KANSAS CITY, Kan. (AP) — In a small back room of his Kansas City, Kansas, art studio, Michael Brantley pointed out a painting stretching across one wall.
It was a bird's-eye view of a man playing a trumpet that Brantley said was once part of a temporary exhibit at the American Jazz Museum. A potential big break.
"Then I ended up getting sick, and I can't do nothing with it," Brantley said one recent morning.
The last five years of Brantley's life have been an on-again, off-again battle with sarcoidosis, an inflammatory condition that has sapped his strength, caused his hands to tighten with arthritic pain and threatened to take his eyesight.
At the same time he's also been fighting with a fragmented health care system, alternating between trying to stay insured and trying to find someone who will treat him when he isn't insured.
Without treatments that he can't pay for without insurance, he will go blind. He is only 48.
When Brantley first got sick he didn't make enough money to qualify for subsidies to buy private insurance under the Affordable Care Act, the Kansas City Star reported. Then he upped his income and got insured. This year, he lost that coverage, until The Star started asking his insurer questions about why.
He got his coverage back recently, but only after missed treatments set back his health. His story shows that even with the ACA, one wrong move can still leave sick people without care, especially in states like Kansas and Missouri that have declined to expand Medicaid.
"There's no (safety) net," said Molly Moffett, who heads the Community Health Council of Wyandotte County's efforts to get people covered. "It is heartbreaking, because we have had people who had cancer and could not get treatment, because they had no insurance."
Moffett said she's hopeful that the Kansas Senate will expand Medicaid when it reconvenes in a few weeks. Conservative Republicans oppose it, saying that it would cost the state too much and that unless adults are on disability, they should not be eligible. But new Gov. Laura Kelly, a Democrat, has pushed hard for it, and the Kansas House of Representatives passed it last month with a bipartisan vote.
For Brantley, who doesn't get insurance through an employer and doesn't have steady income, it might be his best bet to not get stuck without coverage again.
'I couldn't see'
Brantley started noticing something was wrong in 2014. After a bout with the flu, he got what he thought was pink eye.
"Every morning, my eyes, it's almost like I had powder in them," he said. "Everything became white, I couldn't see, I was very sensitive to light."
Then the joint pain started. Brantley was uninsured, so he went to a charity clinic, Swope Health, but said the primary care doctor there couldn't figure out what was wrong with him. She wanted him to see a specialist, but it was hard to find anyone who would take him without coverage.
In dozens of other states he would have been eligible for Medicaid, because the ACA, extended that public health coverage to everyone who made 138% of the federal poverty line or less. But Kansas and Missouri are among states that opted out of that part of the law.
In Kansas and Missouri the program is restricted almost entirely to children, pregnant women, people who are elderly and frail and people with disabilities.
In those states, working people like Brantley can fall into a gap in coverage.
He wasn't making enough money to qualify for subsidies to purchase private insurance on the ACA exchange. The law's intention was for people with very low incomes to be on Medicaid, so the subsidies don't kick in until they reach a certain income — about $12,000 a year for a single person.
Brantley said he was looking at almost $1,000 a month in premiums — an impossible amount.
"I was in so much pain that just walking to the bathroom is something that was hard to do," Brantley said. "Thinking about painting was the last thing on my mind for that year before I was able to find these doctors and start getting treatment."
Another doctor at Swope guessed that he had some sort of auto-immune disease and prescribed a steroid. That helped stave off the symptoms enough that he could start working again.
But Brantley still didn't have a diagnosis. He found a specialist, William Godfrey at the University of Kansas Health System, who agreed to see him if he paid a discounted rate out of pocket for the office visits.
It was Godfrey and a colleague who finally figured out, after more than a year of symptoms, that Brantley had sarcoidosis in his lungs and lymph nodes. They tried to get him into patient assistance programs to help pay for his treatments, but he had to pay out of pocket for some, with drug prices that seemed to fluctuate wildly.
Brantley said one time he was told it would cost $60 to fill his prescription. He didn't have it, so he left, spent a few days gathering it and then returned, only to be told the price had doubled.
Brantley applied for disability with the federal Social Security Administration, which was his only real path to Medicaid in Kansas. It was a long and complex process that involved a lot of paperwork.
"I never even thought I would be in a situation like this," Brantley said. "I mean, my world is turned upside down. I don't know how any of these things work."
He was denied, which Moffett of the Community Health Council said is common.
"It's really difficult. I think on average people are denied three times," Moffett said. "And in the meantime, what do you do?"
Brantley did art. Lots of it.
He had been taking online classes for a business degree, but his grades plummeted when he fell ill. Rather than continuing to pay to re-take classes, he dropped out and threw himself into the studio. He had to think short-term, and his best short-term strategy was to try to sell enough art to qualify for subsidies for the next ACA open enrollment.
When he finally did qualify, it was a huge relief. For all of 2018 he had private health insurance. He could see most any doctor, and pay for most any treatment he needed, without delay.
"That was the biggest blessing in my life, having that insurance," Brantley said. "That was the best year, and the minute I lost it was the minute everything became difficult."
In trying to navigate the system, Brantley made some missteps along the way. But his insurance company said it did too.
There's no cure for sarcoidosis, and despite his treatments, Brantley's symptoms started flaring up again late last year. He said his KU doctors recommended a more aggressive course of action: chemotherapy.
Brantley was insured by a company called Ambetter at the time. He had signed up for the plan through a for-profit, online insurance broker.
In January, just as Brantley was getting ready to start his new treatments, something went wrong. His Ambetter insurance card was denied. He couldn't get the drugs.
Brantley said when he emailed his broker, she told him she had switched him to another insurer, Minnesota-based Medica, during ACA open enrollment, without telling him.
When Brantley retrieved the Medica mail he had been ignoring, he thought it said he still had time to pay his first premium and activate the coverage.
"I called different numbers and they said, 'Naw, we can't take the payments,'" Brantley said. "From then I haven't had insurance and I couldn't get the infusions done."
Brantley said he essentially gave up. He felt exhausted and beaten down by the health care system. He didn't know that Moffett's organization, located within 100 yards of his studio, could have tried to help. He didn't know that there is a state agency, the Kansas Insurance Department, which investigates consumer complaints about insurers. Almost 23% of adults in Wyandotte County are uninsured, and Brantley just figured he had joined their ranks again.
But one of his friends contacted The Star, and after talking to Brantley, The Star contacted Medica to ask what happened.
Later that same day, Brantley got a call from the company's headquarters, telling him his coverage would be restored, retroactively, if he paid his first three months premiums.
Medica spokesman Greg Bury said that Brantley missed what is called a "binder payment" — an initial proof that he had agreed to the plan the broker had purchased for him. But when he called and tried to pay, the company should have taken his money and started his coverage under what Bury said is an "unwritten policy" to be flexible with consumers at the beginning of the year, when many may be switching plans.
"Not sure what happened in his case that when he called he wasn't allowed to make that payment," Bury said. "But we have corrected that and apologized to him."
Holes in the system
Brantley said he was amazed at how quickly his situation changed.
But Moffett said his story still exposes holes in the system, some of which are getting wider.
Moffett said more people are using private insurance brokers since the Trump administration cut the budget for federally funded health care navigators, who helped people sign up on the official government health insurance website, healthcare.gov.
Moffett said brokers who work on commission, especially online ones who may be located far away, have less incentive to walk consumers through their new policies after making a sale than salaried navigators who are available for in-person appointments.
She also said that switching Brantley to a new insurance company could mean he has to switch doctors.
"I just can't believe that the broker would even do that without his knowledge," Moffett said, "especially if he's already getting treatment somewhere. Medica's network is very small."
For now, Brantley is focused on getting his treatments. He wants to work, because he needs to sell enough art to stay in the subsidized zone, and because he remembers when his illness almost stole his ability to work.
"The thing about it was, I gave up thinking like an artist," Brantley said. "I woke up and I looked outside and I couldn't see outside and everything was starting to fade away. I got so scared, I would actually try to practice walking around without sight, to know where to step. It got to that point."