Supporting Employees with Cancer
As the survivor ranks grow, more companies are taking steps to end the stigma around employees with the disease.
Bill Sullivan was laid off from his job as a software marketer at a tech startup in 2019 shortly after he returned from the second leave he took for treatment of ocular melanoma, a rare type of eye cancer. In 2021, he lost his job at a tech company about six months after asking for a new position at the suggestion of his oncologist who said he was compromising his health by performing a function that required simultaneously monitoring multiple computer screens all day. The New Hampshire resident says that when he indicated on job applications that he had a disability, the rejections came almost immediately. He stopped volunteering the information a few months ago.
“I think my cancer played a role [in my dismissals] for sure,” says Sullivan, a 48-year-old who asked that his name be changed. “In general, a diagnosis makes you more vulnerable, more susceptible to layoffs. Companies don’t want the liability if you have to go on long-term disability.”
Many employees share Sullivan’s fear of disclosing their cancer diagnosis at work. A survey by the French nonprofit Cancer@Work found that 50 percent of employees are afraid to reveal that they have the disease. Fear of losing their job, and with it their employer-provided health care, is the major reason people don’t acknowledge their cancer in the workplace, experts say. Workers at small companies are especially nervous, because they say reporting their illness will make it easy for executives to pinpoint who is driving up health care costs. Other reasons for silence include the desire not to become a burden on teammates and concerns over being pushed off the career fast-track.
The Americans with Disabilities Act makes it illegal to fire someone with cancer because of their condition, and many employees can take up to 12 weeks of leave under the Family and Medical Leave Act. But the leave is unpaid, and many people can’t afford to go without an income. Most companies offer short- and long-term disability insurance, though the policies don’t cover a worker’s full salary and do not protect the person’s job.
“In one respect, I think I should check off the disability box,” Sullivan says. “I feel like I should advocate for myself and advocate for people with hidden disabilities. At the same time, I feel like I’m saying I’m damaged goods.”
Employers say they want workers to apprise them of their cancer diagnoses so they can adapt the employees’ schedules and responsibilities to accommodate treatment, as well as help them navigate the often-confusing health care system to get the best medical services available. Finding quality care early can improve outcomes and save money. Research shows that most employers are trying to create a more supportive environment by training managers to become more sensitive, expanding benefits and starting support groups. And allowing employees to work through their treatment has been shown as a benefit to both employers and those who are fighting cancer.
Survival Rates Increase
Making employees comfortable with disclosing their condition will be more important going forward, as more people are living with cancer. There were 18.1 million cancer survivors—5.4 percent of the population—in the U.S. in 2022. That figure is expected to rise 24 percent, to 22.5 million, by 2032, according to National Cancer Institute’s Division of Cancer Control and Population Sciences. Half of men and a third of women are at risk of developing the disease, according to the American Cancer Society. Cancer has been employers’ biggest health care expense for the last two years, based on data from the Business Group on Health, an association of large employers.
Plus, many employees want to work through their treatments. Two-thirds (67 percent) of people with cancer said that working helped their recovery, according to the nonprofit Cancer and Careers. Around three-quarters of adults who worked during their treatments said doing so helped them cope with the disease.
projected cancer survivors by 2032, an increase of 24.4% over 10 years.
Source: National Cancer Institute, 2022.
53% of cancer survivors looking for a job believe prospective employers would treat them differently if they knew about their diagnosis.
Source: Cancer and Careers, 2022.
“I’m single and I’m my sole income provider, and I needed the health insurance,” says Renee Hill, who was diagnosed with stage 4 appendix cancer in 2016 and has undergone treatment while working for two different employers. “It was absolutely not an option for me to not work. I do think that having to work helped me, because it gave me something else to think about.”
The push to get employees to discuss their cancer got a major boost last year when the charitable arm of Paris-based advertising and public relations giant Publicis Groupe launched an effort to end the disease’s stigma in the workplace. The Working with Cancer Pledge urges employers to create a supportive environment for those with the disease and for workers who are caregivers for those with the condition. Launched at the World Economic Forum in Davos, Switzerland, in 2022; bolstered with ads during the Super Bowl last year; and backed by a $100 million ad budget, the initiative prompted roughly 1,200 organizations to take the pledge. A new phase of the program was slated to be announced this spring.
Publicis chairman and CEO Arthur Sadoun spearheaded the pledge after he was diagnosed with throat cancer in 2021. He said in interviews that he decided to address the issue because he heard from so many people who hid their diagnoses from their employers and thanked him for openly discussing his journey.
“There’s really a lot of fear in that moment of diagnosis,” says Gina Jacobson, program director of the Working with Cancer Pledge and a colon cancer survivor. “The first question that somebody asks after, ‘Will I or won’t I live?’ is, ‘Can I still work?’ How do we make sure that at that moment of diagnosis, people know that they can expect to have a positive, supportive, recovery-focused workplace?”
One strategy Publicis adopted is to guarantee that any of its employees who are diagnosed with cancer will have a job for at least a year.
Support Systems
But new programs and policies aren’t enough, according to Rebecca Nellis, executive director of Cancer and Careers. “You can’t just start building trust with your employees in the acute moments,” Nellis says. “I think most everyone runs their business with the best intentions and the hope that their employees feel loyal and supported and proud of the work that they’re doing. But if you aren’t actively building trust and thinking about how to create a trusting environment through all of the touchpoints that person has, the feeling isn’t going to flow through.”
Cancer and Careers’ research found that only 43 percent of workers with cancer tell someone in the HR department about their condition—a statistic Nellis finds especially troubling. That’s because HR professionals would generally be better equipped than managers to educate employees about the benefits and resources available to them. Nellis thinks workers’ reticence reflects their belief that HR is looking out for the company and not employees. She adds that others may not think of HR because often they only hear from the department during open enrollment.
Nellis suggests that HR departments consider publicizing all types of benefits through sending out newsletters, hosting lunch-and-learns, and/or setting aside time when employees can ask general questions. “Use these as a way to be in touch when it isn’t open enrollment and there isn’t something bad happening,” Nellis says.
Walmart Inc. signed the pledge, though it hasn’t added new cancer-specific benefits to its offerings. Kim Lupo, the retailer’s head of global rewards, says the company has long highlighted the stories of cancer patients in various newsletters and town hall meetings to discuss Walmart’s benefits and show how it supports its employees. Some executives discuss their cancer on their LinkedIn pages, Lupo adds.
“We try to be intentional,” she says. Walmart offers employees on most of its medical plans a concierge service to help them navigate the health care system. The service provides access to high-quality treatments, makes doctor’s appointments and even reserves hotel rooms for those traveling to receive care. Earlier last year, the retailer trained leaders on how to address the needs of employees who may be having mental health challenges—a big focus for the company. Lupo says the lessons on how to discuss sensitive matters and direct people to benefits will help cancer patients, too.
Pfizer Inc. employees can learn what it’s like to work at the company while undergoing cancer treatment by speaking with their colleagues through a program started by two employees in 2012. That’s when two breast cancer survivors launched the Butterfly Club, which matches cancer patients with in-house mentors who have had the disease, so they can talk to someone with similar experiences. The program was initially only for breast cancer patients, but in 2021 it was expanded to other forms of cancer, and the plan is to broaden it to include other chronic conditions.
Mentors complete a small amount of online training, but they’re told not to offer any medical advice.
“It’s really just about having a friend in your time of need who has been there,” says Katrina M. Johnson, a U.S. director of advocacy and professional relations at Pfizer and a five-time cancer survivor. “It really gives us hope when we know we have a fellow colleague who has been in the same situation. It gives us community.”
The FMLA Option
Dr. Stacy Wentworth, medical director of cancer survivorship and a radiation oncologist at Atrium Health Wake Forest Baptist, a medical center in Winston-Salem, N.C., says most of her patients have had good experiences when they tell their employers about their diagnosis. Those with problems tend to work at smaller companies and nonunionized factories. She says that recently a patient who had finished treatment and went back to work at a manufacturing plant was let go because she still wasn’t strong enough to perform the physically demanding job. Wentworth advises all her patients to apply for FMLA, which allows workers to take leave in small increments, so they have job protection.
“People are so reluctant and resistant to [take FMLA], and I guess it’s because of our bootstrap, hard-working culture that they want to work through treatment,” Wentworth says. “I have not had any cancer patient who does not want to try to work during treatments [for both financial and mental health reasons].”
She adds that patients tell her they don’t need to apply for FMLA because they have understanding managers who have pledged to help them work through treatment. Still, supervisors may not understand all that’s involved in treatment and how draining it can be.
“Managers’ patience can wear thin if you’re taking a lot of time off and aren’t as productive as you were in the past,” Wentworth says.
An understanding boss and team are crucial for those who are working while they have cancer, according to patients and experts. “The people that have the biggest positive or negative impact on our well-being and our health are our direct teammates and our direct leader,” says Jen Fisher, human sustainability leader at Deloitte. She notes that this is true even when people aren’t sick.
Fisher was Deloitte’s chief wellness officer when she was diagnosed with breast cancer eight years ago, and she worried that her disease would disqualify her from serving in that role. “My leader said, ‘Jen, that’s the dumbest thing I’ve ever heard you say,’ ” she recalls, “but in my mind, I thought, ‘How can you have somebody with cancer telling everybody to take care of themselves?’ ”
Fisher chose to work through her treatments, though she modified her schedule. She stopped traveling for work and took time off when she needed it. She also blocked out time to nap during the day because her treatments left her fatigued.
“I told people what I wanted and what I needed,” Fisher says. “I think most people are relieved when you tell them what you want and need because they want to help but don’t know what to do.”
Working Through Treatment
Hill says she was scared to tell her manager that her cancer had returned in January 2020 because it was her first day at her new job as a program coordinator in the Office of Research and Innovation at Marquette University in Milwaukee.
“I had to walk in and say I need every other Friday off because I need to have chemo again—they were incredibly understanding,” says Hill, who is now a program manager at the Translational Glycomics Center at Versiti’s Blood Research Institute in Milwaukee.
Her then-boss let her work at home because of her weakened immune system, she says, though after COVID-19 hit, that became the norm. She says she explained to her boss that she knew how to balance working with treatment because she had done it before. However, Hill says it was difficult starting a new job knowing that she wasn’t able to perform at her best. “They never knew full-strength Renee,” she says.
Bill Sullivan says he doesn’t think his work suffered because of his condition. “I was super productive,” he says. The company gave him a three-month trial in the marketing department, and after that period ended assigned him a permanent role. Three months later, that position was eliminated. Sullivan says the job was presented as an opportunity, but he suspects it was just a step toward getting rid of him.
Heidi Gray says she relates to people who don’t want to tell their employers about their disease. She was diagnosed with ovarian cancer when she was 22 and never told anyone in her company for fear of losing her job. It was more than 30 years ago, but she still remembers how she had to sleep with her wig on during a business trip because she was sharing a room with colleagues. “It was awful, awful, awful,” recalls Gray, who is chief people officer at Kargo, a mobile advertising company.
Kargo signed the Working with Cancer Pledge, and though Gray says the company hasn’t publicly committed to guaranteeing cancer patients a job for a year as Publicis has done, it is operating under that premise.
Last year, a Kargo employee who was working under a performance improvement plan announced he had brain cancer. Gray says he was told not to worry about his job, and he was moved to a less stressful position for the time being. She adds that she understands that people could view that as a demotion or a step toward being let go.
“I look at careers as chapters, and for this chapter, this role is the best fit for [him] personally, as well as the company,” Gray says. “Nothing is forever.”
Cancer Caregivers Also Need Support
A diagnosis of cancer or another serious, chronic condition doesn’t just affect the patient. It can take an enormous physical, emotional and financial toll on their caregivers, too.
There were roughly 53 million caregivers in the U.S. in 2020, and 61 percent of them were employed, according to a survey by AARP and the National Alliance for Caregiving. At least a third of the employed individuals haven’t told their employers about their caregiving responsibilities. Like individuals with serious conditions, some caregivers fear that disclosing their status will put them at risk of being fired or discriminated against, experts say.
Employers are feeling the impact. Caregiving costs the economy $264 billion annually, due to factors including employee absenteeism and lost productivity, according to a 2021 report by the Blue Cross Blue Shield Association, a trade group representing 33 independent health insurers.
“Not enough companies are really working to engage their employees to understand what their caregiving responsibilities are,” says Jason Resendez, president and chief executive officer of the National Alliance for Caregiving, a Washington, D.C.-based advocacy organization. “I think there needs to be this concerted effort to engage employees around caregiver conversations.”
Caregivers in many companies are entitled to up to 12 weeks of leave under the Family and Medical Leave Act, though the leave is unpaid. The number of companies offering paid family leave has increased to nearly 40 percent, up from 32 percent in 2015, according to Resendez, adding that the jump is due to state mandates. He says that 90 percent of the companies that offer paid leave are in states where it’s required by law.
Nine states, plus Washington, D.C., have laws mandating paid leave, according to New America, a Washington, D.C.-based think tank. Four more states will implement such laws by 2026.
The programs vary by state, and currently no state requires employers to pay a worker’s full salary when they take leave to serve as a caregiver.
“The gaps and fragmentation underscore the need for national, federal action,” Resendez says. He adds that it’s particularly important because women, especially women of color, are often tasked with caregiving responsibilities, and many are forced to leave their jobs or reduce their hours, depriving them of their salaries and health insurance. —T.A.
Theresa Agovino is the workplace editor for SHRM.