Opinion | Disease took my brother. Our health-care system added to his ordeal. – The Washington Post

As a child, Pat could multiply three-digit numbers in his head, but social interactions mystified him and making friends did not come naturally. Our father was in the Air Force, and we moved almost every year; at each new school, the bullies quickly found him. Yet no one who knew him could ever remember seeing him angry or bitter. He assumed the best of people, no matter how many times they betrayed that trust; I don’t think he was capable of a mean-spirited act.

As an adult, Pat was proud and protective of his independence. But when he reached his early 50s, his health began to fail. My brother found himself up against not just disease but a broken medical system. Pat’s journey became a story of the best and worst of health care in this country, and it reveals the real-life consequences when health-care policy is treated like a football by two political parties.

None of which our family would have anticipated back in 2007, when Pat, who had always been fit, began having bouts of fatigue and a fluctuating appetite. Then came more alarming signs: His blood pressure crept up to 150/90; his urine turned brown and foamy.

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At the time, Pat was unemployed, having been laid off from his $9-an-hour position as an administrative assistant. That job hadn’t paid benefits; nor had the one before it. So he had bought a series of high-deductible, six-month medical insurance policies that promised “the peace of mind and health care access you need at a price you can afford.”

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A skimpy plan was indeed the only policy he could afford — and it turned out to be a big mistake. Though Pat had faithfully kept up the premium payments for more than six years, his insurer began denying his claims a few weeks after a biopsy in July 2008 showed his kidneys were failing.

The company, a subsidiary of Assurant Health, cited a technicality: Each successive six-month policy treated Pat as a new customer. In digging through Pat’s records, it noticed some abnormal bloodwork from the previous December, eight months earlier. Though at the time the test result was inconclusive, the insurer deemed it evidence that Pat had a “preexisting condition,” meaning his policy wouldn’t cover it.

At that point, Pat was facing more than $14,000 in bills from hospitals, doctors and labs — and those were just to figure out what was wrong with him. Dealing with his condition going forward was going to be unimaginably expensive; newer drugs that his specialist thought might help him the most could cost up to $10,000 a treatment; even the older ones could run $500 a month. “Cancel that policy,” the billing coordinator at the doctor’s office advised me. “Your brother is wasting his money on premiums, and he’s going to need it.”

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Suddenly stranded with no coverage at all, Pat had plenty of company in our home state of Texas, which, then as now, led the country in both the highest number and the highest percentage of its residents who are uninsured. (The rate was 18.4 percent in 2019, twice the national average.)

Texas’s Medicaid program — which the state has chosen not to expand, despite the incentives offered by the Affordable Care Act — is notoriously stingy; a non-disabled adult without children, such as Pat was, could not qualify if he earned more than $2,274 a year. The offerings of the state’s high-risk pool, for those who are hard to insure, was not only twice as expensive as a typical medical policy, but Pat would have had to wait a year to join with a preexisting condition.

Peter Smolens, his kidney doctor, assured us he would keep treating Pat even if he couldn’t pay — as Smolens did with 10 percent of his other patients. A social worker in his office made countless phone calls seeking forbearance from other providers. (One radiologist gave him a $22 hardship discount off a $626 tab, adding: “We are happy that we could be of assistance to you and your family in this time of need.”) Knowing that creditors could come after his one-bedroom condominium, his 2003 Saturn Ion and his $36,000 in savings, Pat began paying off bills in bits and pieces as best he could: $51.89 a month to one hospital, $76 to another, monthly installments of $4.78 to $111.89 on six different sets of laboratory charges.

I also did research into Assurant Health, and discovered regulators in Connecticut had imposed a record $2.1 million in penalties on two of its subsidiaries for allegedly engaging unfairly in a practice called “postclaims underwriting” — combing through short-term policyholders’ medical records, as they had with Pat’s, to find pretexts to deny their claims or rescind their coverage. We had canceled Pat’s useless policy, but I nonetheless lodged a complaint with the Texas Department of Insurance. In reply, Assurant maintained it had done nothing wrong, but it offered to cover the bills it had rejected the previous year — which it claimed was a gesture of beneficence that nodded to “the extraordinary circumstances involved.”

These practices were common at the time. Insurers argued they were necessary to prevent fraud — specifically, people buying policies only after they learned they are sick. That clearly was not the case with Pat, but that didn’t seem to matter in the case of Assurant’s decision not to cover his care.

One of the more popular provisions of the Affordable Care Act did away with insurance company exclusions for preexisting conditions. Barack Obama’s administration also significantly curtailed short-term plans, such as the junky one Pat naively bought, by prohibiting them from being purchased for more than three months. They were available as a stopgap for people who, say, were briefly between jobs. But for the longer term, the idea was to steer people toward the more comprehensive coverage offered on the ACA’s government-run insurance exchanges for those who do not receive insurance through their employer. As Pat’s experience showed, diagnosing and treating an unexpected illness is not something that can be wedged neatly into six-month increments.

After Donald Trump was elected, Republicans fell short in their efforts to repeal all of Obama’s signature legislative achievement, but they managed to undercut it where they could — including by issuing new regulations that allowed health insurance companies to once again sell short-term policies, renewable for up to three years. The policies were not required to cover preexisting conditions or offer a full array of benefits. Trump Health and Human Services Secretary Alex Azar conceded that short-term insurance “may not be the right choice for everybody,” but insisted, “we believe strongly in giving people options here.”

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Assurant Health, the parent company of Pat’s former insurer, meanwhile, got out of the business of selling individual health policies in 2016, after failing to find a buyer for that part of its operation. Its questionable business model was a casualty of the ACA. As Crain’s Chicago Business noted: “Regulators routinely found that Assurant Health failed to pay or unreasonably denied medical claims.”

As Pat’s medical bills mounted and his kidneys continued to fail, he managed to find a job answering queries that came into a text-messaging service, which paid $1,257 a month, but it didn’t offer health coverage. He was almost out of options when he discovered a county program available to low-income people. It operated much like a health maintenance organization, negotiating prices with health-care providers and then billing clients on a sliding scale according to income.

For Pat, it cost only about $40 a month. But the system was complicated, especially for someone with Asperger’s, and he often got confused navigating between his kidney specialist, who prescribed tests and medications, and the county program, which had to approve them. As Smolens, his doctor, told me: “The fact is, for guys like Pat, it requires a lot more work to do the same sorts of things” that would be easily dealt with if he had insurance. At one point, Pat had a bad reaction to steroids and was taken by ambulance to a hospital that was not a participant in the county program. The result — including a pile of bills and a short, unhappy stint for Pat in a group home — was a bureaucratic, emotional and financial nightmare.

While this was going on, I was living in D.C. and covering the ongoing national debate over health-care reform for Time magazine, even as I tried to help out as my brother’s long-distance case manager. I thought I was something of an expert on health-care policy; I had even moderated a presidential candidate forum on the issue in 2007.

But experiencing firsthand what so many other families were going through gave me a different understanding of the unending hurdles and real-life stakes that underlie the heated political battles raging around the subject. I wrote about Pat’s ordeal in a March 2009 cover story for Time that carried the headline “So You Think You’re Insured? (Think Again.)”

The January 2014 opening of the health insurance marketplaces created by the Affordable Care Act, though beset by technology glitches, was a godsend for Pat. Along with nearly three-quarters of a million other Texans, he signed up during the enrollment period; government subsidies made a “silver” plan affordable, and his options more flexible, though there were bumps from year to year as several companies dropped out of the marketplace.

But while he no longer had to worry about how to pay for his treatment, even the best care was not enough to hold back the progression of the kidney disease, a condition known as glomerulonephritis. By the end of 2016, he had end-stage renal disease, which meant he needed dialysis.

At this point, Pat encountered yet another paradox of the health-care system. End-stage renal disease is one of only two conditions that make people automatically eligible for Medicare, with no waiting period, regardless of their age. (Pat was 62.)

That meant he was already covered by Medicare and a supplemental policy eight months later, when another, even greater medical calamity struck: In early September 2017, Pat suddenly lost control of his car and crashed it. He was taken to an emergency room, where a scan revealed a baseball-size brain tumor. Surgery and a biopsy produced a diagnosis of Stage 4 glioblastoma; his doctors told me he could expect no more than a year to live. I scrambled to find him a new living situation, a comfortable apartment in Patriot Heights, a retirement community that also offered a separate skilled nursing care and was near the medical center where most of his specialists practiced.

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Pat was now caught: The fact that he was also undergoing dialysis made him ineligible for clinical trials that might have given him a better chance against the glioblastoma; that he had cancer meant he was no longer eligible to stay on the waiting list for a kidney transplant. My gentle, sweet brother accepted this new turn in his life as he had every other one, starting a regimen of radiation and chemotherapy without a trace of anger or despair. It helped enormously, however, that his Medicare coverage allowed all of us to concentrate on getting him what he needed, rather than worrying about how and whether he was going to pay for it.

For reasons the doctors couldn’t explain, Pat lived years longer than anyone thought possible. And he lived fully. He enjoyed raucous gatherings with our large extended family in San Antonio, and looked forward to visits from my brother Mike, who lives near Dallas. Pat’s new home was truly a community, one where he learned everyone’s life story and was greeted like the mayor when he entered the dining room. His fellow aging baby boomers were appreciative of his encyclopedic knowledge of ’60s and ’70s rock-and-roll.

The Patriot Heights staff was indulgent of — and more than a little amused by — his quirks and his routines; how he wanted four packets of honey with his coffee, his juice with and not before his meal, a serving of exactly eight grapes. Pat loved his Wednesday morning Bible study group, where he always volunteered to read aloud the epistle of the week, especially the ones by the apostle Paul, known for their comfort and righteousness. Physically, he was doing well enough to regain his driver’s license, which restored a measure of his independence.

But in late 2020, doctors told us that his cancer, which had been stable for more than two years, was coming back. Over the next year, Pat endured a second brain surgery; a craniotomy to relieve a subdural hematoma that he suffered in a fall; and another fall that broke his hip, which required a partial replacement. And yes, Pat also caught covid.

After many trips to the hospital and several stints in nursing care, he was able to return to his apartment but required 24-hour caregivers — something he was able to afford thanks to a modest inheritance from my parents and a bit of savings of his own. But he lost the ability to walk and began suffering small seizures, which required frequent trips to the emergency room. He also began losing track of people’s names, something that really bothered a man who had always been proud of his remarkable memory.

Medicare paid for nurses to visit, and on Feb. 7, one of them called me to say that Pat had told her something I never expected to hear from him: He wanted no more treatment, and wished to be placed in hospice care. She then put him on the phone, and he repeated his wishes to me.

The end for him came gently 10 days later. It was a gift to all of us that he made this decision himself, that he could determine when the medical care that had prolonged his life had begun to make it unbearable.

At his memorial service, the Rev. Linda Gwathmey, a Patriot Heights resident who had led Pat’s Bible study group, read from 2 Timothy 4:7, a passage where Paul, in prison and near death, writes that he has given God and his fledgling church his best effort.

“I think Patrick was a little like Paul here. He was tired, he was depleted, he knew death was approaching, and he thought it might be soon,” she said. “Patrick, like Paul, fought the good fight, finished the race and kept the faith.”

We will miss him every day, but we are left with the soft light of Pat’s spirit, which we had never seen more clearly than in those final, borrowed years of his life. Rest in peace, big brother.