped in their treatment and recovery.

“There are a lot of misconceptions about working after a cancer diagnosis,” explained Nellis. “Employers may think people don’t want to work or can’t work, or that providing accommodations is expensive, and that accommodating one person means making changes for every employee. The truth is that working after a cancer diagnosis is more than possible. Access to guidance and supportive workplace policies make it easier. But it is also a very individual decision with many factors to consider, including treatment plan, personal needs and preferences, disclosure and privacy considerations, type of work, company and team culture, etc.”

“It’s a win-win when employers do the right thing by patients and their families, especially those facing cancer,” said Debbie Weir, Chief Executive Officer, Cancer Support Community. “It is important for employers to keep the needs of their employees at the center when making benefit decisions. Limiting or constraining access to timely, quality care to reduce coverage costs is good for neither the patient nor the company.”

Keynote speaker Lynn Zonakis, BA, BSN, Principal, Zonakis Consulting, and former Managing Director of Health Strategy and Resources for Delta Air Lines, also touched on how fostering a supportive atmosphere confers benefits to the employer. “Managing cancer and providing services that assist employees and dependents with illness, associated time off from work, return to work, emotional health, survivorship, and end-of-life is not only the right thing to do, but ultimately lowers cost,” said Zonakis.

“Company leaders at every level should be empowered to support their workforce,” agreed Angela Mysliwiec, MD, Senior Medical Director, WellMed.

Informing Employers and Employees

Speakers explored some of the knowledge gaps and misunderstandings that can result in poor experiences for everyone. Employers don’t always know what kind of support their employees need, and employees are often unaware of all the resources that are available to them.

“Employers and payers may find themselves unsure of how to address their employees’ difficult questions, or not know what they can do to point them toward trusted resources that support informed and wise decision-making, said Warren Smedley, DSc (candidate), MSHA, MSHQS, Vice President, The Kinetix Group. “NCCN has worked hard to develop the NCCN Employer Toolkit, which is a trusted source of information to help prioritize the strategies and tactics that support the highest quality of care, along with the most responsible use of resources for employers that are potentially impacted by cancer diagnoses in their worker(s).”

“It is so important for individuals diagnosed with cancer and their caregivers to understand all of their employment rights and available benefits so that they can make educated decisions about their best path forward,” said Joanna Fawzy Morales, Esq., Chief Executive Officer, Triage Cancer, who provided another keynote address on the policy landscape to support patients, survivors, and caregivers at work. “Although federal and state employment protections exist, there is a significant lack of awareness of those protections. There are also gaps in the law that patients and caregivers may fall through. There are many opportunities to close those gaps to improve the quality of life of patients and their families and mitigate the financial toxicity of a cancer diagnosis.”

Equitable Care

Many speakers focused on health equity issues and how they can relate to workplace practices.

“Exploring opportunities for the workplace to be more inclusive and accessible to all cancer patients, survivors, and caregivers will help build trusting relationships, informed care, and sensitivity to health equity/literacy,” said Randy Jones, PhD, RN, Professor of Nursing and Associate Dean for Partner Development and Engagement, University of Virginia School of Nursing. “There is a need for clinicians to provide simple, nonjudgmental information, with little or no medical jargon during patient interactions, so patients and caregivers can understand what is happening with their own or their loved one’s healthcare. Enhancing racial and ethnic diversity in the oncology workforce is important for increasing the equity in care that cancer patients receive, along with potentially enhancing the patient-and-provider relationship.”

Panel member Fran Castellow, MSEd, President, Operations, Patient Advocate Foundation, was part of a conversation surrounding benefit design and the role of policymakers. Speakers also referenced data that show increased productivity (and ultimately retention) when employees have access to quality care, screening, and treatment in a timely manner.

The summit featured Clifford Goodman, PhD, The Lewin Group, as moderator. NCCN Chief Executive Officer Robert W. Carlson, MD, introduced the program, and NCCN Senior Vice President, Chief Medical Officer Wui-Jin Koh, MD, provided closing thoughts.

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