Pulse
More than Medical Needs
When patients are newly diagnosed with cancer, the medical system is there to support them through the treatment process. But cancer patients often struggle with nonmedical issues, too. Concerns about financial and legal issues can keep them worrying well into the night, according to Lindsay Flint, J.D., an attorney and ovarian cancer survivor. “I don’t think most people know where to go for [help for] those things,” she says.
Stillwater attorney Lindy Yokanovich, J.D., made a similar observation as she watched friends and relatives struggle not only with the side effects of treatment but also with stress caused by bills, insurance, and concerns about work. “I thought it shouldn’t be that way. And I thought that as an attorney, there might be something I could do to help,” she says. Six years ago, she founded Cancer Legal Line.
Realizing that what survivors needed most was information, she conceived of Cancer Legal Line as a sort of clearinghouse for information about and legal help with issues such as employment discrimination, estate planning, bankruptcy, losing health insurance, and applying for Social Security and disability coverage. “We provide information and education,” Yokanovich says. “We can explain the way the law works and help people understand it. About half the time, that’s all they really need.”
If they do need more, Cancer Legal Line has a referral network of attorneys who specialize in employment, disability, estate, and other areas of law. Yokanovich will help determine if clients qualify for financial assistance or connect them with attorneys who will provide some services pro bono. Yokanovich first learned that cancer survivors struggle with more than medical issues when her mother had colon cancer in the 1980s. Although her mother’s treatment was successful—she’s now a 30-year survivor—her parents grappled with insurance issues that caused more heartache than the cancer itself. Unable to get coverage in the United States, they turned to a company in the Netherlands. The family had to pay each bill in full before the insurer would reimburse them. The process was expensive and time-consuming. “I saw the emotional toll it took on my parents,” Yokanovich recalls.
About a year and a half later, when her mother’s doctor learned of the arrangement, he told his staff to mark her bills paid immediately in order to expedite the process. Her mother’s relief was palpable. “I was just 15 at the time, but I understood how this doctor’s actions completely changed things for my mom,” she says. “I feel like that’s what we’re trying to do here at Cancer Legal Line, trying to help people get through this situation in the easiest way possible,” she explains.
Yokanovich says the overarching issue for patients who call Cancer Legal Line is the financial devastation that often accompanies cancer. The 2006 National Survey of U.S. Households Affected by Cancer found that in families where a member had cancer, the experience caused them to use up all or most of their savings; 13 percent had to borrow money from relatives to pay bills; and 3 percent declared bankruptcy.
Cancer survivors also struggle with employment issues. “They’re terrified of losing their job,” Yokanovich says. And even years after a person has received a clean bill of health, a survivor may have questions about whether to disclose information about their medical history to a potential employer. Yokanovich says people are relieved when she tells them that under the Americans with Disabilities Act and the Minnesota Human Rights Act, a potential employer cannot ask about someone’s medical history during their initial interview. They can only explain the job requirements and ask if the person is able to perform them.
Since Cancer Legal Line began operating in October 2007, it has provided case consultations to more than 350 people and provided or secured more than $600,000 in pro bono services. Yokanovich is now exploring how Cancer Legal Line might branch out. “One concept we’re looking at creating is a medical-legal partnership, where we would actually have a legal clinic inside the oncology setting,” she says.
Doug Yee, M.D., director of the Masonic Cancer Center at the University of Minnesota, sees potential in bringing the legal resource into a medical center. “In my view, it’s an attempt to try to provide complete and comprehensive care for patients undergoing cancer treatment.”—J. Trout Lowen
The Care Gap
Teenagers haven’t always fit in well when it comes to cancer treatment. Although their five-year survival rate is between 65 and 75 percent, depending on the type of cancer, they have not benefited from some of the advances that have led to even higher rates among younger children.
Research suggests a number of possible reasons for this. One is that teens often are diagnosed later, as they tend to delay seeking treatment for problems that may be the first sign of cancer. Another is that they aren’t enrolled in clinical trials as often as younger children and adults. A third is that they’re often treated in adult hospitals rather than pediatric facilities.
Studies have shown that adolescents treated in pediatric hospitals for a variety of cancers including acute lymphoblastic leukemia, Ewing’s sarcoma, rhabdomyosarcoma, leukemia, and non-Hodgkin lymphoma have better outcomes than those who are treated in an adult facility. “A lot of adult protocols are based on the 60-year-old who has other comorbidities, whereas with young adults, cancer is usually the only problem so they can be treated with more intense chemotherapy regimens,” says Susan Sencer, M.D., a pediatric oncologist at Children’s Hospitals and Clinics of Minnesota, which ramped up its oncology program for adolescents and young adults five years ago in response to the emerging evidence.
Sencer explains that teens tend to get more individualized attention in pediatric facilities. “We tend not to have the same volumes as adult cancer centers. And we recognize that adolescents and young adults are in different developmental stages,” she says, explaining that the biological make up of tumors can differ with age.
Last year, Children’s enrolled more than 90 percent of eligible oncology patients in clinical trials—four times the national average for 15- to 19-year-olds. Its hematology/oncology patients experience lower mortality rates than patients treated at other pediatric hospitals in the United States, according to data from the Pediatric Health Information System, a national database used to compare children’s hospitals on key quality measures.
In addition to addressing the usual side effects of treatment, Children’s program for adolescents and young adults addresses the emotional ups and downs of dealing with a life-threatening disease at a critical period in their life. “Teens are moving toward independence, and a diagnosis of cancer can push them back,” Sencer says. “The family again becomes primary in the person’s life, and that changes the dynamics sometimes in a good way and sometimes in a not so good way.”
She says one way they help teens with cancer feel more normal is by sponsoring camps and events where they can meet and support each other. “They bond so unbelievably, it’s really important.”–Kim Kiser