Know Your Rights
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By Alanna Kennedy

Know Your Rights

Survivors face work and insurance problems during and after treatment

By Alanna Kennedy


It's no wonder that fears about health coverage and employment are common among cancer patients: According to 2002 estimates, about 3.8 million working-age adults have a history of the disease. Their worries were highlighted last fall in a report published by the Institute of Medicine (IOM), which confirmed that workers diagnosed with cancer face tough challenges, including whether they'll lose their health insurance or job.

Losing health coverage is a very real fear for cancer patients. However, the IOM report suggests that there are often ways to stay insured. Some patients are able to keep employer-sponsored health benefits by continuing to work during treatment—sometimes with special accommodations, such as flexible hours or frequent breaks. In other cases, patients may choose to take advantage of the Family and Medical Leave Act of 1993, which entitles an employee to 12 weeks of unpaid medical leave during any one-year period after 12 months of employment (the company must have at least 50 employees). While on leave, patients retain their employer-sponsored health coverage.

Workers who are let go can sign up to remain on their company's group insurance policy under the Consolidated Omnibus Budget Reconciliation Act of 1986, which is better known by its acronym, COBRA. With COBRA, patients retain medical coverage but pay for it themselves. The expense of COBRA can be a burden, but according to Barbara Ullman Schwerin, the founding director of the Cancer Legal Resource Center, a joint program of the Disability Rights Legal Center (DRLC) and Loyola Law School in Los Angeles, COBRA offers an important benefit: at least 18 months of coverage until the person joins a new group plan.

The Health Insurance Portability and Accountability Act of 1996 (HIPAA) prevents exclusion from a new group insurance plan for a pre-existing condition that occurred in the previous 12 months as long as the person has not had a significant lapse in coverage. "The goal here is maintaining continuous coverage, so that somebody doesn't have a lapse of more than 63 days," says Schwerin, who is also the deputy director of community programs for the DRLC. The IOM report found that many survivors are afraid to switch jobs after treatment because they believe they could be denied health insurance. COBRA can also help survivors ease those concerns, according to Schwerin, who says that many cancer survivors are not aware of the laws that protect them.

Insurance challenges aren't the only ones facing survivors if they decide to re-enter the workplace. The same report found that as many as 20 percent of survivors face work limitations in the two to three years after diagnosis. The initial six months or so is the most stressful time when returning to the work force, says Karen Hartman, the survivorship program coordinator for CancerCare, a New York City-based nonprofit organization that provides free education and support for cancer patients, caregivers and families. "I think people struggle—if they've been away from the workplace for a while—with getting back into the swing of things," she says. There are also physical adjustments, adds Hartman. "There is still a tremendous need to follow up with doctors and have accommodations for appointments and tests. People don't walk out of treatment one day and [immediately] work nine-to-five, five days a week."

Hartman says that employers who hold workers' jobs longer than legally required generally provide supportive environments. Keeping the human resources department updated about your condition during treatment may help you avoid surprises when you return to work, she suggests. However, Hartman says, there is often concern about an employee's ability to perform as well as before treatment, and there is a risk of lack of promotion and consideration for special projects. She suggests dealing with these challenges by being upfront and honest with your employer about tasks that you may or may not feel ready to take on.

For people who need to seek new employment after treatment, there are other issues. Schwerin says that many people who left the work force during their treatment wonder how to explain a time gap in a résumé. "We suggest that people do a skills-oriented résumé instead of a time-oriented résumé," she says. Vocational centers and community colleges may have helpful résumé-writing workshops, she adds.

Living and working with cancer is never easy. However, taking the time to learn about your rights and options may lessen the anxiety. cr endbox