Bearing No Ill Will

By Heather Won Tesoriero

John Kennedy has high hopes that he will feel well enough this year to work. Born with hemophilia, a hereditary blood-clotting disorder, the 41-year-old Chicagoan contracted hepatitis C through blood transfusions given as part of his treatment. The once energetic attorney was forced to quit his job. Now, however, he no longer needs to take a particular antihepatitis drug that left him heavily fatigued, and he plans to return to work for the first time since 1995. "I'm definitely optimistic that I can start practicing law again soon," he says. The trick will be finding an employer who is flexible, understanding and also offers health insurance that is likely to meet his needs. "I know I have to be a little more selective."

Kennedy's quest for employment will encompass the spectrum of issues surrounding chronically ill people in the workplace: the need for flexibility and special accommodations, the high hurdles of re-entry and the challenges that precarious health places on people with a passionate drive to perform but a body that can't always cope with the stress of job performance. According to a Johns Hopkins University study called "Partnership for Solutions: Better Lives for People with Chronic Illness," about 40% of the U.S. working-age population has some form of chronic condition, defined as any that persists for a year or longer. With the number of workers who suffer from chronic illnesses like asthma and diabetes on the rise, and life expectancy extending for patients with diseases like cancer and AIDS, employers are looking for new ways to manage and retain chronically ill employees, attempting to navigate a terrain studded with legal, logistical and insurance land mines.

There are federal laws that can assist chronically ill individuals in the workplace: the 1990 Americans with Disabilities Act and the 1993 Family and Medical Leave Act. Under the ADA, employers may make a "reasonable accommodation" to a disabled worker as long as that person can perform the essential functions of the job. The FMLA gives employees up to 12 weeks of unpaid leave for personal health issues (or those of an immediate family member), with their position or the equivalent guaranteed upon return. But there are various stipulations for eligibility in both laws, and protection isn't guaranteed for the chronically ill.

Kennedy represents the majority of people who take time off owing to chronic illness and return--willingly--to the job market. According to Karrie Zampini, director of postcancer treatment services at New York City's Memorial Sloan-Kettering Hospital, 80% of cancer survivors go back to work. But when they do, they bring with them a very different set of needs and concerns that employers must understand.

Chronically ill workers often need extra time to deal with their afflictions. And time constraints create the greatest tension between such workers and their employer. One of the fastest-growing ways to give people more autonomy in their schedules is by creating a "flexible workplace," according to Karol Rose of LifeCare.com a global provider of workplace-management services. A flexible workplace can range from a part-time arrangement (though this can have salary and benefit implications) to very specific accommodations agreed upon between the employer and an individual employee. Some employers favor what is known as flexplace, or working by electronic extension from someplace other than the office. Other approaches include the compressed schedule, which packs more work hours into fewer days, and flextime, which lets employees adjust the start and end of their workday to their needs. Eve Elberg, 51, of Brooklyn, N.Y., has been back to work since February 2000 after a year-long hiatus because of cancer. The Web and graphics designer was pleased to find that her new employer, a national bank, was open to the idea of her working a few days a week. "They had a lot of faith in me," she says. "My re-entry has been a constant growing experience."

Larger companies can afford on-site health care, which provides them with a better understanding of the limitations illness can bring to the workplace. American Home Products, a global pharmaceutical and health-care manufacturer, has an on-site health-care service that provides blood screenings, allergy shots and diabetic care. "An on-site physician can consult with the employee's personal health-care provider and find good accommodations without the person's having to share the reasons with his or her supervisor," says AHP's director of employee relations, Nancy Konta. "The physician has the trust of our management."

Employees who are out of the workplace for extended periods of time often are worried about job tenure, not to mention making ends meet. One practice that is proving to be a dramatic stress reducer for chronically ill employees is the "sick bank," where healthy employees can donate sick days to a colleague. Second-grade teacher Raquel Allen, 47, of Imperial Beach, Calif., is currently recovering from a double mastectomy. Even though her job with the school district entitles her to only 13 sick days a year, so far she has received 72 anonymously donated days that have allowed her to maintain her salary. Common among unionized governmental agencies, sick banks and similar donation policies (some employers allow people to donate cash in lieu of vacation or sick leave) have grown significantly since they started about 15 years ago.

Help provided by co-workers isn't always formalized. In 1993 Joan Frier, now a public relations manager for SHARE, a national breast- and ovarian-cancer advocacy group based in New York City, started a new job as a legal text editor while recovering from breast cancer. Her bosses sometimes had unrealistic expectations, and it was her co-workers who gave her day-to-day encouragement. "They would take on some tasks for me, cover for my mistakes and help me with new things," she recalls. "I couldn't have done it without these people."

Frier was fortunate that public knowledge of her health condition caused people to rally for her. Disclosure of health status to employers and colleagues is often the source of one of the most daunting fears chronically ill people face. Dawn Quick, 39, of Fort Lauderdale, Fla., was found to have hepatitis C in 1996. Devastated, she nonetheless continued to work as a legal assistant in a prominent law firm. But she shared the news of her condition--in confidence, she thought--with her supervisor. In no time, people began to express condolences. "It was awful-- people coming up to me in the elevators, tapping me on the shoulder while I was at my desk," says the mother of two. Worse by far, Quick was told her position was being dissolved, and she was given three months' notice of termination. The news was heartbreaking. "I loved my work," she says. "I had a great track record and was constantly promoted. I found out I was sick and lost my job." Though the firm denied she was fired because of her health, Quick sued on the ground of discrimination and settled out of court.

Even so, experts insist communication is vital, and say people can't always make proper use of their rights unless employers know how best to accommodate them. Says attorney Susan Slavin of Jericho, N.Y., who represents chronically ill individuals: "Once you open that dialogue, you're protected. You can't advocate for yourself if someone doesn't know your condition."

Advocates agree there is an urgent need for education in the workplace concerning chronic illness. Some of the most difficult situations arise for people with HIV/AIDS, which still carries a stigma in many places. Most of the time, the needs of those with the disease are small but critical to their health. "Many of the drugs must be taken with food, and so the person needs to be eating at all times of the day, not just at lunch. Co-workers may see this and ask questions. So that person is presented with a disclosure issue when he or she hasn't asked for it," says Howard Schwartz, managed-care coordinator at the Gay Men's Health Crisis in New York City. Says gmhc's attorney, Debra Wolf: "I have scores of discrimination cases. Most are situations where individuals are slowly forced out of their jobs."

Both employees and their employers need to know what the law says. gmhc gives its new employees a seminar on the Americans with Disabilities Act and the Family and Medical Leave Act. The forum helps people understand the intricacies of the law and informs them in advance, rather than in the thick of a crisis situation. "Remember what work represents to people," says Sloan-Kettering's Zampini. "It's mastery and control over one's life. Work brings an enormous sense of personal fulfillment and self-worth." And productive workers--even those with chronic illnesses--more often than not give back with interest.

--With reporting by Mark Shuman/Chicago and Stacie Stukin/Los Angeles

With reporting by Mark Shuman/Chicago and Stacie Stukin/Los Angeles