(Interview 3/2018, oil on canvas, 30 ins. x 40 ins.)
Artist Note (2018)
If you live in Pennsylvania and you voted for Governor Tom Wolf in the 2014 gubernatorial election, you helped save Adrianne’s life.
Illness has sidelined Adrianne’s life plan since she was diagnosed with a crushing illness. Her portrait story has “Insured” in its title -- “College Graduate, Age 33, Insured.” But that seven-letter word did not happen without tumult, fear and repeated failed attempts to get some kind of health insurance when a life-altering diagnosis left Adrianne unable to work and find a job with health benefits after college.
Imagine punishing fatigue undermining your efforts to finish college and fulfill a lifelong dream to be a writer. We become undone if we take a subway car going in the wrong direction or get the flu and must take an unpaid week off from work.
How many breakdowns and restless nights would we have knowing we had a very serious physical problem preventing us from holding down a job, and no way to pay for tests, medicine and treatment?
If you live in Pennsylvania and you voted for Governor Tom Wolf in the 2014 gubernatorial election, you helped save Adrianne’s life.
One of Governor Wolf’s first actions after taking office was to fully implement the Affordable Care Act’s (ACA) federally funded expanded Medicaid provision. The new healthcare law bases Medicaid eligibility on income, a big change from states' more stringent rules
Gov. Wolf’s predecessor applied for and got a federal waiver to build Pennsylvania's version of Medicaid expansion. Critics claimed Gov. Corbett's Medicaid expansion plan created obstacles, delays and left too many low-income Pennsylvanians uninsured.
Soon after Gov. Wolf took office, Adrianne received a letter saying she was eligible for insurance after having been denied traditional Medicaid four times before.
The new expanded Medicaid that Gov. Wolf implemented after becoming governor allowed Adrianne to see specialists, get expensive tests and plot a treatment course.
Let me repeat. If you live in Pennsylvania, and you voted for Gov. Wolf, you helped save Adrianne’s life. YOUR VOTE MATTERS.
In states that did not expand their Medicaid programs, many uninsured thousands face uncertain futures portending grim health outcomes if they are very low or no wage earners. Kaiser Family Foundation reports. “Nationally, more than two million poor uninsured adults fall into the ‘coverage gap’ that results from state decisions not to expand Medicaid, meaning their income is above current Medicaid eligibility but below the lower limit for Marketplace premium tax credits. These individuals would be eligible for Medicaid had their state chosen to expand coverage.”
When I interviewed Adrianne she was articulate, gracious and sharp. But she told me she struggled. She said she “lost her edge” and was no longer capable of writing. Her mother suggested she dictate her stories and continue her writing that way. Adrianne is trying to piece together a life that somehow must accommodate a debilitating illness.
Adrianne’s portrait story draws a very straight line between policy and its effects on real people.
When I asked Adrianne to reflect on her experience, she said, “Don’t take your health for granted. I’m glad there are politicians and systems in place that help people when life gives them a bad deal. We must look out for each other and have gov’t to look out for people too. Being compassionate is being strong.”
Here is Adrianne's story.
Adrianne Gunter, College Graduate, Age 33, Insured
Adrianne puts it this way. “I’ve had jobs all over the place.”
In high school Adrianne worked at a convention center. Later she kept coffee brewing, tended to customers, and stocked shelves at a coffee shop. She cleaned house and wrote copy for a website.
As an office worker for a home heating oil company, Adrianne reconsidered her lifelong ambition to be a writer. She started writing at nine years old, wanted to be published at 14, got serious about it at 17. As a young adult in the working world, she decided to start saving money for college. She would pursue her dream to be a writer.
In September 2009 the University of the Arts in Philadelphia accepted Adrianne into their Writing for Film & TV program. The school would “prepare us so we could be employed. I LOVED it,” she said. She was 24 years old.
Adrianne made good grades until late into senior year. She started missing deadlines. “I couldn’t get out of bed.” She observed herself getting frustrated and angry for no apparent reason. She remembers chiding herself, “I need to pull it together.”
During the school week on Mondays and Tuesdays, Adrianne noticed she’d be fine, attend classes and keep up with the schoolwork. Fatigue would set in on Wednesdays and Thursdays. By Friday she was exhausted and unable to do her work. She missed a lot of Friday classes.
“Pull it together, Adrianne,” she’d admonished herself.
Adrianne was in her twenties. A serious illness was the last thing on her mind. She rationalized away her deteriorating health as a case of senior-itis. Graduation was weeks away.
Adrianne’s screenwriting teacher noticed something was wrong. “She said I did not seem as ‘sharp’ as usual.” Adrianne had vertigo and was out for a week. Her doctor prescribed valium and medicine for vertigo neither of which helped. She tried doing certain exercises to regain the ability to walk without the world spinning.
The doctor said he could order an MRI but he decided against it. Adrianne reflects. “I could have had an MRI while I was still on school insurance. But I trusted the doctor. I have since learned to be more proactive and insistent.” It turned out that an MRI would have been extremely helpful in diagnosing what was causing her deteriorating health.
Still, Adrianne managed to graduate. “Graduation was a wonderful day.”
Adrianne had plans after graduation. She wanted to go to graduate school. She got recommendations from teachers. She would take a year off, do an internship and study for the graduate school entrance exam.
By late senior year, Adrianne was losing all motivation to follow through on her plan. She was sleeping a lot. Tired all the time. A year passed, and she had done none of what she had planned. Her health worsened.
Adrianne carried health insurance as a student. The school required it and factored the cost into the tuition. She had an affordable co-pay. But school insurance ended in August following graduation. Adrianne found herself uninsured, very ill, and overwhelmed.
Adrianne burst into tears. She found it difficult to hold back her emotions. “This was very unlike me. I remember thinking ‘Stop this! What is wrong with me?’ “
Adrianne started to lose her vision. She went to an optometrist. She failed the field vision test. Her left eye was not focusing. She lost 85% of the vision in her left eye. On top of that insult, she had to pay $150 because she was uninsured. The optometrist sent her to an ophthalmologist. $200 for another test. The ophthalmologist sent her to a neuro-ophthalmologist. She failed the “resistance test.” Another $400.
Adrianne’s mother paid all her doctors’ bills because Adrianne had no insurance and no job. She was too old to be on her mother’s insurance policy. The Affordable Care Act, the healthcare reform law, mandated that adult children could stay on their parents’ policies until 26 years old. Adrianne was 28 at the time and too old to stay on her mother's policy.
Meanwhile Adrianne’s symptoms worsened. She had trouble doing her chores in a household that included her mother and sister. She did the food shopping and laundry. She had been cooking since she was 12. (Adrianne laughs. Her mom is a terrible cook. Adrianne was happy to take over the job.) Now she was too weak. She could not get the groceries and laundry from the front door up the stairs.
“What does this diagnosis mean!” Adrianne was stunned. She called her mom from the doctor's office lobby. She was silent. “Are you all right?” Her mom asked. “My mom took it one day at a time. She was handling it a lot better than I was.”
Adrianne needed an MRI but she had no health insurance and could not afford to pay for it herself. She was incapable of holding a job. She could not get traditional Medicaid, the insurance program for low-income people before the Affordable Care Act expanded it. The reason given, “not employed.” Non-disabled adults rarely qualified for traditional Medicaid. Adrianne was trying to figure out what was wrong with her.
Adrianne checked to see if she was eligible to buy insurance on the ACA health insurance marketplace, an online marketplace where individuals without job-based health insurance can shop for insurance from private insurance companies. She wasn't.
Adrianne was very sick. She could not hold down a job. She had zero income. An applicant needed an income to qualify for a subsidy, financial help buy insurance on the new ACA marketplaces. And she could not afford to pay full price for a health insurance policy.
The Medicaid expansion part of the ACA was supposed to give health insurance to people in Adrianne’s predicament -- those who did not qualify for subsidies to buy insurance on the ACA online marketplace, and also did not qualify for traditional Medicaid. (The Medicaid program before the ACA expanded it). Adrianne and the people in the hole between old Medicaid and ACA subsidized marketplace insurance fell into what has come to be known as the “Medicaid coverage gap."
The Affordable Care Act changed Medicaid eligibility rules to an income-based system . The new rules said that people like Adrianne with little or no income would be eligible for the newly expanded Medicaid insurance. But the US Supreme Court ruled that the federal government could not force states to expand their Medicaid programs. The ruling made Medicaid expansion optional for states.
The Republican governor at the time rejected Medicaid expansion in Pennsylvania. leaving Adrianne uninsured, sick, untreated and scared. She fell squarely in the coverage gap.
Adrianne put off getting the MRI her doctor ordered because she could not pay for it. She did not want to incur thousands in medical debt despite needing confirmation that she had Multiple Sclerosis.
“Medical debt is no joke. I remember very vividly being worried. Anything could happen. I did not want to be a burden. What about my future? Would I have to rely on my mother for the rest of my life? Am I ever going to get to grad school and become a writer/director? I did not want to dwell. It was too depressing, ‘I’ll be fine.’ I was in denial.”
Adrianne applied for her state's traditional Medicaid a second time. Denied. Adrianne’s mother applied for Medicaid and claimed Adrianne as a dependent. Denied. Her mother made too much money working as services coordinator at the convention bureau. Her mother then applied for traditional Medicaid coverage for Adrianne alone yet a second time. Denied.
Adrianne and her mom tried 4 times to get health insurance through Pennsylvania’s traditional Medicaid program. Then in 2015 the newly elected Democratic Governor Wolf expanded Pennsylvania’s Medicaid program as per the Affordable Care Act. This expanded definition of Medicaid covered Adrianne. Without even applying a 5th time, Adrianne was surprised when she got a letter notifying her that she had insurance. Finally.
Doctors could tell from the MRI that the lesions in the mid-brain were older indicating that Adrianne had had MS for a while. The lesions in the hind brain were newer. She had to get to a neurologist ASAP to start treatment.
Adrianne has no co-pay to see a doctor and a modest copay for some medications. She learned to inject herself with Copaxone, a drug to treat MS. The medication burned. She endured a year of self-injecting when two more lesions appeared on her spinal column. “I couldn’t take the burning injections anymore.”
Adrianne started a new medicine, Aubagio. The drug was ineffective. A new lesion the size of a thumb appeared on the left frontal cortex which affected her ability to write. She used to write 8-9 pages in 5-6 hours. Now she can barely write one paragraph a day. Her mom suggested she “speak” her stories. Adrianne started looking into speech-to-text software.
In 2018 Adrianne is trying to control MS with a drug called Ocrevus. The drug appears to be effective in slowing the disease’s progress. One year of Ocrevus consists of 2 infusions at a total cost of about $65,000. Adrianne’s health insurance covers the cost.
Incapable of holding a job, Adrianne applied for benefits under the Social Security Disability Insurance program. The Social Security office denied her first application because she was too young to qualify. A social worker advised her to appeal the decision. She did. In 2017 Adrianne went before a judge to tell her story. She had a full body tremor while facing the judge. The judge wanted to know if she drove a car. No. She does not stand in the shower. Her condition is not related to epilepsy.
Adrianne had to keep stress levels down and not let herself get frustrated in order to control the tremors. She was getting frustrated in front of the judge. The tremors took over. Eventually the judge ruled in Adrianne’s favor and she was able to receive Supplemental Security Income benefits, a modest monthly check.