Wendy Schwartz, 35, survived ovarian cancer, but three years into a clean bill of health, she is almost out of money, underemployed and wishing she had known sooner about the legal rights that might have eased her struggle.
In hindsight, the former schoolteacher understands that a complex safety net of insurance and employment rights for cancer patients, many of whom are living longer because of early detection and improved treatment, would have been nearly as important as surgery and chemotherapy.
"When you just get a cancer diagnosis, you're so overwhelmed by everything that you're not thinking about what government programs are there to help me," said Schwartz, an Arlington Heights native now living in Evanston. "You're just thinking, 'Am I going to live? Am I going to lose organs?' You have the cancer blinders on."
Guiding patients and caregivers through the challenging legal maze is the focus of the Cancer Rights Conference on Friday in Chicago, the first of three such sessions across the country. About 200 people are expected at the free, all-day event at the Courtyard Marriott Chicago Downtown/River North, where the focus will be on health insurance options, health care reform, taking time from work and the education rights of children with cancer.
The conference aims to help cancer patients and their families, said Joanna Morales, director of the Cancer Legal Resource Center, a Los Angeles-based nonprofit that is sponsoring the conference, and a professor at Loyola Law School in Los Angeles.
"It's traumatic enough to get the cancer diagnosis," Morales said, "but to not know where your next dollar is going to come from to pay for your rent, or if you're going to be able to pay for your treatments … we would like to be able to eliminate that stress so that they can just focus on their health."
Federal and state laws provide a patchwork of protections for cancer patients and their families. The Family and Medical Leave Act of 1993 entitles employees to take up to 12 weeks of unpaid, job-protected leave to care for family members or undergo treatment in a 12-month period. It applies only to companies with 50 or more employees within 75 miles of the workplace.
More than a few employers could use a briefing on the leave act, Morales said.
"We still see people get fired after disclosing their diagnosis. We still see people being fired because they're trying to utilize family and medical leave time," she said.
Illinois is not among the handful of states with broader medical leave laws, but some smaller businesses in the state also offer patients and caregivers similar options, according to Monica Fawzy Bryant, director of the Cancer Legal Resource Center's Chicago-based office, which opened last year.
"Just because you work for a smaller employer doesn't necessarily mean you don't have any benefits," Bryant said. "Many smaller employers will allow for time off from work."
Additional protections for cancer patients are provided by the Americans With Disabilities Act of 1990, which requires businesses with 15 or more employees to make "reasonable accommodations" — ranging from allowing telecommuting to remodeling facilities — for workers with disabilities. Illinois law extends protections to workers regardless of business size, according to Morales.
About 1.5 million new cancer cases were diagnosed in the U.S. last year, including nearly 64,000 in Illinois, according to the American Cancer Society. Nearly 570,000 people are expected to die of cancer this year. That is second only to heart disease.
Early diagnosis and better treatment — primarily surgery, chemotherapy and radiation therapy — led to a 68 percent five-year survival rate of all cancers diagnoses from 1999 to 2005. During the 1970s, that rate was 50 percent.
More survivors, a difficult economy and new health care laws have made the Cancer Legal Resource Center very busy of late. The 14-year-old organization worked with about 23,000 people last year through seminars, events and its telephone assistance line.
The center has a staff of nine and an annual budget of about $600,000. It doesn't provide legal representation and urges resolution of issues without litigation, Morales said.
"Most of the time we're trying to navigate people through systems to get resolution to their problems immediately, rather than through the legal system," she said.
Such help came a little late for Schwartz, who was diagnosed in 2004 with borderline ovarian cancer while working as a kindergarten teacher in New York. She moved with her husband to Chicago that year, two months after surgery to remove two cysts.
She taught for one year at a Chicago religious day school, but took some time off after that to work on her marriage. She and her husband separated in March 2007, and her cancer recurred six months later, necessitating a full hysterectomy and six rounds of chemotherapy.
The couple delayed a divorce so Schwartz could keep her husband's health insurance coverage. When she hit the three-year mark of being cancer-free this spring, they split for good, and Schwartz now has a temporary COBRA plan that she must pay for.
She is considering applying for Social Security disability benefits, something she learned about while attending last year's Cancer Rights Conference. She works part time in advertising sales but has depleted much of her savings, is on food stamps and receives charity care from Rush University Medical Center.
"I'm realizing that I should have applied because the last couple of years I wasn't working and now I'm divorced and I'm having financial problems," she said. "It turned out that I wasn't able to work for a year after my treatment because of the effects that chemotherapy and the surgery had on my body."
Grateful to be cancer-free, Schwartz volunteers at Chicago-based Imerman Angels, a nonprofit network that links cancer patients and caregivers with more than 5,000 peer mentors across the country. The mentors mostly offer emotional support and encouragement. She also recommends that patients learn their legal rights.
"To say that this is a detour from the way I thought my life would be, especially at this stage, is a huge understatement," Schwartz said.
To sign up for the conference, go to http://www.cancerrightsconference.org.Copyright © 2014, The Baltimore Sun