Slipping through the cracks in health care

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What happens when you tear a muscle and don’t have health insurance? Or when you lose your insurance and you’re still sick? Half a dozen Minnesotans shared their health and insurance stories, from a torn muscle in the Smoky Mountains to epilepsy in England.

Derek Miller: Sacrificing career to get health insurance

Local theatre artist Derek Miller went for many years without health insurance.  In 2003, hiking in the Smoky Mountains on the Appalachian Trail, he slipped over the rocks while it was raining.  He tore a muscle pretty much in half, and had to hike 15 miles to the closest ranger station (which was closed due to cutbacks.)  Finally, he was able to find someone to give him a ride to the emergency room, where x-rays were taken and he was given a prescription for a drug that was basically extra strength Ibuprofen. 

Luckily, he hadn’t actually broken his foot, but bills started coming for the x-ray technician, the x-ray machine, the prescription, the emergency room, the doctor: in total, more than $3,000. It took him two years to pay off the debt.  “I was lucky,” Miller said. “What if my foot had actually been broken?”

After that experience, Miller pretty much stopped going to the doctor altogether. Fear of the exorbitant fees he experienced after his Smoky Mountains injury made him avoid the doctor even when a mirror fell and broke on his back when he was volunteering for a theatre group.  “I literally duct taped bandages on my back,” he said. 

Derek Miller in Out of Cordoba for Teatro del Pueblo’s 2008 Political Theatre Festival.  (Photo by Hector Roberts.)

Miller was fearful of the emergency room both from his own experience and that of his father, who worked for a factory.  “I’ve seen him get hurt,” Miller said. “You always end up paying for something… I’m really reticent to go to the emergency room unless I’m dying.”  

 

Nora Longley’s story

Two years ago, the Minnesota Women’s Press highlighted the heartbreaking story of Nora Longley, a 27-year-old woman who died of adrenal cancer on May 9, 2009. After graduating from college, Nora was no longer eligible for her parent’s health insurance, and put off going to the doctor because her retail job offered insurance that carried a $500 deductible. When she finally consulted her doctor about her symptoms  — anxiety, weight gain, and acne —  the doctor told her to make a few changes and return in a few weeks. Longley never made another appointment, because she couldn’t afford it, and didn’t want to ask her parents for help. 

When given the opportunity to participate in the Walker Art Centers’ Docent program, she had to quit her job that offered insurance in favor of a waitress job with a flexible schedule, and no insurance.

As Nora delayed going to the doctor because of the cost, her cancer worsened much faster and went undiagnosed and untreated longer than if she were getting regular checkups. 

Nora’s mother, Nance Longley, said the healthcare situation has improved some since her daughter’s experience. With the Obama administration’s health care reform legislation, young people can now be covered under their parents’ plan until they are 26. Despite that change, Nance Longley still sees health care as “a huge social justice issue.” 

Before she died, Nora was active in groups trying to get single payer insurance, and Nora’s uncle went with a group to Washington D.C. fighting for health care reform.  As for Nance Longley, who is a graphic designer and interacts with many freelance photographers and other artists, she sees every day how this country’s health insurance situation lets people fall between the cracks.

“My daughter went to school in Canada,” Longley said, “and I know in Canada it’s not perfect either, but at least people feel they can go to the doctor when they feel sick.”

Eventually, as Miller entered his thirties, he realized that he could no longer continue to not have insurance. He worked for years doing theatre for young audiences, teaching as an artist, performing puppetry and other artistic endeavors that paid him enough to get by. Though the artistic work was professionally fulfilling, it did not provide insurance, so he now works in an office setting where insurance is provided by his employer.  “The last thing in the world I ever wanted to do was work in an office,” Miller said.  

Laura Holway: On again, off again coverage, but bills keep coming

For years, local choreographer and multimedia artist Laura Holway paid for her own insurance.  As an artist, she never had an employer who provided benefits, but she always made sure that she was covered, in case of disaster.

And Holway has had her share of disasters. Her insurance policy had a high deductible, and Holway ended up paying a lot of money for health troubles involving her reproductive system. She paid even when doctors made mistakes — like the time a doctor insisted that she had a high heart rate and she had to go to ER, costing her thousands of dollars, or the doctor who prescribed her a drug that sent her into labor, even though she wasn’t pregnant. All of that had to be paid for.

“And it’s not like one person is billing you,” Holway said. “There are six people billing you, and they each have a minimum of $100.”  It took her years to pay off her medical bills. 

When Holway, who supplements her income from choreography and teaching by working as a server at Barbette, knew that she was going to have to have surgery, she decided to move to full time work at the restaurant in order to qualify for health insurance. She counted on the insurance to cover a surgery that she needed.  Unfortunately, her hours were cut at Barbette during the past winter, and she wasn’t allowed to keep her health insurance. 

Before her benefits ended, she thought it would be a good idea to get a physical, and she ended up getting an abnormal test result.  “After that, no one would insure me,” she said. 

She couldn’t even go back to the Blue Cross plan she had before getting Barbette’s plan.  Once they rejected her, she had to then write on applications for other health care plans that she had been rejected, and no one would accept her.

Finally, another dance artist, Megan Mayer, suggested to Holway a health insurance broker who aided her in getting on the Minnesota Comprehensive Program (MCP), for people with pre-existing conditions.

“It’s a good thing that I speak English and have a college degree,” Holway said. “That paperwork is a real bitch. It took me weeks to complete everything, and they make you pay it back from the day you lost your insurance.”

Once Holway has a clean bill of health and waits six months, she’ll be able to apply for regular private insurance again. She has decided not to go on Barbette’s plan again.  “At this point I don’t want to have to work a certain number of hours,” she said.  It’s  important for her to continue teaching and choreographing, which make an additional full-time job very difficult. 

Kay Franklin: No transplant at any price

Michael David Franklin, Ph.D. from the University of Minnesota, tells the story of his mother, Kay Franklin. She lost her health insurance when Franklin’s father, Joe, decided to start his own business laying fiber optic cable lines after working 20+ years as a UPS worker.  Unfortunately, the business failed, and the couple went into foreclosure. 

Kay began developing symptoms for what turned out to be pulmonary fIbrosis, a condition which was creating scars in her lungs, slowly suffocating her.  There is no surefire treatment, and because of the couple’s financial troubles, they did not have private insurance. 

A year went by until she was able to get on a rudimentary plan, but it wouldn’t cover anything they deemed “experimental,” including a lung transplant.

The family pooled resources, and approached a transplant center, asking if they could pay in cash — to the tune of $100,000 — for her transplant.  The center said no, because even if the family had money, she could only get on the list if she had insurance. “They told her upfront that it doesn’t matter if you don’t have the money: if you don’t have insurance, you can’t be on this list,” Franklin said.

Sic months later, Franklin’s father was able to get a job, which allowed them both to get insurance. By that time, his mother had gotten pneumonia, so she would have to recover first before getting a transplant.  And her new insurance wouldn’t cover the transplant anyway, because it was a pre-existing condition.  She died several months later. 

Isabel Nelson: Malaria in England

People who have had health care issues while staying in other countries see firsthand the differences in attitudes toward health care between the United States and the rest of the world.

Local theatre artist Isabel Nelson was living and teaching in Uganda when she contracted malaria, despite being on anti-malaria medication.  She discovered that she had the disease later, while living in England. 

She had no national health insurance number or I.D., so she didn’t go to the hospital right away when she felt sick. “Being the American that I am, I wasn’t accustomed to going to the hospital,” she said.  She let her symptoms go for a week before finally checking into the Center for Tropical Diseases in London.  She waited for an hour before a doctor saw her.  They did a number of blood tests, and asked her to come back a couple of days later. They told her she had malaria and gave her two prescriptions. She paid just under seven pounds (less than $14) each for the medicines.  The center called her to follow up to see how she was. “I’m really lucky,” Nelson said. 

James Lekatz: Covered in England, denied for pre-existing condition here

Local composer James Lekatz also got sick while living abroad.  While he was living in England, he was diagnosed with epilepsy.  He got CAT scans, MRIs, and other procedures for free.  When he returned to the United States, he was denied coverage because of his preexisting condition. Finally he found a plan that cost $300 a month, but had a $5,000 deductible.  Because he had to deal with his epilepsy condition, he went into considerable debt trying to get treated.  He is still paying off the debt. 

Now, Lekatz works for a bank, a job that gives him benefits.  “It’s one of the main reasons that I keep my job,” Lekatz said.  “I need to have health care.” Before living in England, he had made enough money teaching and doing other things in the arts.  Now, however, he feels that he is tied to having a job that provides an insurance plan.  

For a more in-depth look at the health care issues that face Minnesotans, check out Bruce Johansen’s article about the facts and figures that face Minnesotans today.

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