As more cancer patients and survivors want to retain their places in the workforce, challenges for employers and new flexibilities caused by the COVID-19 pandemic are mounting. To explore these challenges and new opportunities, the National Comprehensive Cancer Network (NCCN) convened a policy summit at the National Press Club in Washington, DC—Cancer Care in the Workplace: Building a 21st Century Workplace for Cancer Patients, Survivors, and Caretakers.
In his welcoming remarks, NCCN CEO Robert W. Carlson, MD, noted that as cancer treatments evolve, they are giving more patients the option of returning to work. He said that while some places of employment offer high-quality care and benefits, this is not uniform across employers and there are often inequalities among workers who cannot access such benefits. He hopes that after the summit the oncology community will continue a conversation on helping workplaces become more supportive for employed cancer patients.
What is needed is a flexible approach from employers, payers, and health care providers to ensure that cancer patients who work can receive the highest quality care “with minimal disruption to their work and their income,” said John W. Sweetenham, MD, FRCP , FACP, FASCO, Chair of the NCCN Board of Directors and Professor of Medicine and Associate Director for Clinical Affairs at UT Southwestern Simmons Comprehensive Cancer Center. He noted that, as the pandemic has made home the workplace for more people, “we need employment and leave benefits, as well as regulatory policies, that allow us to support patients in their homes.”
Misconceptions about cancer patients and work persist, said Rebecca V. Nellis, MPP, Executive Director of Cancer and Careers. She said that employers may erroneously believe that employees who are diagnosed with cancer don’t want to work. In reality, a 2021 Cancer and Careers/Harris Poll survey found that 74 percent of employed cancer patients and survivors reported that working during treatment is helping or has helped them cope with their illness, and 75 percent of patients and survivors surveyed said work has aided them in their treatment and recovery.
“The truth is that working after a cancer diagnosis is more than possible,” said Nellis, noting that the cancer care team needs to find out what patients’ work priorities are and help them achieve those goals.
Keynote speaker Joanna Fawzy Morales, Esq., CEO of Triage Cancer, agreed with Nellis about misconceptions on cancer in the workforce. She said that health professionals, along with employers, often make wrong assumptions about cancer patients and work. Morales also noted she has heard too many health professionals say to patients, “Just go out on disability.” She said it is vitally important for cancer patients and their caregivers to understand their available employment rights and benefits.
“While federal and state employment protections exist, there is a significant lack of awareness of those protections,” she said. “There are also gaps in the law that patients and caregivers may fall through. There is so much need for education.”
People in lower socioeconomic brackets with low-paying jobs who are diagnosed with cancer may not feel they can negotiate with their employers, said Randy A. Jones, PhD, RN, FAAN, Professor of Nursing and Associate Dean for Partner Development and Engagement at the University of Virginia School of Nursing. He stressed the need to support not only the cancer patients, but also their caregivers. Jones urged clinicians to provide “simple, non-judgmental information, with little or no medical jargon,” so patients and their caregivers can understand their situation and make good decisions. He said opportunities in the workplace need to be more inclusive and accessible to all cancer patients, survivors, and caregivers to help reduce health inequities.
In another keynote address, Lynn Zonakis, BSN, Principal of Zonakis Consulting, noted that, since cancer is a complex disease, it can be confusing for employers. As former Managing Director of Health Strategy and Resources for Delta Airlines, she detailed the use of best practices in fostering a supportive health care insurance program and environment for cancer patients. She described how Delta changed its benefits package to allow for intermittent leave through short-term disability benefits and adopted a 100 percent coverage policy for a second opinion. The company also instituted a maximum for out-of-pocket costs, parity of patient cost-sharing between medical and pharmacy benefits, 100 percent hospice coverage for patients who met certain criteria, and depression screening for cancer patients and their caregivers. These policies, she noted, are not just responsible practices, they also save money.
Agreeing was panelist Angela Mysliwiec, MD, Senior Medical Director at WellMed. She said her philosophy is that “when you do what’s right for the patient,” the money will follow. “At the end of the day, the patients will have better outcomes and you will save money,” she said.
Zonakis noted that Delta adopted a policy of 100 percent coverage for cancer screenings, and built in incentives for employees to get physical examinations and screenings. She said the company promoted these benefits through quarterly newsletters, emails, health fairs, and referrals from the human resources department, increasing the use of preventive services by about 20 percent.
Zonakis stressed that employees need to be encouraged to use their health insurance benefits to the fullest extent. “It really disturbed me when people wouldn’t get a second opinion,” she said, noting that she is well aware that not every company is like Delta, and people with entry-level jobs diagnosed with cancer often are not supported when they return to work or are fired when they get treatment. And some patients work multiple jobs to make ends meet, which complicates their treatment and benefits, if any.
Often employers and payers are unsure of how to help their employees with cancer make good decisions, said Warren Smedley, DSc (candidate), MSHA, MSHHQS, Vice President of the Kinetix Group. He noted that NCCN has developed the NCCN Employer Toolkit, which he helped develop, that aids employers in placing strategies and tactics to aid cancer patients in obtaining the highest quality care, and gives resources that help employers support their employees diagnosed with cancer.
“It is tragic that patients are missing out on getting a second opinion,” said Smedley, agreeing with Zonakis. He, like other speakers, stressed the value of patient navigators. “This is so complex that navigation is really a necessary tool now.”
“We have navigators online,” said Debbie Weir, MSW, CEO of the Cancer Support Community. Weir, a three-time caregiver, noted that in a milieu where people feel “stressed to the max” cancer patients need support to make the best health and work decisions. She advocated for generous health plans with low patient deductibles which foster early detection. “Limiting or constraining access to timely, quality care to reduce coverage costs is neither good for the patient, nor the company,” she said.
Fran Castellow, MSEd, President of Operations for the Patient Advocate Foundation, agreed. The health plan “shouldn’t be a mystery”—either for the patient or the employer. “I don’t think patient preference is considered at all in health plan design,” she noted, adding that cancer survivorship is “severely underrepresented in benefit design” and coverage of health mental services pays off in health plans. “There’s absolutely a return on investment in mental health services,” she stressed.
To improve the workplace for cancer patients, the summit recommended the following:
- Employer health insurance plans with generous benefits, which speakers said pay off by increasing productivity and retention.
- A federal standard for paid sick leave, which will reduce disparities and ease employer compliance.
- Expansion of the Family and Medical Leave Act (FMLA)—which provides unpaid leave—to offer paid medical leave and some benefits for caregivers, for example.
- Closing the waiting periods for Social Security Disability Insurance (SSDI) and Medicare.
- Reasonable accommodations for cancer patients in the workplace, as called for under the Americans with Disabilities Act (ADA). Morales said she thinks “reasonable accommodations” are the most underused part of the ADA. She cited the Job Accommodation Network run by the US Department of Labor, a free, helpful source of assistance to employers and employees about workplace accommodation and disability employment issues.
- Caregiver access to job accommodations, such as flexible schedules.
- Increased investment by employers in health education and health literacy for their employees.
- Having a dialogue to discuss employee benefits between employers and payers.
Peggy Eastman is a contributing writer.