Published on October 1, 2020
Chadwick Boseman’s Death Reveals Struggle With Cancer Disclosure
Actor Chadwick Boseman’s death really hit home for Dr. Mark Lewis — professionally and personally.
The “Black Panther” and “42” star died on August 28 at the age of 43 after a four-year battle with colon cancer. Boseman had not spoken publicly about his diagnosis. In fact, several of his movies were filmed during and between countless surgeries and chemotherapy.
Boseman’s mother, Carolyn Boseman, "always taught him not to have people fuss over him," his agent, Michael Greene, told the Hollywood Reporter. "He also felt in this business that people trip out about things, and he was a very, very private person."
A New Job and a Cancer Diagnosis
Dr. Lewis, a hematologist-oncologist in Murray, Utah, was diagnosed with a hereditary tumor syndrome, specifically multiple endocrine neoplasia type 1 (MEN 1), more than 10 years ago when he was 30. The diagnosis was made on his first day as an oncology fellow at the Mayo Clinic in Rochester, Minnesota.
MEN 1 is a lifelong predisposition to tumors in the endocrine organs, specifically the pituitary gland, the parathyroid glands and the pancreas. Dr. Lewis has had parathyroid and pancreas tumors.
“I was extremely fortunate,” he said in a recent Patient Power webinar about cancer patient rights at work. “I was basically in a setting where people could not have been more understanding about the implications of cancer. And so, naturally, I was leaning on my colleagues for multiple forms of guidance both counsel as a patient and then their advice about whether I should continue my training.”
He added: “And that really has again been the prism through which I see my entire career and I've been very fortunate, even after my training. I've had employers, since then, and they could not have been more understanding… On the patient side, I think it gives me some hard-won empathy.”
Cancer Discrimination in the Workplace
Like Boseman, many cancer patients are reticent to share their diagnosis. Cancer discrimination in the workplace can take many forms, such as being demoted or fired without a clear reason, being overlooked for an earned promotion, or finding a lack of flexibility when requesting time off for medical appointments.
Jill Silverstein, an employment attorney in St. Louis who also participated in the webinar, said patients are under no obligation to disclose their diagnosis to their employer.
The federal Health Insurance Portability and Accountability Act (HIPAA) Privacy Rule established national standards in the United States to protect individuals' medical records and other personal health information, and almost all states have laws regarding physician-patient confidentiality.
However, if you need to take extended leave, it might be a good idea to tell your employer about your diagnosis so they can find someone to cover for you, Silverstein said.
Still, that doesn’t mean you have to divulge all the details, she explained, adding that cancer patients should be cautious about what they disclose.
The same rule applies to patients who need additional information from human resources about benefits, such as long- or short-term disability, the Family Medical Leave Act (FMLA) and life insurance. FMLA allows an employee to take up to 12 weeks of unpaid leave for certain medical and family reasons. The leave can be intermittent or continuous.
Dr. Lewis said predicting how much time a patient may need off from work for treatment requires some educated guessing. But he said FMLA or disability leave paperwork does provide some latitude if there are treatment complications.
He encourages patients to ask their healthcare provider, "what can I expect?"
“Usually I'm cycling someone every two weeks,” he said. “Yes, the first few days of treatment they may be unable to work, but then typically that second week is a period of recovery when they should be able to do their jobs and it may even be safe for them to go in the workplace.”
Americans with Disabilities Act
Silverstein added that cancer patients are protected against job discrimination under the Americans with Disabilities Act (ADA) so long as they can perform a job's essential functions. The ADA also requires employers to provide reasonable accommodations (i.e., more frequent breaks, sitting instead of standing, working from home) for qualified employees unless doing so would pose an undue hardship.
“It's important for everybody to know what your job is, and what your essential functions are,” she said. “Can you perform your job if you're working at home, or does your job require you to work in an office environment where you collaborate with other people? And even then, you still may be able to work at home, as we've learned from COVID.”
“This is a very interactive process with your employer, and you need to discuss what can you do, what can't you do,” she added. “Maybe you need to tell your employer, ‘Hey, I need to stay home because I have to take a lot of breaks or I have to use the restroom a lot and it’s too far away from my desk.”
Employees with Cancer Don’t Have to Disclose a Diagnosis
Dr. Lewis said the good news is that cancer treatment is more tolerable than in years past. He pointed out that not every chemotherapy causes hair loss or other visible side effects.
“Oncology has shifted largely from something that happens in the hospital to something that happens in the outpatient clinic,” Dr. Lewis said. “There are some treatments, where it's going to be very difficult, if not impossible, to hide from your employer that you're going through something. On the other hand, a lot of cancer treatment these days is done, not just outpatient, but orally.”
“I would not rush into self-disclosure,” he added. “There is a period of time where you can really be a little bit more thoughtful. Remember you have to opt into disclosure. Your confidentiality is a fundamental right.”
Cancer in the workplace is an important topic, one that we’ll continue to cover. If you would like to share your story, please email firstname.lastname@example.org. We may feature you in an upcoming article or program.
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