Nora’s story

Chronology of a short life, cancer and limited access to health care

Nora Longley made this entry on her blog in April, 2009: “I feel like I haven’t lived enough to be ready for now.”

Nora Longley made this entry on her blog in April, 2009: “I feel like I haven’t lived enough to be ready for now.”

They called it a “Noramorial”-the memorial gathering for Nora Longley, a bright, funny, jazz-loving, 27-year-old woman who died from adrenal cancer on May 9, 2009. She graduated from college with an art history major and planned on graduate school, but along the way she was sidetracked by cancer. And, along with the cancer came the challenges of not having access to health care. Her mother, Nance Longley, shared her thoughts about that journey with the Minnesota Women’s Press.

Living on her own
After graduating from college in 2004, Nora was no longer eligible for coverage under her parents’ health insurance. She felt fortunate to find full-time work at a local retail store that offered insurance. The catch was that she was not earning a lot of income and she had to pay the premium and had a $500 deductible. “That might not sound like a lot, but for a person just out of school who wants to live on her own and be an independent adult, that $500 kept her from going to the doctor,” Nance said.

Soon after leaving school, Nora started noticing symptoms, but ones that might not seem unusual for a young woman: anxiety, weight gain, out of control acne. She didn’t think she could afford the cost of a doctor visit. A year later, as the symptoms greatly magnified, she finally visited a doctor who suggested more exercise, a change of diet and perhaps a different birth-control prescription. The doctor asked her to come back in six weeks.

In the meantime Nora was accepted into the docent program at the Walker Art Center. It was an opportunity to use her art history degree, build her resume and get experience before going to graduate school. To accommodate the schedule, she left her retail job for a waitress job that was flexible but paid less and had no insurance.

Her health symptoms worsened, but she felt she could not afford to go to the doctor. That follow-up office visit didn’t happen.

In the spring of 2005 Nora applied for MinnesotaCare, a program for Minnesota residents who do not have access to affordable health insurance. Her symptoms grew worse over the summer. By fall she had not heard back from MinnesotaCare. Her application had been lost and she had to reapply.

At the same time, her symptoms were spiraling out of control, with her anxiety growing to manic episodes. She felt that she couldn’t wait for the state insurance plan any longer so she found a free neighborhood clinic through the Neighborhood Involvement Program. Because the staff was all volunteer, it took several weeks before she could see a doctor. Blood work found that her hormone levels were off the charts.

Nora was then referred to a clinic at Abbott Northwestern for uninsured and underinsured patients where she was finally diagnosed in December 2005 with a rare form of adrenal cancer. Just after she was diagnosed, six months after her original MinnesotaCare application, she was notified that she was ineligible for MinnesotaCare because the income from the previous retail job had put her over the income limit.

“It is a funny little dance you do with your kids,” Nance said. “They are adults. You want them to be independent. You don’t want to nag them or step in too much.” But at this point Brian [Nora’s father] and I stepped in and took a more active role. Brian provided more of the solid emotional support. I was almost obsessively researching her cancer.”

In January 2006 Nora had surgery to remove a 14-centimeter tumor on her adrenal gland.

Because the drugs she needed after the surgery caused severe depression and exhaustion, Nora was physically unable to live on her own, continue working or continue in the docent program. She moved in with her parents and sister. “That was really, really hard. She felt like her life had ended. She was 24 [years old] with all kinds of dreams [for her life].” Her sister Hannah gave Nora her bedroom and moved to a different one in the house. Cait, her sister who was away at college, found it scary to be so far away at that time.

The toll on others
“It’s every parent’s nightmare that their kids might get sick,” Nance said. “We spent so much time in terror trying to figure out what to do that I could hardly get up in the morning. Emotionally I was completely out of it. I could not function at work. I very much needed to see a therapist but there was no crisis counseling available through my health plan. The wait was six weeks to see a counselor and I could only see my M.D.

“My anger was directed more at the bureaucracy than the individuals,” Nance continued. “Health and Human Services in Minnesota is so underfunded and overworked. The policy is that in order to qualify for insurance through MinnesotaCare you had to have been without insurance for four months. And then later being told that she was ineligible based on income from a previous year [and a job she no longer had] was terrifying and frustrating for us. [Once she did quality for assistance], we kept holding our breath that at any point they would deny coverage.”

Eventually, Nora became eligible for General Assistance, Medical Assistance and finally Medicare because she was unable to work and had no income. A combination of government programs, clinical research trials, foundations and her parents’ resources covered her health-care expenses. “In the end Nora had a safety net but there are so many people who don’t,” Nance said. “Imagine what all of that cost everybody in the long run for not having access to the care that she needed up front.”

Nora lived 3 1/2 years beyond her surgery. “Had she been seen a year earlier it would have been much more treatable.” Nance said. “You have a better chance of surviving. There are people who have survived 20 years [with early treatment].”

“It’s not fair for [only] some of us to access health care,” Nance said. “[A family member] and some of my friends who have a small income are caught in the middle. They can’t afford a premium, even with a high deductible. They live simply. They make just enough to disqualify them. I know they have health issues. It is sad to see them not going to the doctor or not getting prescriptions because they can’t afford it. We hear about this all the time but when it is real people you know it really upsets me. People deserve better. If our [elected representatives] had to find their own health insurance, we would have a different plan for all of us.”