Nobody wants to hear they have cancer — not the teenager who expects to make the varsity softball team as a freshman, the PhD candidate preparing to defend his dissertation, the young physician who lives next door or the grandmother who lives down the street.
Yet, almost everyone knows someone whose life has been changed, often dramatically, by a cancer diagnosis. The American Cancer Society estimates that 30,560 new cases will be diagnosed in Minnesota this year. The good news is that most of those people will be successfully treated. That is not without a cost, however. Many costs, in fact — not the least of which are the physical and emotional tolls cancer treatment (surgery, chemo and radiation) exacts from patients and loved ones for weeks, months and even years.
Less obvious than the physical and emotional side effects of cancer treatment are the practical, financial and legal challenges cancer patients and their families face. Lindy Yokanovich, Founder and Executive Director of Cancer Legal Care (CLC), learned firsthand how devastating the effects of cancer can be when she was in high school and her mother was treated for colon cancer. Her family lost their health insurance coverage, but lifesaving treatment continued thanks to the kindness of her mother’s physician.
“My mother’s ensuing uninsurability and the financial fallout, however, caused incredible stress for years and years after she got better,” Yokanovich recalls. “I thought there just had to be a better way.”
Aaron Grey, recently named one of the five Directors in Mental Health and Addiction Services at Allina Health, was working as an oncology social worker at Virginia Piper Cancer Institute when he first encountered Cancer Legal Care, then known as Cancer Legal Line.
“No one else was providing that service, yet it was so desperately needed,” Grey says. “When you have cancer, 100% of your energy needs to go for healing. When patients walk through the treatment tunnel, they need a translator or someone who can help them understand and deal with the complex issues around insurance, finances and employment.”
Brian Rank, MD, Co-Executive Medical Director at HealthPartners and a practicing oncologist for almost 40 years, has seen numerous changes in the medical field. Advances in science have created new options for cancer management and more potential for cures, but there are still plenty of burdens associated with a potentially lethal diagnosis. He sees affordability as the biggest challenge — one that affects patients and the medical community alike. Even people with good health insurance can be financially devastated by deductibles, copays and uncovered treatment costs that can run into thousands of dollars per month. The job of the clinician, Dr. Rank believes, is to understand what each patient needs and then to help the patient connect with appropriate resources — spiritual, emotional, material, legal and financial.
In a study titled “Death or Debt? National Estimates of Financial Toxicity in Persons with Newly-Diagnosed Cancer,” The American Journal of Medicine estimates that two years after a diagnosis of cancer, 42.2% of more than 9 million individuals ages 50 or older would have depleted their entire life’s assets. Four years after diagnosis, an estimated 38.2% would still be financially insolvent.
Although a majority (87%) of cancer diagnoses occur among individuals ages 50 and older, younger people are especially vulnerable to the nonmedical fallout of cancer. How do people safeguard their job, update their will, receive the disability benefits to which they are entitled, establish a financial power of attorney, or ensure that provisions for the care of loved ones are in place? These are the kinds of issues CLC helps cancer patients and their families address — for free.
When someone calls CLC, the first question is: How can we help? The “we” refers to a staff of six — three attorneys, a health insurance advocate, a paralegal and an office manager. The majority of CLC clients need answers to the many financial and legal questions that keep them up at night and a road map for moving ahead. CLC staff attorneys J. Lindsay Flint and Julie Olmsted provide this information free of charge to anyone affected by cancer, and they build relationships with their clients so that future issues can be addressed quickly.
CLC also connects clients with the rich network of cancer support services — such as the Angel Foundation, Open Arms of Minnesota, Gilda’s Club, The Firefly Sisterhood and Jack’s Caregiver Coalition — here in Minnesota. If a client needs additional legal services, such as estate planning, and meets income guidelines for pro bono services, CLC staff attorneys will provide these additional services or match the client with a volunteer attorney in the community. Often, clients say that hearing the caring voice of someone who understands what they are going through is almost as important as the advice they receive. Flint, a two-time cancer survivor herself, is well known for her calm, reassuring manner, not to mention her skills as an attorney.
Nancy A. Hutchison, MD, a physician in the Department of Physical Medicine and Rehabilitation at Allina Health, specializes in cancer rehabilitation. A longtime activist in the cancer field, Dr. Hutchison says the assistance CLC provides is really important to quality patient care, especially in this era of patient empowerment and shared decision-making. She believes all members of the physician care team need to pay attention to the financial and legal stressors that get in the way of healing. “We can’t deliver the best care if we don’t know what’s at the forefront of our patients’ minds,” she says.
Assessing patients’ nonmedical challenges doesn’t need to eat up a lot of clinical time, Dr. Hutchison notes, but physicians do need to structure care plans around practical considerations and encourage patients to take advantage of services such as CLC. She herself finds it useful to ask patients about their biggest concerns during the initial visit.
Dr. Hutchison’s advice for colleagues is to build simple, time-saving steps into everyday routines. Make sure brochures for support organizations are readily available and handed to patients before they leave the office. Develop “smart phrases” that can be inserted into the follow-up visit summary with a single click of the mouse. The phrase can be as simple as: “Call Cancer Legal Care — 651-917-9000. They can help you with the concerns you raised today.” And if they can’t, Dr. Hutchison points out, they will know what organization can.