Crowdfunding doesn’t patch all gaps in health care safety net

LANDER — No one may ever know where the spark came from before it silently ignited the front porch of the cabin. Nothing seemed out of place until the fire exploded through the front door as Noelle Weimann van Dijk and Feike van Dijk were feeding their children.

In a few short minutes two of their five children were dead, their house destroyed, and their lives upended.

The incredible heat of the fire flash-burned Feike, a Dutch immigrant, as he opened the front door to see where the smoke was coming from. While rushing from the house his 8-month-old son Ephraim’s hair and scalp ignited, causing life-threatening burns.

Noelle rescued Ephraim’s twin sister Sabine, and their oldest son Able ran out of the house on his own. By then, no one could get back in the house to save their 2-year-old Noah and their 4-year-old Zephan. Both died in the fire.

“You got a foot near the door and your nose and ears started melting,” Noelle said. “It was insanity, and to know we couldn’t save our kids was the fastest most horrifying and gruesome process I’ve ever been through in my life.”

Both the father and the infant were rushed to Lander Regional Hospital, then put on a life flight to a burn treatment center at the University of Utah. At that point, the sudden fire turned into a long crisis of medical treatments, grieving, and astounding medical bills.

The biggest was the life flight bill, which topped $100,000. The costs of losing the house and the multiple surgeries and procedures quickly piled up, totaling $500,000. The van Dijks asked for help from their family and their community, setting up an online GoFundMe campaign, a blog, and a website. Over the next year, donors gave tens of thousands of dollars to the family, both through GoFundMe and in accounts that community members set up at local banks.

“Those [bank accounts] were done without any initiation from us, and my husband and I were very surprised,” she said.  

The funds aided greatly, helping the family pay $70,000 in bills, while the grieving process rendered them unable to pursue their careers as social workers. Eventually the family got back on its feet, purchasing Global Arts, a gallery and consignment store on Lander’s Main Street.

“It really is a sink-or-swim thing, and the more people that can selflessly love you the more chances you have of swimming,” Noelle said.

Community fundraising campaigns have long been a fixture of life in Wyoming towns. In decades past families would hold benefit events, or put donation jars on the counters of local businesses.

Today some of that activity has moved to the Internet, making it easier to spread the word and donate with just a few clicks.

Wyoming’s GoFundMe campaigns for medical expenses paint a picture of individuals and families struggling to face unexpected circumstances. They tell of children fighting serious diseases, or people getting pieced back together after work accidents or car and motorcycle crashes. Perhaps the most common reason for a campaign is cancer.

Reaching out for help

Taken together, online crowdfunding campaigns in Wyoming hint at the complicated financial situations and patchwork payment systems that arise from America’s medical system. These range from safety nets like traditional health insurance, Medicare, and Medicaid, to charity care and uncompensated care from hospitals.

Some Wyoming families have the funds to pay out-of-pocket, which can drain retirement accounts. Bankruptcy is also an option.

Medicaid, Medicare, and insurance programs all have complicated eligibility rules and varying levels of benefits. Individuals sometimes lose coverage because medical crises forces them out of work, or life circumstances change.

In the case of the van Dijks, both had left their jobs at a long-term nursing facility in Riverton just a few months before the fire. Noelle, pregnant with twins, made the decision to stay at home and care for the children. Feike got a new job at a clinic on the Wind River Reservation weeks before the tragedy.

Feike’s new health insurance had not kicked in when he and his son arrived at the burn center in Utah. With the help of COBRA insurance to bridge his old and new employers’ policies, he was able to get coverage for himself and Noelle for the next eight months following the tragedy.

They enrolled their burned infant Ephraim in Medicaid coverage two weeks after the accident, and the University of Utah teaching hospital absorbed their son’s costs up to that point as charity care.

Filling out the paperwork and sifting through the details of applying for coverage was a major task, something that was only possible through the assistance of a friend from their former workplace. “If we hadn’t had people advocating for us in the process of it … I can’t even imagine,” Noelle said.

The trauma of losing his children made Feike unable to begin working his new job, which involved providing emotional support to clients. He was granted medical leave, but was soon laid off. Noelle, also a social worker, was similarly unable to work in the aftermath.

“There was no way we could do anything except have the bare emotion to cry ourselves to sleep,” Noelle said. It took eight months before the grief started to lift, and she began thinking about tomorrow and resuming work.

“It was this nucleus of pain,” she said. “There was just so much loss and devastation …. and when you add finances on it, you can understand how people go crazy.”

The van Dijks received a lot of financial and emotional support from their community and their church, particularly from others who had survived terrible losses.

“People here really broke for us, and I don’t know how much of that was our influence in their lives, or the fact that it was just inconceivable what took place,” she said.  

The outpouring helped them find a new house and restart their lives with the new entrepreneurial venture that now carries the family. Owning the small business makes them eligible for inexpensive policies under the Affordable Care Act.

“The fact that we had the [ACA] incentive with the small business helps out hugely,” Noelle said.

They also knew they needed the help of psychiatrists and counselors to get back on their feet. “The emotional health requires as much professional help as a broken hip,” Noelle said.

Not all GoFundMe campaigns weigh on the community conscience equally. Others in Wyoming aren’t always able to muster such a response to medical crises. It can be more challenging to raise funds for an adult than for a child. The van Dijks recently set up a GoFundMe campaign to help a neighbor with cancer, but it hasn’t received nearly the level of support.

“I don’t think people normally get the assistance at the extreme amount that we did, unfortunately,” Noelle said. “People couldn’t deal with dead kids that suffered through burning. I don’t know how much worse it can get. That image alone prompted people to help in ways I hadn’t seen before in advocating for people and myself.”

It helps to have friends

GoFundMe works best for people who already have a large network and know-how to muster crowdfunding tools of the Internet to their advantage.

Some Wyoming GoFundMe campaigns raise only a few hundred dollars, far short of what might be needed. Crowdfunding is no replacement for a comprehensive safety net. The platform helps ease financial burdens, but acts more as a supplement to existing coverage options such as insurance, Medicare, and Medicaid. In Wyoming those options are limited by lawmakers who oppose accepting federal dollars to expand Medicaid, and by some of the highest private insurance rates in the nation.

In nearby Riverton, Paulette and Jim Moss launched a GoFundMe campaign to supplement Medicare coverage for a kidney transplant Jim urgently needs. He’s had diabetes for 25 years, which has disabled him and caused kidney failure.

“We are the kind that won’t ever ask for help,” Paulette said. “We are kind of stubborn that way … but sometimes you have to reach out, and the Wyoming community it is really tight.”

A fixture in the ranch roping and horse community, the couple self-publishes The Wrangler Horse and Rodeo News magazine, a digest for competitive ropers and barrel racers. It covers the region from Nebraska and the Dakotas all across the Northern Rockies. Over the years they have published many free advertisements for readers hosting medical fundraisers.

Jim is now on the list to receive a kidney transplant at the Mayo Clinic in Phoenix. He’s had 13 friends volunteer to give him a kidney, but the process of matching a donor can take months. In the meantime, he’s on Medicare disability, which provides for most of his ongoing care and for the treatment.

Paulette isn’t opposed to receiving the government support. “I think the nation should help their people, and I think Canada has a lot of good things [in that way],” she said.

Meanwhile, Paulette is going without health coverage because she can’t afford it under the ACA. “It is risky but I am pretty healthy — knock on wood — and just taking a chance financially,” Paulette said.

She set up the GoFundMe campaign to cover the costs of medicines and the couple’s four-to-six month relocation to Phoenix, which is the amount of time Jim will need for his transplant and recovery. At this point they’ve raised more than half of their $10,000 goal, and have additional pledges of support that will help significantly.

“I don’t care if I’m broke the rest of my life, but I want him to have that kidney,” she said.

The burden of high costs

Back in Lander, the aftermath of the fire continues for the van Dijks. Just last week, Feike rushed their son Ephraim to the burn center in Utah for a potentially deadly staph and MRSA infection related to skin grafts on his scalp. The toddler is now out of the hospital and doing better.

“We are still working with a $40,000 life flight bill, and I have no idea how I can even cover this [recent hospitalization] with Ephraim,” Noelle said. “We are still going through [medical] procedures that we don’t know what the outcome will be.”

In months prior, Feike struggled with the reality of the bills and paperwork because filling it out reminded him of the trauma of being unable to help his children during the fire. In his home country of the Netherlands, citizens pay about one-third of their income in health care taxes, but after that all medical care is provided.

“He was just horrified that you couldn’t go and get care for a reasonable cost,” Noelle said. Before the accident, Noelle didn’t go to the dentist for four years, letting her teeth “fall apart” while the family handled the cost of having children. “[Feike] doesn’t make any sense of it.”

The high cost of just seeing a doctor means that many Americans put off preventive care, Noelle said, not realizing the costs of a life flight or triple-bypass surgery that may come as a result.

Nationwide, medical care is a rising cost for businesses — a cost that erodes America’s economic power, puts a burden on families, and adds to the national debt.

The United States spends about 17 percent of its gross domestic product on health care, making it the second highest-spending country in the world by percent of GDP, behind the tiny Pacific nation of Tuvalu.

“It says about America pretty much what the rest of the world sees — which is that we are headed towards a doomsday flip-flop,” Noelle said. “The amount of money that is [charged] for what is deemed necessary is out of control. It’s like if you had a small problem with your brakes, that you would have to buy a new car every time.”

Noelle said she believes that medical and financial struggles are a fact of life for Americans, but that people can help each other greatly.

“People need to understand that their social-emotional networking and wellbeing is as important as having a 401k, or a car to get to work — because everyone will go through disaster or tragedy,” she said. “They will all be affronted with death, or loss, or chaos of some sort.”