(Interview November 2020. Oil on canvas, 40 ins. x 30 ins.)
Missouri Supreme Court rules that voter-approved Medicaid must be expanded.
Aritst Note (2020)
Nika is a COVID 19 casualty. No, not because she his ill but because she lost her health benefits when she lost her job. On top of dealing with what all that means in terms of surviving the societal meltdown the pandemic has wrought, Nika has had to face being uninsured.
Nika had a job that provided health insurance benefits. Then COVID-19 struck. Nika left her job to minimize her exposure to the deadly virus and lost her health benefits in the process. Like 160 million Americans (pre-pandemic) Nika’s health benefits were linked to her employment.Lose one, very often you lose the other.
Nika’s wages fell below poverty level. She became an uninsured low-wage earner working at another job. Even with extremely low wages she did not qualify for any safety net health programs in Missouri, her home state.
Confusion about how to insure low-income people arose with a June 2012 US Supreme Court ruling. The new healthcare law, the Affordable Care Act (Obamacare) said that states had to expand their Medicaid programs to insure low-wage workers, and the law allocated federal dollars for the states to do it.
While the 2012 Supreme Court ruling said the Affordable Care Act is constitutional, it voided the part of the law that made Medicaid expansion mandatory. Medicaid is a state/federal health program. The Court ruled that the federal government cannot force states to expand their Medicaid programs as the new healthcare law dictated.
Without expanded Medicaid, red states like Missouri tore a giant hole in the Affordable Care Act’s safety net. Medicaid expansion was supposed to give low-wage workers like Nika a pathway to health insurance. Instead, these very low-wage earners fell through the safety net’s hole.
Republican red states’ negligence in walking away from federal funding amounting to billions to expand their Medicaid programs is akin to pushing Nika and other low-income people into a canyon and then ignoring their pleas – pleas that echo in every red state legislative body that did not expand Medicaid to help their people.
Luck is the only thing keeping uninsured Nika and 2 million others in similar circumstances from crashing to the canyon’s bottom where major medical events litter the canyon’s floor with ruined health, wrecked finances and broken spirits.
One big medical event and Nika knew she’d go bankrupt and lose everything if she remained uninsured. Nika knew very well that on top of financial ruin, she’d still have to face the medical problem that could bury her in the first place. A few years ago, Nika experienced a very serious major medical event while she was insured. She remembers thinking that she would have been ruined without health insurance.
Republican pushback to the Affordable Care Act was strong in the years after the law’s passage in 2010. Many conservative state governors chose not to expand their Medicaid programs. Later, when Republicans held the White House, House of Representatives, and Senate in 2017 they still could not garner enough votes to repeal Obamacare, a label former President Obama likes.
By 2017 Obamacare polls showed a majority in favor of keeping and improving the healthcare law rather than repealing it. But there were some holdout conservative governors who refused to expand their Medicaid programs despite the law’s growing popularity.
This portrait story puts in real-life terms the havoc and stress lawmakers offload onto constituents because of their politics especially during a national crisis like the COVID-19 pandemic. If Missouri had expanded their Medicaid program as stipulated in the Affordable Care Act, but made optional by the US Supreme Court, Nika would have continued to be insured while facing the travails of living through a pandemic.
A welcome footnote but not in time for Nika. In the August 2020 primary elections, Missouri residents overrode their Republican governor’s objections and voted to approve a constitutional amendment to expand their state’s Medicaid program. Coverage should be available by mid-2021. There are 230,000 Missourians who will be eligible for Medicaid when Missouri expands the program in 2021.
Nika is a remarkable human being for summoning the courage to reinvent herself especially during a pandemic. As her story shows, her response to her circumstances is impressive. But shouldn’t that exceptionalism be spent on realizing her vision for a productive and meaningful life and not stressing about how to get health insurance that would save her life and her finances if she got sick?
In the end, Nika found a way to get health insurance after many months of being uninsured because she was too afraid to be without it. Her portrait story below explains how.
Why do our citizens have to be superhuman doers and thinkers and struggle to build their own ladders out of ditches that politicians create?
We ask too much of our citizenry, those without good health insurance. Even having insurance does not protect one from a quiet desperation that infiltrates American life.
To be sick and HAVE private health insurance often means entering a maze of pre-approvals, denied claims, surprise bills, dubious billing, indecipherable pricing, and a whole lot of stress wondering how much the out-of-pocket costs will be, and even if the policy covers the sickness at all?
But to be sick and UNINSURED means one has to grovel for specialty care beyond what free clinics provide. It means putting off checkups and treatment for banal pre-disease conditions before they turn into full blown diseases.
Lack of fair, comprehensive, affordable access to healthcare for everybody is killing us. Those who must use their private insurance are stressed out. Those without insurance live with a continuous buzz playing in the back of their minds, always reminding themselves not to get sick or hurt because then what?
In 2012 I demonstrated in front of the US Supreme Court in Washington D.C. I held up a sign that said, “Tell me what the uninsured did wrong and I’ll go home.” I still mean it in 2021.
All citizens not having affordable access to good, comprehensive healthcare is our national disgrace. How can we be expected to live, work, contribute, and maybe even add a little something to the nation’s joy quotient if our health system injects quiet desperation into our daily lives. We’ve lived with being uninsured and our onerous private health insurance/healthcare system for so long that tiptoeing around lives to avoid its abuses defines what it means to be American.
We. Must. Change.
Tea Shop Owner, Uninsured then Insured, Age 34
As of this writing there have been approximately 27 million COVID cases and 465,000 COVID deaths in the US. Unemployment is high and 24 million adults reported that they did not have enough food to put on the table.
Our lives are being rearranged in sometimes big, catastrophic ways like not being able to pay rent and buy groceries. And sometimes in big, uncertain other ways like our lives moving in new, unexpected directions that require us to take risks we would not otherwise take.
Nika falls into the second group. During the COVID pandemic, Nika lost her job, her health insurance, and opened a tea shop. Yes, a tea shop in the middle of a pandemic, a development she did not see coming.
“Community organizing is my passion. And I love tea.” These two loves are a big part of the music that makes Nika’s soul sing.
Not everything that happens during a pandemic is tragic. Serendipity can take the musical score of a life and deliver an unexpected and new arrangement while the world is upside down. This happened to Nika.
Before the 2020 pandemic, Nika worked at a non-profit as an advocate for low-wage earners and the homeless – no surprise since advocacy is in her blood. At the start of the pandemic, Nika lost her job and with it her health benefits.
Enter a plot twist in Nika’s life’s script. Five months into the pandemic, Nika became the owner of a tea shop called Soulcentricitea, a dream come, for sure, but tempered by all the ups and downs that new small business owners face. Throw a pandemic into the mix – one that has crippled and closed thousands of businesses -- and the challenges are magnified.
Nika works 7 days a week at her 1000 sq ft tea shop. Selling tea is a calling for Nika but her new business owner wages were erratic and meager. Nika managed except for paying health insurance premiums for herself and her children. Nika’s kids were on her health insurance plan at her former job. When Nika lost her job and health benefits, her children also became uninsured.
It took time, but Nika was able to get Medicaid coverage for her son and daughter based on her low income. However, she had no way of getting coverage for herself. Low income alone does not qualify a Missouri adult for health benefits under the state’s traditional or “old” Medicaid program. The blind, disabled, aged, and pregnant women have a much better chance of qualifying for benefits. But as an able adult, Nika said she would have had to make less than $381/month to be eligible for traditional Medicaid in Missouri.
Nika also did not earn enough to make her eligible for subsidies that would help her buy health insurance on the Affordable Care Act’s online marketplace. Healthcare.gov is the federal online exchange where the uninsured can buy health insurance, often qualifying for financial help. (Some states created their own state-run exchanges that serve their populations similarly.)
As counterintuitive as that sounds -- the very lowest wage earners not being able to get financial help on the online marketplaces -- it makes sense when one considers that these workers were supposed to become eligible for insurance in their states’ expanded Medicaid programs. And that is exactly how it works in states that expanded Medicaid.
But in reds states like Missouri that did not expand Medicaid, the uninsured low wage worker could not choose another option by jumping onto the online marketplace where she could get a subsidy to help pay her insurance premium. The healthcare law set parameters based on income. The law does not allow one group that was supposed to go into the expanded Medicaid lane to jump into the subsidy marketplace insurance lane if they want to get financial help paying premiums. (Anybody can pay full price and buy insurance on the online exchanges, but that’s a ridiculous notion for somebody making below federal poverty level wages.)
That missing middle lane between a state’s old, unexpanded, traditional Medicaid program and the new online insurance marketplaces is called the Medicaid “coverage gap.”Without Medicaid expansion, the very low wage worker has no lane to jump into to get health insurance.
The law’s framers never expected the Supreme Court to rule that Medicaid expansion is optional for states, leaving millions without a way to get health insurance. The law’s architects would have addressed the glitch when they wrote the legislation if they had had a crystal ball predicting the Supreme Court’s decision to strike down a major leg of the law mandating that states must expand their Medicaid programs. The Affordable Care Act was meant to insure as many people as possible, not make people’s lives harder.
Nika knew she would lose her insurance when she left her job. But her job put her in close contact with an at-risk population for COVID. These rival tensions weighed heavily on her.
Advocating for low-wage earners and the homeless at a non-profit was not a job Nika could do remotely. She tried to work from home, but the nature of the work didn’t permit it. “It was really difficult to get my clients the things that they needed.”
A lot of Nika’s clients didn’t have phones. They were depending on her having office hours. “The clients were waiting to hear back from me about public housing. They depended on me having office hours. They really had needs I could not meet. They needed a case manager who could see them.”
Nika had to resign because she felt she was not able to help her clients and do her job. The organization tried to work with her. But remote work was not working out. Nika’s fulltime job ended along with her health benefits.
Nika’s self-talk about the prospects of being uninsured are familiar to anyone who has ever had to do it. “I navigated without health insurance before. I could get treatment at a clinic that charged on a sliding scale. I could get physicals and well-woman visits.”
But with age stuff happens. When Nika had insurance, she had a major medical event. “I had really low iron. It was the first time I really needed any medical intervention.”
Nika got an IV for iron and almost needed a blood transfusion. “This was scary. It was the first time in my life that I really needed healthcare. I don’t know if it would have even been possible for me to get the clinic that did the iron infusions to do sliding scale. That would have been a lot of debt for me.”
Nika loves tea. “I’ve been into tea since high school when I could buy my own tea. People always gave me tea. They knew I was a little bit of a fanatic.” Nika always toyed with the idea of a tea shop. She went as far as inquiring about retail space at a repurposed bread factory before the pandemic. With what money? Well, where love of tea is involved, it did not hurt to ask.
Nika was not new to entrepreneurship. In 2018 she started a collective. Friends brought their goods to a 500 sq. ft. space. “We all sold our stuff out of the shop. I had my loose-leaf tea. A friend made candles. Another made incense. Anything we could think of that had to do with self-care.“ After about a year, the friends branched off and did their own thing. “A lot of us were single moms. There was a lot of support that happened in that atmosphere. The co-op taught me a lot about business. I got an accountant. At the tea shop I can go further. I can build a brand.”
When the pandemic struck, the owner of the factory retail space reached out to Nika. Did she still want to open a tea shop? A coffee shop in the building was closing and did she want the space?
Nika said no at first. “There’s a pandemic,” she said. The landlord made a deal. A 1-year lease and a pandemic clause. And, as the saying goes, the landlord made an offer Nika could not refuse. “I am working 7 days a week. He knows I am working hard.”
Nika had $6,800 in savings and a little help from friends. “What I didn’t have in money, I made up for in community support. There were so many people ready to help.”
Soulcentricitea, Nika’s tea shop, was born. “Tea is another modality for me. It’s medicinal. It’s very calming. I try to create an atmosphere in my tea shop that is calming and relaxing. The most common ailments people have – there’s a tea for that.”
COVID-19 threw Nika a curve ball. She caught it and threw back a reinvention of herself as a tea shop owner. But being uninsured still haunted her. “I wanted to have health insurance so I’m not so nervous.”
Nika put out the word that she needed additional employment. She has a long history of community outreach and development. She relied on that network to open up part-time employment opportunities and it did.
Nika got a part-time job as a housing specialist to fill in until the organization fills the director position. “They have a grant for some programming and they really needed somebody to help solidify, strategize, and design these programs.”
With the $23/hour part-time work, Nika bumped up her tea shop wages enough to where she can buy insurance on the Affordable Care Act’s online marketplace and qualify for a subsidy.
Nika’s prior gross income put her in the Medicaid coverage gap between her state’s old Medicaid rules, and the Affordable Care Act marketplace rules because her home state did not expand the program that could help her. Her new gross wage qualifies her for financial help, an absolutely necessity for Nika to be able to afford the $275/month, her portion of the premium.
If Missouri had expanded Medicaid when Nika opened her tea shop, she would not have to work a part-time job in addition to working 7 days a week at her tea shop. When asked if she would dedicate herself full time to her business if she did not have to take on part-time work for the health insurance, Nika responds with an emphatic, “Oh, yes, definitely!”
Nika hopes that business will pick up in time. She expects her income at the tea shop to increase enough to allow her to continue to meet the Affordable Care Act marketplace subsidy rules without having to work two jobs.
At the end of interviews, I always ask my subjects if there is anything they would like to say and would they like to comment on healthcare. Here is what Nika had to say.
“Healthcare is a human right. It’s not negotiable. It’s not a political issue. Even the healthcare plans or Medicaid Expansion or the Affordable Care Act – which is very new—is a like a drop in the bucket. If you look at other countries, they’re taking much better care of their people.
“You can have it; you cannot have it (healthcare). The government doesn’t really care. We’re seeing the effects of that. Now we’re seeing the rural hospitals underfunded. This pandemic is shedding light on the fact that healthcare is a human right. Not only that, but it’s also a global interest for everybody in the world to have good healthcare because when somebody gets sick in China, it affects us.
“There are so many other people like me working full time. My sister works as a certified nurse’s assistant in Nevada. She won’t come home. They have really good comprehensive healthcare. They have Medicaid expansion. In Missouri, she couldn’t get insurance from employers. She has a chronic health condition. Families are making choices to live apart for healthcare.”