Kirstyn and Mark Livingston have devoted their lives to treating patients. Now they’re experiencing some of the biggest burdens of the American health care system from the other side.
Mark, 50, is a family physician and Kirstyn, 41, is a psychologist on St. Thomas, one of the U.S. Virgin Islands. The couple has two children, 11-year-old Maya and 10-year-old Owen. The last two years have been devastating for the entire family. Hurricanes Irma and Maria destroyed their home in September 2017. Two months later, Mark needed emergency heart surgery while the family was visiting Iowa.
Mark underwent a second heart surgery in Dallas in February 2019, and while it was successful in treating his heart condition, he suffered a stroke during the procedure. Mark had to spend time in the intensive care unit and was later moved to a special hospital. He’ll need months, at least, of rehabilitation to regain his physical and mental capabilities. His family has returned to St. Thomas, but because the island lacks adequate medical facilities to treat his conditions, he stayed behind in Texas.
Now the family is dealing with the high costs of saving Mark’s life and confusion about what their health insurance policy will actually cover.
“We know we have this crippling, potentially financially devastating debt coming at us, and I have no idea what it is,” said Kirstyn. “I don’t even know if it’s something we can tackle and fight, or is it something that’s going to just take us down.”
This is why the Livingston family turned to crowdfunding website GoFundMe, where they’ve raised nearly $130,000 since March. That’s a lot of money ― but it still might not be enough to protect them from financial ruin. Mark hasn’t worked in months and may never resume practicing medicine. And Kirstyn has missed many weeks of work while she looks after the kids, oversees reconstruction of their home and travels back and forth to Dallas to see Mark.
This system is difficult even for doctors and other health care professionals to navigate. Anyone’s health can fail and expenses can spiral out of control. Knowing the right thing to do is close to impossible in urgent circumstances, such as Mark’s surgeries and his stroke. In these moments, families are focused on saving the life of someone they love. Afterward, they must reckon with the price tag.
The bills are only now starting to trickle in, and only amount to a few hundred dollars so far. But they know there’s a lot more coming: major heart surgery, weeks in the ICU and months of rehabilitation are incredibly expensive.
Their health insurance provider has already refused to cover the residential neurotherapy rehabilitation services his doctors initially said he needed, Kirstyn said. His doctors decided that outpatient therapy would be acceptable, but the insurance won’t cover that either, so the family is paying for it out of pocket.
But Mark would benefit from the help of home health aides going forward, which insurance doesn’t cover. They’re relying on family and friends to help him with basic activities like bathing and dressing.
The Livingstons have had to deal with health care systems across multiple continents.
In 2017, the family couldn’t find an insurance provider on the Virgin Islands to cover them, partly due to the fact that central elements of the Affordable Care Act ― such as its prohibition against refusing to cover people with preexisting conditions ― don’t apply to U.S. territories. And there are no health insurance exchanges for individuals or small businesses in the territories.
So they turned to a British company that sells medical insurance to expatriates around the world. This British insurance carrier refused to cover the claims for Mark’s first heart surgery, which left the family about $150,000 in debt to the hospital. Those bills have gone to collections. That’s hurt the family’s credit score, which will hamper their ability to borrow money to cover additional medical costs.
The family was able to enroll in a health policy from a major U.S. insurance company in 2018, at a cost of $2,700 a month ― but it’s still unclear what exactly that insurance is going to cover.
There’s a certain dark irony in Mark Livingston getting caught up in the worst parts of the health care system. As a physician, he has a reputation for devoting extra attention to his patients, Kirstyn said.
“One of the reasons people like him as a doctor is because he doesn’t fit the way that modern medicine has become,” Kirstyn said. “One of the issues that he’s had in his practices in the past is that he spends too much time with his patients. You know, he’s always getting hassled by administration that he needs to see more people and move through his visits.”
The Livingstons have had better luck with their homeowners insurance, which agreed to pay for most of the rebuilding of their home, and a federal disaster loan should cover the remainder. Kirstyn hopes the family can move out of the camper they’ve been living in since February 2018 and back into their home by September.
Mark’s prognosis remains highly uncertain. He can’t walk and is currently using a wheelchair. He can’t use the left side of his body and has difficulty seeing out of his left eye. He has trouble remembering things, and he sometimes mixes up words.
“He’s not going to be 100%. He just won’t be,” said Kirstyn. “But we don’t know how close he’ll get.”
One bright spot has been seeing their community rally around the family, Kirstyn said. Only about 50,000 people live on St. Thomas, and the Livingstons have developed deep connections. Mark provides free medical care at a homeless shelter, and the family is active in the St. Thomas Reformed Church.
“It’s been brought home in stark reality to me how important social support is, whether it’s from close friends and my family members or whether it’s the random person I don’t even know who stops me in the grocery store,” said Kirstyn.
The money raised on GoFundMe has given the family some “breathing room,” Kirstyn said. “We were so depleted at the beginning of this because of everything else that our safety net was just gone.” So far, she’s mostly been using that money to keep up the mortgage payments on their house.
But Kirstyn has no idea how long that money will last. They still owe about $150,000 for the previous heart procedure, eventually will have to repay their disaster loan, and their income will be substantially lower for the foreseeable future.
Naturally, this has hit Maya and Owen the hardest, Kirstyn said. “Watching my children go through this has been excruciating,” she said.
“My son was worried about money. Like, ‘Are we going to end up on the streets?’” Kirstyn said. While she tried to assure him they’d be OK, she knew she didn’t have answers that would eliminate his fears, she said.
“It’s really shaken their sense of what they can count on, their sense of stability,” Kirstyn said.
Visiting Mark in the hospital was tough for the children. “With these cognitive issues that are part of the stroke, he’s different. He’s different to talk to, he sounds different, he relates differently,” Kirstyn said. “They’re grieving the dad who went into that surgery and they are coming to terms with who he is now and how he is now.”
Kirstyn has also found herself without her main source of support. “I’m making all these decisions and trying to do all this stuff and process all this, and my number one, go-to person, my partner and my best friend, is not available,” she said. “That piece of it has been very difficult.”
CORRECTION: An earlier version of this story misstated what type of neurotherapy rehabilitation services Mark Livingston is receiving and incorrectly stated that his health insurance was covering that expense. Also, the headline on an earlier version of this story incorrectly indicated that Kirstyn Livingston has a doctorate.
