I originally met Theresa Pussi Artist BrownGold in a healthcare advocacy group online. When she learned about my husband's story, she was interested in painting his portrait for her Healthcare In the United States series. Maybe one day I'll post his portrait in this blog, but for now, these are the stories that I'm worried people have forgotten or ignored -- classic cases of "Well that happened to them, but it couldn't happen to me."
I encourage every reader to visit Healthcare In the United States.
(oil on linen, 40 ins. x 30 ins.) (Interview 10/2011)
Adjunct Sociology Professor, Writer, Health Advocate, 38, Insured. Previously, High School Health Teacher, 27, Insured (during time of health crisis) :
On the morning of January 29, 2001, subject heard her own voice slur as she was saying goodbye to the dog and leaving for work. She kept repeating her words to listen to her own babble. Her face went numb. "I'm 27," she said to herself. "A stroke can't be happening to me." The symptoms went away. She drove to work. A co-worker suggested she might have Bell's Palsy.
On February 2, four days later, while the subject was teaching her class, the symptoms reappeared. This time she went to an emergency room. She got a CAT scan and was admitted to the hospital at 11:30 at night.
If the subject had gone to the emergency room when she first experienced symptoms on January 29, she would have been uninsured. Her 6 month waiting period to be eligible for health insurance coverage at her teaching job did not start until February 1. She went to the hospital on February 2, one day after becoming eligible for insurance. The subject talked to the office assistant at the school where she taught. "The woman was sweating it out counting the months until I was eligible for health insurance. Had I gone to the hospital when I first had symptoms, I would have been uninsured. I qualified for insurance by ONE DAY! "
The subject spent a week at the local hospital where they confirmed she had had a stroke. They did extensive blood work, a spinal tap and checked for multiple sclerosis and lupus. A month later her neurologist sent her to a teaching hospital in a neighboring state. She consulted two hematologists. She was diagnosed with a clotting disorder.
Subject, being a first-year teacher had to take more sick time than allowed. Her wages were garnished to cover the unapproved sick time. Her take-home pay was almost nothing. At the time, subject's husband was a full-time graduate student. He was not earning any income. The family had little income. To stop subject's wages from being garnished, her co-workers offered to give her their sick days. This was not allowed by employer. Instead, coworkers covered for her when she needed time off to go to the doctor.
The doctors at the teaching hospital were "out-of-network", as the subject would later discover. Many of their charges were not covered by her insurance. However, the lab tests done at the hospital were covered. The hospital would "pay for the MRI to be taken but they would not pay to have it read." Subject first realized that a big chunk of her medical care was not covered when the "bills started rolling in," as she put it.
At 27 years old subject found herself spending much more energy dealing with her medical bills than on figuring out her medical condition."I was naive. I didn't know the game, the tricks. So many bills. I asked the billing department why something wasn't covered. They didn't know. Maybe blood was taken in the hospital but sent to a lab out-of-network. I'd get a bill for $500 which was 75% of my paycheck. I was lying in the MRI machine thinking 'How much is this going to cost and am I covered? How much more fighting am I going to have to do over this bill?' I was ill but most of my energy was spent on the medical bills and trying to stay afloat. I became afraid of the mail. I'd recognize the look of the 'Explanation of Benefits' envelope and wonder who I was going to have to fight."
Subject was getting notices from collection agencies - first, second and third notices. Panicked, she gave them a credit card number. " I am a very responsible money manager. We never had credit card debt. I became very desperate. Now I was paying 19% interest on hospital and doctor bills. I should have had a payment plan. But I got scared because of the collection agencies....expensive mistake. Then I learned the game. I turned into a crazy person on the phone with customer service." At one point subject hyperventilated on the phone with a customer service representative. But eventually, she learned the language of doctors' billing departments. She would make sure that her procedures were coded properly to get the most payment from the insurance companies.
"The stroke was easy. That was nothing. Health insurance and billing were tough. It's an industry with no controls. Where is the responsibility for the product?"
After a year of intense wrangling with billing departments, $8,000 of uncovered medical claims, hours on the phone, credit card debt, subject said she "dropped out." "I just wanted peace -- relief from the financial nightmare." Finally she just asked the hospital's billing department, "How much do I have to pay to keep you off my back?" Twenty-five dollars a month. Although still in debt, she would not be hounded by the collection agencies. "I was paying for peace."
Subject was seeing her hematologists every 3 months. Eventually she just stopped because she felt her disease was being managed and she did not want any more bills.
In 2002, subject was diagnosed with Crohn's disease. She knows this is another "pre-existing condition" on her medical records. And she knows she cannot have a lapse of coverage or she could end up uninsurable. "I am more experienced now in playing the game."
Today, subject is insured through her husband's job. She has been careful to never have a lapse of health insurance coverage. She takes daily medication for the blood clotting condition which allows her to lead a full and productive life. (Interview October 2011) (oil on linen 40x30 in.)
Statement from the subject: I was plagued by uncertainty and fear of screwing up by going to an appointment that wouldn't be covered by insurance. What if I didn't jump through the hoops right? I have insurance but no faith the appointment would be covered. I feel like the insurance companies try to confuse you. In our system you have to be your own advocate And most people are not told how to do that. I carried my medical records to all my appointments to educate the doctors. Electronic medical records would prevent costly mistakes. Even if I was told something was going to be covered, I had no faith that it would be. The system is broken.
Artist's Note: At the start of the interview, the subject showed me a stack of files about 5 inches thick. These files contained correspondence with her insurance company about her coverage for her stroke. The ordeal inspired Holly Gonyea Dolan to travel her state,Pennsylvania, to interview folks and explain the Affordable Care Act by using the circumstances of their lives. The results of her one-year journey can be found on her blog, Health on the Horizon. http://healthonthehorizon.blogspot.com/