This painting is from the art project, Art As Social Inquiry, the healthcare series. For each portrait story, I interview the subject, do an oil study, then paint the final portrait. The portrait and story appear on ASI’s online gallery. ASI’s portrait stories are a way for us to see how issues affect lives before we judge others, or hold fast to policies or ideologies that do not function in real world living.
Before the Affordable Care Act , Kerry could not afford to purchase insurance as a self-employed massage therapist and yoga teacher. Under Obamacare, Kerry qualified for subsidies based on her income. The Obamacare subsidies made insurance premiums and out-of-pocket expenses affordable.
With Trumpcare, subsidies are based on age. Kerry would receive a $3000 subsidy to purchase insurance no matter how low her income, or how much a policy cost. Trumpcare premiums could shoot up especially for middle-aged and older Americans.
Most likely, Kerry would have remained uninsured under Trumpcare, never having had that colonoscopy, and consequently dying from colon cancer. In a Trumpcare world, Kerry probably would have joined the thousands expected to die because Trumpcare health insurance would be unaffordable.
Here is Kerry healthcare story.
Artist’s Notes: What kind of health insurance system pushes an uninsured 40 year old, working woman to say, “I’ll stay pretty healthy until I’m on Medicare at 65.” A 25 year waiting period for healthcare security?
Before the Affordable Care Act, Kerry and many other uninsured adults coped with their uncertain healthcare futures by rationalizing away their fears.
One has to wonder what Kerry’s life would have been had she had proper insurance when she talked herself out of a recommended colonoscopy at 42. Five years later she was able to purchase insurance on the Affordable Care Act online marketplace. She finally got that colonoscopy, and found out that she had stage 3 colon cancer.
This portrait story raised a lot of questions for me. What does being uninsured and untreated really cost? In a life? For society? In Kerry’s case, it nearly cost her her life. She also lost the ability to work at her chosen career.
And what cost does society now bear for not having had a system that allowed Kerry to stay well and productive? Kerry expects to qualify for some form of medical assistance for the rest of her life.
Part-time Worker at a Coffee Shop, Insured, 49: As a part-time worker in a coffee shop, Kerry Orr makes breakfast, washes dishes, cleans tables, and makes sandwiches. “I am not a barista, but I do everything else.”
Part-time work is all that Kerry can do right now. She no longer has the stamina to continue her career as a massage therapist and yoga teacher. In her former career Kerry put aside money for taxes, paid her rent, and bills, but could not afford health insurance as a self-employed person. “I have never had a paid sick day, or a paid vacation, or any benefits such as health insurance.”
“I did all I could to stay healthy: eat well, exercise, get enough rest. I managed to pay out-of-pocket, or trade services on the rare occasions that I did need healthcare.” Nevertheless, Kerry admits to having always been terrified of being uninsured. She was paying out-of-pocket for a therapist to address a childhood trauma, but she had no safety net. And that scared her. “The only asset I had was my continuing ability to work.”
“I’ll stay pretty healthy until I’m on Medicare at 65.” A 25 year waiting period for healthcare security?
Before the Affordable Care Act’s insurance marketplaces opened in 2014, health insurance for self-employed people like Kerry often remained out of reach. She skipped routine check-ups, ill-advised for a woman in her forties entering middle age. When persistent bleeding pointed to colorectal issues, Kerry could no longer avoid paying a doctor. She paid $50 to see her primary care physician who promptly scheduled a colonoscopy.
Still uninsured, Kerry prepped for the colonoscopy and showed up at the surgeon’s office only to back out at the last minute. Being on the hook for the $1500 procedure gave her pause. “Could I really pay $1500?” She talked herself out of the colonoscopy. She had no family history of colon cancer, so why spend the money?
In 2014, the Affordable Care Act’s online marketplaces started. The new healthcare law requires that everyone carry health insurance (unless exempted) or pay a penalty.
In May 2014 Kerry purchased insurance through the Affordable Care Act’s online insurance marketplace called healthcare.gov. Her income qualified her for a subsidy to help her pay premiums she could not otherwise afford. “Once I was insured, I found an excellent primary care doctor, and finally started getting checked out for those aches and pains I had been living with for so long.”
In January 2015 Kerry finally got the colonoscopy she had put off five years earlier. She was 47 years old. She had experienced pain and occasional bleeding. “I expected the test to confirm that my symptoms were due to hemorrhoids.”
“As I was coming out of anesthesia, the doctor leaned down to tell me she had found a massive tumor that was going to need to be removed. I would need surgery. It was most likely to be cancer. This may seem hard to believe because most people consider a cancer diagnosis to be one of the scariest things imaginable, but I was so relieved to have health insurance, that my gratitude actually outweighed my fear. I didn’t know what was coming. I felt so fortunate I would be taken care of.”
Kerry’s early stage 3 cancer had just started to spread to her lymph nodes. The surgeon removed the tumor and part of her colon. She required six months of chemotherapy. “The chemo was hard for a few days, but I thought I would go back to work.”
Kerry had every side effect. She had “indescribable exhaustion.” “I was so hungry but did not have the energy to get out of bed.” Her fingers were numb and sensitive to cold. She gave up her rented house, and moved in with her mother. Her mother paid her ACA premiums while Kerry was going through treatment.
“I was so sick. I couldn’t work.” Kerry gave up her business still thinking she would go back to her massage therapy practice, and yoga instruction after chemo. But it was not to be.
Financial fears incapacitated Kerry just as much as the chemo did. Her income dropped to zero. The government denied her disability. The fatigue, back pain, PTSD, and catastrophic depression overpowered her. She eventually gave up the idea that she would go back to her massage therapy practice. The work was too physically demanding. “Recovering from cancer stopped my life.”
“If the Affordable Care Act had not been enacted when it was, I would likely now either be dying of undiagnosed, advanced stage cancer, or dead.” Kerry says that without the Affordable Care Act, she and her family would have suffered greatly. As it stands, she got the treatment she needed, and is in remission, all without incurring huge medical debts because she has health insurance.
Kerry gave up her career and works part-time at a coffee shop now. This is all her depleted health will permit. Her modest income qualifies her for the state’s Medicaid Expansion program, insurance for low income people enacted as part of the Affordable Care Act.
“My story is nothing short of a miracle. I am so grateful to the Obama administration.”
Kerry hopes to go back to school to “learn something new,” she says. “I do not have fear personally now. I was given a miracle when I needed it. I’m going to be OK.”