Covid-19 allowed for an experiment in US healthcare: what if doctor’s visits and hospitalizations didn’t cost people money? In response to the pandemic, major health insurers volunteered to cover coronavirus testing and treatment for their paying customers and the government introduced programs to make care more affordable. But a year after coronavirus was first identified in the US, those assurances haven’t played out as planned. A program to help the country’s 28.9 million uninsured has been riddled with problems, such as patients not knowing which healthcare providers are actually participating in the scheme. Undocumented immigrants have largely been excluded from aid. The complexities of long Covid, when people experience symptoms for months, have challenged patients and providers. And health insurers still control what gets covered and for how long. To better understand these disparities, the Guardian spoke to six people about the financial cost of Covid-19. Mellisa Arredondo Moncibaiz, 51, Texas: $633.32 Out-of-pocket costs: $572.32;. Premium: $61 (for one month) Mellisa Arredondo Moncibaiz’s financial stress is tangled up with grief. Six of her friends and relatives have died from Covid-19 – four of them in January. “It’s just horrible all around,” she said. The Wichita Falls, Texas, resident had Covid at the end of October and spent five days in the hospital, resulting in a $42,096 bill. The hospital billed for more than 200 different items – from an $11 zinc capsule to $1,080 for each day of heart monitoring. She is grateful her health insurance will pay most of the $42,096 bill, but she still has many sleepless nights thinking about her debts. The $572.32 she owes for her coronavirus treatment is on top of the $3,689.81 she owes the hospital because she broke her tailbone in June. “After insurance, it’s still $4,200, I don’t make enough to pay that,” said Moncibaiz, who works in housing. “I just pay what I can, $20 there, $10 there. But now, I haven’t been able to pay that because I am worried about rent, utilities.” To have health insurance, Moncibaiz pays a $61 premium each month – only a few insurers included premium relief in their Covid assistance. Her deductible, what people must pay before the insurance kicks in, is $2,550. After hitting that, insurance covers 80% of her medical costs. Moncibaiz said the debt is causing anxiety and depression, which she hasn’t sought treatment for because of its price tag. She called the $600 stimulus checks the government sent in January “a kick in the teeth”. The things which have helped the most, she said, are her understanding landlord and the national pause on federal student loan payments. “I am just working to keep my head above water,” she said. Baldhead Phillips, 51, Georgia: $100,000 Uninsured Atlanta-based comedian Baldhead Phillips was hospitalized with Covid-19 for two weeks in March, and each day watched as other patients were wheeled away on gurneys after succumbing to the illness. Doctors sent him home with an order to use $200-a-month oxygen therapy, prescriptions for 11 drugs and new diagnoses of high blood pressure and heart failure. “I got home, got the exhaustion, got into bed and the first and last thought in my mind was I just spent a lot of money to buy this stuff, and this is not a cure, it’s just to let me live a little longer and see how it’s going to go,” Phillips, 51, said. Two days later, Phillips received a $15,000 bill from the hospital. More bills followed and Phillips said they have so far totaled more than $100,000. Phillips doesn’t have insurance and is on the hook for the entire bill. He has been able to cover some of the costs with help from a GoFundMe online fundraiser and other contributions from fans and friends, but his income is a fraction of what it used to be. He hasn’t been able to work as a standup because of coronavirus restrictions and has stopped his second job as an Uber driver. “I’m so stressed out about that but at the same time my family is saying, don’t worry about bills, worry about getting better,” Phillips said. Last spring, Phillips was skeptical about the seriousness of Covid. Now, he uses his public platform to warn about how grave it can be. Phillips said: “I crack jokes for a living, but this is no joke at all.” Ellen, 66, Colorado: $1,600 Out-of-pocket costs: $100. Premiums: $1,500 (for 10 months) The government’s nationalized health insurance program for seniors, Medicare, has kept money at the back of Ellen’s mind while she struggles with long Covid. She pays $150 for the coverage each month and has spent less than $100 since she contracted Covid in April on prescription drugs. But Ellen, who asked not to use her last name for privacy, has had Covid symptoms for 10 months – including 128 days of nonstop headaches. “I still have fatigue, right now I am laying down in bed, a shower will wipe me out,” she said from her home in Littleton, Colorado. “I still have brain fog, after we have this talk, I will be exhausted.” The 66-year-old has seen a battery of specialists to address the lingering symptoms, and with Medicare, a government health plan for people 65 and older, the appointments are covered. Like most Medicare beneficiaries, Ellen has supplemental coverage which reduces costs of things like prescription drugs – she estimates she has spent under $100 on those since April. “It’s fantastic,” she said. Costs are higher for the 6 million Medicare beneficiaries who don’t have supplementary coverage to cover prescriptions, co-pays for doctors’ visits and other medical care. Adina Gerver, 41, New York City: $14,006 Out-of-pocket costs: $4,206. Premiums: $9,800 (11 months) Adina Gerver’s March Covid infection has left her with lingering symptoms including debilitating fatigue, a nerve system condition and a blood clot in her right lung. “I am earning very little right now, because I am working very little, because I am tired all the time,” said Gerver, who said she’s relying on financial help from family. The 41-year-old is being treated by specialists at the Mount Sinai Post Covid Care Center in New York City. She owes $279.87 of the center’s $3,900 bill for some of the treatments and tests she had in the autumn and she has yet to receive bills for all the care she’s received. Gerver has Cobra, a government program which allows people to continue with the insurance they had at their previous employer. Since August, she has paid $1,000 a month in premiums. Before that, her premiums were about $800. Separately, once she hits her $3,250 deductible, her plan pays for 100% of her medical expenses. Then there were the other costs, such as $20 for a pulse oximeter and spending more on ride-shares to get around the city. Friends and family also bought her a shower chair, bed desk and support pillow, which together are at least $100. Gerver suspects a government marketplace health insurance plan would cost less than Cobra, but she doesn’t know if the care she needs for long Covid would be covered. The process of navigating health coverage in the US can be frustrating and time-consuming at the best of times – when coupled with severe fatigue, it was too much. “I could not get it together to call them,” Gerver said. She was also too tired to fight a recent mystery bill - a month’s supply of the blood thinner she paid $35 for on 31 December, cost her $491.98 in January. Yaquelin Valencia, 29, California: $2,000 Out-of-pocket costs: $2,000. Premium: $0 (for one month) When Yaquelin Valencia had Covid in July, her biggest worry was how to continue supporting her undocumented family members, especially as the main provider for her parents. “I was concerned a little about my health, but I was more worried about my parents because I am their sole provider,” said Valencia, who lives in California’s Bay Area. The 29-year-old is a recipient of Daca, the temporary protection from deportation for people who were brought to the US as children without legal papers. Daca allowed her to collect unemployment when she was laid off in April and get health insurance when she got a new job in June as a community organizer in La Red, an immigrant rights campaign by the advocacy group Faith in Action. “I felt this sense of security that I know others don’t have because of status,” said Valencia. In the past, if Valencia needed to see a doctor, she would have to go to the hospital because she didn’t have insurance. She still owes hospitals thousands of dollars from the 18 years she didn’t have health insurance. Luckily, her Covid infection was mild. She saw a doctor online and treated her sore throat, fever, fatigue and loss of appetite with vitamins, sleep medication and other home remedies. She also spent extra money to stay in an Airbnb while her apartment was sanitized and to get food delivered for her and her parents, who she lives with,and are at high risk for severe Covid. She estimates that extra spending and medicine set her back $2,000. Catalina Morales, 29, Minnesota: $5,000 Out-of-pocket costs: $5,000 Catalina Morales has spent about $5,000 on Covid care, even though she never had it. Late last year, she and her sister traveled from Minnesota to Chicago to care for five close family members who had severe Covid-19 infections. This includes her mom and another sister, who were hospitalized for more than a week. Meanwhile, Morales’s brother-in-law battled Covid at home and took care of the couple’s two children, without paid sick leave because he is undocumented. To help cover the family’s rent and food, plus the sisters’ travel, Morales fundraised $5,000 by contacting people she knows. Morales, a Daca recipient and manager for the La Red immigrant rights campaign, said the fundraising was only possible because she is an activist and is familiar with the networks she could tap to get help. “Your regular undocumented immigrant doesn’t know or doesn’t have those relationships,” Morales said. “If I didn’t have that knowledge, my sister would not have paid her rent the last two months and my sister and I would have had to use credit cards to pay for all this.” Those initial costs aren’t the family’s only financial concern. Morales’s mother had been living in the US undocumented until she received a visa for victims of crime, but the paperwork is being processed. The hospital, therefore, doesn’t consider her a US resident, blocking her from qualifying for programs to help the uninsured. The family will owe the hospital the full bill, and plans to negotiate to pay in installments. The average charge for an uninsured Covid-19 patient’s hospitalization is $73,300, according to the not-for-profit insurance database Fair Health.