The death of a 17-year-old and the shame of a healthcare system which wasn't built to work
Last week, a 17-year-old called William died on his way to the emergency room. He tested positive for Covid-19, the disease caused by the novel coronavirus. He was from the city of Lancaster in the Antelope Valley in California. These are the details we know for sure.
After that, things start to get more difficult. R Rex Parris, the mayor of Lancaster, appeared on a YouTube video on March 25, standing in front of a makeshift hospital populated with green army cots in what looked like a high school gym. “By now, most people have heard that we lost a 17-year-old boy,” he said. “There’s a lot of rumours going round about how he died and what the circumstances were, so I’d like to clarify a few things.” He was a healthy teen with no underlying health conditions, Parris continued. On the day he died, he had gone to an urgent care centre but was turned away because he didn’t have private health insurance and told to go to a public hospital. On his way to that public hospital, he went into cardiac arrest; six hours later, he died.
It’s a sad story, and it’s a believable story. It gained traction across the country and went viral on social media. But it wasn’t entirely true. Three days later, Parris updated his public Facebook page with further information: “We have learned more information about William’s death,” Parris wrote. “His family did have health insurance. When the family called [the urgent care centre] they were (correctly) told to take him to the emergency room. There was some initial confusion, possibly from language difficulties about the status of health insurance, but the family always had insurance. His family did everything possible to protect William, but this disease is fast and deadly.”
“All of us are frustrated about the lack of testing,” Parris added. “Los Angeles County Public Health decides on who gets tested. It is not the doctor, not the hospital, nor anyone else who makes the ultimate decision… The City of Lancaster has used city funds to purchase 25,000 gowns, masks, and test kits for Antelope Valley Hospital and local physicians. We decided to stop relying on other agencies for timely assistance. We hope to receive the first 25,000 test kits, masks, and gowns this week.”
“BYD [the automobile manufacturing company, which has a large factory in Lancaster] is also delivering 10,000 masks for first responders and Antelope Valley Hospital. These people are risking their lives every day without rudimentary protection.”
Parris signed off with: “Here is a picture of William. Pray for his family. God bless, Rex.” Accompanying those words was an image of a smiling young boy with soft features and spectacles standing in a school hall. He is wearing a Junior Reserve Officer Training Corps Airforce uniform, which is an extracurricular military program offered in schools across the US, including at Antelope Valley High School. A poster for the local youth football team, the West Lancaster Eagles, hangs in the background. William is clearly standing in a high school gym, its basketball hoop visible and a number of students in similar JROTC uniforms milling round in the background with their parents. It looks similar to the large makeshift hospital Mayor Parris was standing in during his YouTube video.
That day, multiple media outlets identified the boy as William Whang, a Korean American high school student, and his cause of death was reported as septic shock. “Heard from nurses that he did not die from the virus but from sepsis, I think it’s important to get the correct news out there,” a constituent called Kathryn wrote on Mayor Parris’s Facebook page, eliciting 55 “thumbs-up” reactions. “Most people who die from [the] virus die from septic shock,” Parris shot back, garnering 58 positive reactions of his own.
Parris is not entirely wrong: sepsis is known to be a complication of coronavirus. The fact that William Whang died of sepsis doesn’t mean that he didn’t die of Covid-19, just like a person whose heart stops after a long battle with cancer didn’t simply die because of cardiac arrest. A death is almost always more complicated than the singular event that happened hours before. Whang’s family were told to isolate, and his father has reportedly tested positive for the virus since — days after holding a well-attended funeral for his son. But Los Angeles County officials decided they wouldn’t include the death of William in their official death toll after all. They said the CDC would need to “investigate further”. And just like that, the mysterious death of a healthy child from the novel coronavirus was erased from California’s official narrative.
Mayor Parris never tried to hide his distaste for his higher-ups in charge of Los Angeles County. “We decided to stop relying on other agencies for timely assistance,” he said in that Facebook post on March 28. In his daily briefings to those in the Antelope Valley, he talks about getting supplies from local businesses and not relying on the county or the rest of the state. His measured frustration at the county seems analogous to the measured frustration New York governor Andrew Cuomo has displayed toward President Trump and the federal government, which still refuses to promise to deliver as many respirators as Cuomo says New York City needs. There’s one crucial difference, however: Los Angeles County leans Democratic, and Mayor R Rex Parris is a Republican. Regardless of political slant, American politicians are finding the system wanting during the pandemic, and duly turning on each other.
What would have happened if William Whang lived in a country with a national healthcare system? Perhaps he would not have waited until the day he died to seek help. Perhaps vital minutes would not have been wasted sorting out his insurance policy details while he sought medical assistance. Or perhaps he was simply unlucky, and nothing more could have been done. “I was rushed to the hospital half-dead in 2012,” wrote a commenter under Mayor Parris’s initial YouTube video about William’s death. “A guy was literally asking for my insurance while I was on a stretcher in the emergency room, barely able to open my eyes or speak… Luckily I was insured, or I wouldn’t be here.”
The problem with the American healthcare system is not just the obvious one — that many people do not have insurance at all, and will die or become chronically sick because they can’t access healthcare. The problem is the amount of time wasted; the statistics that slip through the cracks; the numbers which fail to be shared as details are passed from agency to agency and company to company. People with insurance still have to cover co-pays (the amount of money you split with your insurer each time you see a doctor) and deductibles (the amount you have to pay before your insurance kicks in, which is usually in the region of $5,000 per year). A trip to an urgent care centre like the one William Whang originally intended to go to usually costs $70 with insurance. His hospital treatment probably still cost his fully insured family thousands of dollars. America’s main debt helpful organisation notes that “even if you have excellent insurance coverage that pays 80 per cent of the total bill, the remaining 20 per cent can exceed $100,000 for major surgery.” More than 60 per cent of bankruptcies are filed in the US because of medical expenses — and a high proportion of those people already have insurance. Back when she was still running for president — and before she began “moderating” her stance on healthcare, much to the disappointment of many supporters — Elizabeth Warren credited her work with families who were filing for bankruptcy with converting her to the idea Medicare-for-All.
It’s the choices we are forced to make in a system where ill health means profit that matter more than the system itself. Can we afford two nights in the hospital rather than one? Should we wait it out and see if it gets worse? Should we fund research on that disease, when the best vaccine or treatment we know of might not turn that much of a profit and the lab closes without enough revenue? What if the pandemic is expected to pass in two years anyway? Can we buy some fish antibiotics on Amazon instead of seeing an expensive professional? Will it maybe be OK to take half the recommended medication from the pharmacy to cut the price? “I will never forget the time I had to amputate a patient's leg because he had to choose between insulin, food and housing,” a physician from New York wrote in a piece for The Independent last year. His patient had been conserving insulin for his diabetes in an effort to not fall further into debt.
When a person’s ill health makes your profit margins skyrocket, there’s little need to share data with other hospitals or agencies around. You bring the person in, treat them, charge them, move on. You advertise your hospital on billboards and television commercials. You tell people your hospital alone has the best outcomes for high-risk births, or stage four cancer, or rare genetic diseases in children. You hoard facts and figures, sometimes perhaps even forgetting the most inconvenient cases; you patent products. Information-sharing becomes completely antithetical to your culture. All those barriers you’ve put up are hard to tear down when a pandemic comes raging through, destroying everything in its path so quickly and efficiently that you have no choice but to start collaborating with your competitors. Except you have no blueprint for that collaboration, no details of who the best people to talk to are, no knowledge of which protective equipment or medical supplies those hospitals and urgent care centres already have in their possession. Suspicion breeds quickly; resentment festers. Are the people down the road secretly hoarding respirators? Are they taking more than their fair share of N95 face-masks? Are they overstating the problem? Are they fiddling the numbers, so it doesn’t make their record look bad? Are their death certificates accurate, or do they deliberately only tell part of the story? Do they want to avoid being responsible for the first coronavirus-related death of a previously healthy teen in Lancaster, California?
Antelope Valley Hospital, where William Whang died, is a public hospital. That doesn’t mean healthcare is free — you are still expected to pay, on your insurance or on a credit card — but it does mean that the hospital is funded by local government and legally obligated not to turn the uninsured away. AVH is the only nonprofit hospital in the area, and its costs are much lower than if you tried to access the same treatment at a privately owned and run hospital down the road, since it cuts deals with suppliers and pharmaceutical companies much like the UK’s NHS does. However, treatment and medicine will always be more expensive in the US, even at the more altruistically-minded establishments, because of how the system has artificially inflated pricing. The NHS, for instance, calculates that a doctor’s appointment costs the system around £30, or $37, per patient. A routine doctor’s appointment I made in New York last year (which cost me nothing, as I’m allowed one free checkup per year) was charged back to my insurance at a rate of $400. Even more alarmingly, a loophole in American patent law known as “evergreening” allows private pharmaceutical companies to make tiny, incremental improvements to such fundamental provisions as insulin every year so that it stays under patent in the US. Insulin, which was sold for just $1 when it was discovered in the 1920s by researchers who hoped its cheap price would allow it to be distributed far and wide according to need, now costs American diabetics an average of almost $400 per month. That can go up to $2,000 per month without insurance. In 2018, The Times complained that the NHS was paying $532 per person per year when the production costs for a year of treatment for the average type 1 diabetic is closer to $100. Such huge financial discrepancies would surely make those humanitarian-minded discoverers of insulin turn in their graves.
In a country where costs have been allowed to climb this high, is there any real prospect of bringing in nationalised healthcare? The problem with implementing a policy like Medicare-for-All is not so much convincing everyday Americans to get behind “socialism” (possibly an insurmountable obstacle in itself) as it is wrestling with the monster that has fed on unfettered capitalism year by year, and grown exponentially powerful as a result. The simple fact is that the US government will probably never be able to afford to buy its own healthcare system back off the people it sold it to. We’re at a tipping point for radical reform, and it’s looking increasingly likely that the answer to “Now or never?” will be “Never.”
When coronavirus first gripped the nation, President Trump promised in a press conference that people would be able to get treated for free if they caught it. A day later, he backtracked: people would be able to be tested for free, he said, but they’d still be charged for their treatment. It wasn't the government's choice to make, after all, about whether patients would be able to access comprehensive healthcare; it had been hard enough to get them to agree to that 30-second test. In some states like New York, large facilities have been made for people stricken by Covid-19 which combine the resources of private hospitals like Mount Sinai with local government funds and money from charitable organisations (in the case of the field hospital in Central Park, that’s a Christian aid NGO called Samaritan’s Purse.) But how much will the treatment and the potential stint in hospital potentially cost? As with almost any medical treatment in the US, the answer is: “It’s unclear; wait for the bill”. Some insurers have promised to waive out-of-pocket expenses. Others have said that they are considering lowering costs overall. But there’s still so much small print. Most insurance plans still only cover you at certain hospitals, and for certain types of treatment. If you’re tested and found to have something other than coronavirus — the flu, for instance, or pneumonia or bronchitis — you’ll pay big out-of-pocket expenses. And at least one person who works for a healthcare company told me they’d been laid off, along with a large amount of their peers, because the private hospital they worked for had been forced to start accepting patients without insurance so the company couldn’t afford to pay their (sizeable) salaries any longer. The house of cards which relies on this precarious, astronomically unfair system only needs a slight breeze to start tumbling down.
Outside all of this is William Whang, his isolating, grieving friends and family, and a community which still doesn’t understand why he died. Like when Trump didn’t want cruise ship the Grand Princess to dock on the west coast because “I don’t need to have the numbers double because of one ship that wasn’t our fault”, no one is incentivised to log his death. So why would they?
Americans are fond of saying that their political system, with its separate executive, judicial and legislative branches, has conflict “baked in”. It is supposed to be difficult to pass laws in the United States, because the Founding Fathers wanted to make damn sure their country would never again be dictated to by a monarch. When you bake conflict into healthcare, however, everything goes awry. Republican mayors turn against Democratic county officials; Democratic governors turn against Republican presidents; Republican presidents begin to stockpile medication, steal protective equipment bound for other nations, and ask US factories not to supply life-saving ventilators to neighbouring countries. People’s lives and deaths are forgotten as hospitals struggle to maintain their marketable statistics. City funds are used to buy medical supplies in a pandemic, because the federal government — even the state government — has no hope of accessing the data it would need to distribute supplies fairly. Some states lock down and invest in drive-through testing facilities; others deny they have any patients at all while their sick citizens are passed from one place to another, none of which wants to take responsibility for Patient Zero.
R Rex Parris continues his daily coronavirus updates. Today, he shared a picture of a rainbow in the Antelope Valley stretching out behind a campaign poster (“Re-elect our Rex”) on a rainy day, with the note: “I couldn’t help myself. I had to share this. Things will get better.” Things will, inevitably, get better — the pandemic will peak and then peter out, the death rates will go down, herd immunity will build up and vaccines and treatments will eventually be discovered. But after all of that has happened, William Whang — a teenager healthy enough to have joined the junior branch of the Airforce — will still have died. Answers will still be needed. And parents will still sit on the ends of their children’s beds or in the parking lots of hospitals across the Land of the Free, their sick children burning a fever and gasping for breath, wondering if they should wait it out just one more day, wondering what they can afford to do.
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