Colette Briggs asks her mother, Michelle, to tighten her pigtails. (Katherine Frey/The Washington Post)

Four-year-old Colette Briggs bounded into the dining room where her parents sat in the midst of another distressing conversation. Oblivious to their anxiety, she cheerily asked her mom to retie one of the loose pigtails atop her head.

Ever since her brown locks regrew long enough for a ponytail, hair has been a big deal around here, her father, Christopher Briggs, said as Colette skipped off to rejoin her older sisters.

To watch the bubbly preschooler play, a perma-smile on her cherubic face, no one would know she was sick. But for half of her young life, since the day a Lyme disease scare uncovered aggressive leukemia, she has been in and out of chemotherapy treatments.

Now, as the youngest of the Briggses’ nine children battles cancer, her parents, Christopher and Michelle, are in a desperate fight of their own.

The health insurance plans available to them on the individual marketplace do not cover Inova Fairfax Hospital, where Colette receives spinal tap chemo and emergency care. For years, the Loudoun County family purchased insurance from Anthem, but this year the carrier decided to stop selling in Virginia. Under pressure from the state, it returned to some counties and cities that otherwise wouldn’t have had any options.

The Briggses’ Zip code was not among those.

The only insurance option for Christopher Briggs, who is a self-employed communications consultant for nonprofit groups, is Cigna. But Cigna does not cover Fairfax Hospital, the only local hospital with a dedicated pediatric cancer unit and where Colette has been a patient for more than two years.

“We have spent the last two months on the ceiling trying to figure out where the insurance is going to come from,” Christopher Briggs said one recent afternoon. “And I have to solve this problem for myself.”

He pays Anthem $1,000 a month after the subsidies he got because of his large family, he said.

Colette Briggs, 4, enjoys a snack with her siblings. (Katherine Frey/The Washington Post)

The family's distress is an extreme example of the pressures facing health-care consumers this year. The White House has threatened the Affordable Care Act, changed rules and shortened the window to shop for insurance to Dec. 15. In response, carriers have raised premiums and exited the individual marketplace in areas that might not be profitable.

The exodus has left consumers across the country who don’t get their insurance through an employer with fewer health-care choices, and in cases such as the Briggses’, without access to the care they had come to rely on for chronic conditions.

In 2014, the first year the ACA marketplaces were open, there was an average of five insurers to choose from in each state, according to Kaiser Family Foundation data. In 2018, it will be three and a half. Karen Pollitz, a senior fellow at Kaiser, called it a “sleeper issue.”

“I’m not shocked to hear it,” she said of the Virginia family’s predicament. “From the beginning, the first year Obamacare opened, there was a healthy mix [of plans], and that started to constrict quickly. I always worried that this was happening.”

The ACA included a guarantee to consumers of “network adequacy standards” intended to ensure every marketplace had a sufficient “number and types of providers.” But those standards have never been defined or enforced, Pollitz said. There are no specific measures — such as how long or how far it takes to get to providers or what percentage of in-network doctors a carrier has to have. “What we’re left with is just words” about adequacy, Pollitz said.

Ken Schrad, spokesman for the Virginia State Corporation Commission's insurance bureau, said the state "has been fortunate to have sufficient number of carriers on the federal exchange." But he said it has been clear the entire year that the uncertainty out of Washington would have negative effects on the marketplace individuals use to shop for coverage.

It is not uncommon for insurers to cut larger research-based hospitals from its plans on the exchanges as a way to cut costs. By narrowing their networks, carriers avoid paying the higher rates that academic medical centers charge.

But some consumers received welcome news this week when Cigna announced on Wednesday that it had reached an agreement with Virginia Commonwealth University Medical Center to bring the Richmond-based hospital system in-network.

For Cindy Jones, the announcement ended months of stress.

When Anthem did not reenter the market in Henrico County, just outsideof Richmond, where Jones lives, she found herself in the same predicament as the Briggs family.

Her adult son, Daniel Bowling, was diagnosed two years ago with leukemia. He had been living and working in Myrtle Beach, S.C., but at 27 years old moved home so his mother could care for him and he could receive cancer treatments at VCU. Too old to go on his mother's employer plan, he bought highly subsidized Anthem insurance — for about $30 a month, his mother said — on the individual marketplace.

Cindy Jones with her son, Daniel Bowling, at The Medical University of South Carolina in October 2015 after he was first diagnosed with leukemia. He soon after transferred to Virginia Commonwealth University for his treatments. Family photo)

Jones is Virginia’s director for Medicaid, the state-federal partnership providing health-care coverage to low-income and disabled residents. But even with her deep connections, she was helpless when her son’s only option for insurance didn’t cover VCU. She even considered quitting her job and moving with her son to North Carolina so he could receive care at Duke University Hospital.

The experience has made her a better Medicaid director, she said, because she is more empathetic when people call in angst about their coverage.

“The navigation of the health-care system is almost as bad as the disease,” she said. “We talk about the number of people who might have lost their care, but behind each of those numbers is a family under severe distress wondering how we’re going to handle this next. It doesn’t matter who you are; when you have a sick child it’s devastating.”

Briggs has spoken at length with representatives at Cigna who he said were sympathetic but offered little guidance. In an emailed statement to The Washington Post, Cigna said that it does review “highly-specialized cases” and works with members if there’s a good reason they cannot “immediately transition to another in-network health care professional.”

But until Cigna makes a similar arrangement with Inova or grants Briggs a special exception, Christopher Briggs is on his own, desperately searching for a solution.

He has called the state insurance commission and his congressional representatives. The office of Republican Barbara Comstock sent him a form to fill out before anyone would hear his issue, he said. A constituent services representative in the office of Sen. Mark R. Warner (D) was kind, Briggs said, but couldn’t offer a solution.

Warner spokesman Kevin Hall said the senator’s office reached out to Cigna this month and received assurance that it would try to work with the Briggs family.

“It’s heartbreaking that it’s families like the Briggses bearing the brunt of the confusion and expense” of attempts to repeal the ACA, Hall said. “We do what we can; we try to ring the bells at a higher level than individuals can reach on their own.”

At his most desperate, Briggs considered selling his home and moving the family to another county in Virginia that offers Anthem coverage or to another state such as Pennsylvania or Texas, which have top-tier children’s hospitals.

Some health-care experts suggested he rent or buy a small apartment in another county and list it as his primary residence. But he has no interest in committing insurance fraud, he said.

The Briggs family — the youngest, Colette, 4, is battling leukemia and is flanked by her mother, Michelle, and father, Christopher, and from left behind them is Christopher, 16, Isabela, 14, Sophia, 7, Andrew, 11, Genevieve, 9, Christiana-Marie, 18 and Alexander, 15. The eldest is Maria-Teresa, 21, who is away at college. (Katherine Frey/The Washington Post)

Even if Briggs could move his 11-person family to another Zip code, which he’d have to do before open enrollment closes in mid-December, it would feel like a tenuous fix because there is no guarantee the plan he would get would be there next year.

He also considered resurrecting an academic research nonprofit organization he established in 2005 but never got off the ground, and hiring a few employees so he could be eligible for group insurance. But raising seed capital to get the organization going has proven impossible in such a short window of time.

His final Hail Mary pass is to give up his solo business and go back to working for someone else. He is in talks with a former client to hire him so he can buy employer-based insurance. The premiums under the coverage from his former client would be as much as $3,000 a month, he said, triple what he had paid Anthem.

It means giving up his independence, but the only thing that matters now, he says, is Colette.

“If we lose her,” Michelle Briggs began to say, her voice catching and trailing off. “I’ll be happy we had even five minutes,” Christopher Briggs said tearfully.

Colette Briggs, 4, center, has a tea party with stuffed animals and her youngest sisters, Sophia, 7, left, and Genevieve, 9 (Katherine Frey/The Washington Post)

They joined Colette and her two sisters in the playroom, where the girls were hosting a tea party. Colette pulled cutout photos of Disney characters from her Make-A-Wish Foundation box. She wants to sleep in Cinderella’s castle and eat Mickey Mouse-shaped waffles at Disney World. But only if her siblings can come, too.

Christopher Briggs stood in the doorway and quietly watched his little girl play, so full of life.

Then Colette asked her mom to retie her pigtails.