(Interview 7/2013. Oil on linen, 40 ins. x 30 ins.)
Rose got back to me.
"I was suffering from Hep C. I had no insurance. I cared for people everyday as a nurse while they were dying from the same illness. I could not get affordable care due to pre existing. I was hopeless. Through ACA and then medicaid expansion...I was cured with 1 pill a day for 90 days and it cost me $9!!!!! I am a mother, sister, daughter and grandmother....I can now hold my head up without feeling diseased. I can now look to the bright future with my second grandchild on the way...I am blessed...because of ACA and medicaid expansion...You hear me??? 100% cured! it cost $65,000.00 for the meds and i paid $9!!!
A mini-med policy sits in Rose's backstory. The meager coverage blindsided her.
I conjure images of slaps-on-the-back, unscrupulous brokers buying rounds at the bar when they had a good day selling mini-med junk policies (limited-benefit plans) -- a sucker born every minute -- like penny stock scammers conning inexperienced investors.
I would like to meet the person who thinks an insurance policy with an 16% actuarial value is worthy of even being called health insurance. If people really knew they were buying what the industry calls junk insurance, would they?
What happens if we buy flour and get a sack 84% full of plaster dust...if the 3 month warranty ends in 15 days...if we're promised $300 pay but we only get $48? All hell breaks loose, that's what.
Phone calls laced with expletives are made to government agencies. We EXPECT something to be done about it because we're scared. We rely on some state/federal protections when it comes to saving our lives. We need clean water, building codes, airline safety rules, FEMA help to live in the modern world.
Why should health insurance be any different? Why are we, the consumers, the marks in the for-profit healthcare hustle? Insurance means the insured should not be left with insurmountable medical bills. Mini-Med policies did the opposite.
The Affordable Care Act (ACA) put an end to mini-med policies but they reemerge as short-term junk policies, to my way of thinking. Like mini-meds, short term policies exist outside the ACA's consumer protections. The difference is the short-terms are temporary. Temporary what? Temporary money grab. Short-term policies are not good -- another ripoff.
Rose was thousands in debt before she realized her insurance policy paid near nothing
Rose needed medical tests and blood work. She received a statement from her insurance company with “$45” listed on it. She thought the sum was her co-pay. She learned that her insurance would pay only $45 of the entire bill. Medical providers billed Rose $2600 for medical tests and $8000 for blood work.
In 2014 the Affordable Care Act gave Rose a way to get real health insurance. She was thrilled.
Artist Note (2013)
This portrait story comes almost six years into Art As Social Inquiry’s painting series, Healthcare in the US. I never expected this story of redemption. I committed to telling a story about an uninsured woman with liver disease. Along the way I stumbled upon a magnificent story of redemption. The psychological and emotional lives I encounter are every bit as complex and compelling as the myriad and miraculous systems of the physical bodies they inhabit.
(from a 2013 interview)
Licensed Practical Nurse, Age 46, Uninsured
Rose worked for a medical staffing agency. The agency places temporary medical personnel in businesses. One business in particular repeatedly requested the staffing agency to send Rose.
Rose was willing to work the night shift, and more often than not she worked seven nights a week.
Rose felt she was a part of the permanent staff. She was awarded employee of the month even though she was technically the employee of the temporary staffing agency that placed her, not the company giving the award.
Rose paid $400/month for health insurance from her employer, the temp agency. She opted for the most expensive policy. Rose wanted comprehensive insurance. In reality the plan covered very little.
Rose needed medical tests and blood work. She received a statement from her insurance company with $45 listed on it. She thought the sum was her co-pay. She learned that her insurance would pay only $45 of the entire bill.
Medical providers billed Rose $2,600 for medical tests and $8,000 for blood work. Rose's $400/month insurance paid almost nothing. Both bills went unpaid and were sent to a collection agency.
Earlier in her life, Rose took a dark turn. “I could argue for myself on the one hand. On the other hand I feel embarrassed.” Rose knows she made a conscious decision to use drugs, a decision she regrets deeply. She let her nursing license lapse. “I was raised well. I feel guilty and ashamed.“
Now fully recovered and productive, Rose adds, “I keep my chin up and go on.”
Rose would like to pursue a RN-BSN degree and eventually work for the Leukemia and Lymphoma Society (LLS) in cancer research.
When I first posted this portrait story, Rose wanted her identity masked. She feared job discrimination because of her past. She is no longer afraid.
Rose runs marathons to raise money for LLS. LLS funds cancer research and helps indigent patients. “I run about 10 miles per day in addition to my long run every Sunday with my team --Team In Training, The Leukemia and Lymphoma Society. We are currently up to 12 miles and increase by 2 miles every other week until we hit 20 miles, two weeks before marathon day. Then we taper down for our big day when we run in honor of the suffering, present, past and future. We commit to personal fundraising goals while training and only run the marathon if our goal is met.”
Rose knew she was spiraling out-of-control when she was taking illegal drugs. She tried to get into rehab. County services denied her request. One administrator said, “Can’t teach an old horse new tricks.”
Rose was with her boyfriend when he was picked up on drug charges. Uninsured Rose had no resources of her own to check herself into rehab. She pled guilty to avoid a long prison term. She went to state prison for 1 ½ years. Her then boyfriend fought the charges and won. As the Rose put it, “I was in jail for conspiring with a person who did not commit a crime.”
In prison, Rose went into rehab immediately. The prison considered drug use mental and paid to have her treated. She was also diagnosed with hepatitis C in prison but the prison system would not treat it. She was on what was called a pre-release program, a fast track for release. Prison officials said Rose would not be in prison long enough to complete the treatment.
The prison did not treat her hepatitis C. In the end, Rose stayed a full 1 ½ years in prison which would have been long enough to treat her liver disease.
Rose was very afraid. As a nurse, she had seen patients die from Hepatitis C. Her diagnosis included fibroid tissue on the liver putting her at higher risk of liver failure. Rose felt hopeless.
In prison, the staff put in charge of caring for the drug-sniffing dogs. She fed, watered and walked them. She dispensed their medication when necessary. She loved it.
Rose also spent a lot of time in the prison library researching everything she could about drug addiction. She persistently lobbied prison officials to get her nursing license reinstated.
Rose's counselor let her take her state boards. She had to get signed letters from the guards attesting to her character in prison. Her behavioral reports were evaluated.
Rose was released from prison with her nursing license reinstated on the condition that she agreed to be monitored.
As a stipulation of parole, Rose had to go to rehab for 45 days which she was happy to do. She chose to go an additional 45 days to continue the therapy sessions.
After prison, Rose got a job with the medical personnel staffing agency that had previously placed her. She was doing very well. She had a home and new car. Her children were living with her.
Rose thought she had good health insurance through her job with the temp agency. She wanted to get treatment for the hepatitis C which prison doctors diagnosed but left untreated. The $400/month insurance policy covered very little, and she was not able to get treatment for her liver disease.
Rose called the state many times to ask them to start monitoring her, a stipulation of her parole. Eventually the state realized they had not set up the monitoring. They revoked Rose’s nursing license despite her 1 ½ years of personal success and very productive work.
Rose petitioned to have her nursing license reinstated. She had to represent herself because she had no money for a lawyer. She said, “I spent 7 years trying to make it right.” The state determined that the Rose was “in a very strong and lengthy recovery.” Her license was reinstated.
When Rose’s nursing license was revoked, she received unemployment compensation. This benefit ended over a year ago. Rose cleans houses and babysits but she is still 6 months behind in her rent. “I look tirelessly for a job. It’s a red flag – a 45 year old woman looking for a minimum wage job when she’s had 20 years nursing experience. Why is she looking for a minimum wage job?”
Rose tried to get treatment for her hepatitis C. She called private insurance companies. She was told that she would have to wait a year before her preexisting liver condition would be covered. She did not know what the premium would be for somebody with hepatitis C. The drugs to treat her condition fall into the same category as some cancer drugs. "Costing a whole year’s salary for some people,” she said.
Rose gave up looking for private health insurance.
A major medical center helped Rose get donated medicine. Injections cost $800 each. She was required to pay for the doctor visits and lab work. She needed blood tests every 2 weeks. The bills went into collection. “If I had been working, I could have paid a little each week.”
Rose experienced some side effects: metallic taste in her mouth, cloudy mind, burning skin, constant nausea, hives, itchiness, eczema patches, and cracks in skin that would not heal. Even her tears burned. This went on for a full year.
Rose applied for Social Security Disability Insurance. The welfare department said “she wasn’t sick enough.” She did not meet the criteria for disabled.
A month after hep C treatment, Rose's blood tests were good. Soon afterwards, however, the viral load shot up and Rose was no better than when she started. It took another year “to get the chemicals out of my body. I felt lousy the whole time.”
Rose still has no insurance today. “I have no clue what condition I am in. It’s horrifying. I’ve taken care of people who have died from Hep. C. My life is on the line. Nobody pays attention because I don’t look sick. My type of hep C is chronic and terminal.”
Rose wrote me excitedly at the start of the year. She is now employed and getting health insurance through her employer. Rose is able to buy a single health insurance policy on the Affordable Care Act's (ACA) online marketplaces. She cannot be refused health coverage because of her health history. Rose is getting comprehensive coverage along with subsidies to help pay premiums she can now afford. Rose says, “I am overwhelmed with relief!!!!!” (The 5 exclamation points are hers.)