When Illinois' Obamacare co-op went belly-up last month, Valerie Kincaid faced losing not just her insurance but her team of cancer doctors, too.
For six years, the 41-year-old leukemia patient has relied on doctors at Northwestern Memorial Hospital in downtown Chicago to keep her disease at bay. Once a month, she visits the hospital to receive an oral therapy that keeps her chronic lymphocytic leukemia under control and allows her to live a relatively normal life with her husband, Brian, and her 11- and 13-year-old sons.
But maintaining coverage that includes Northwestern in its provider network has been a major challenge for Kincaid and her family, who don't have employer-sponsored coverage and rely on Illinois' marketplace set up under the Affordable Care Act.
"I built up this ongoing relationship with these doctors, who I credit as saving my life," Valerie Kincaid said. "The uncertainty of not knowing whether or not I can keep continuing to go to them … the stress of it was huge."
The Kincaids were among 39,000 Illinois residents whose Land of Lincoln plans were terminated last month. The nonprofit insurer, like most of its counterparts in other states, collapsed under heavy financial losses, forcing its customers to forego coverage or buy new policies to cover them until the end of the year.
Brian Kincaid had bought the Land of Lincoln coverage because it was the only marketplace plan he could find with Northwestern in-network. As he surveyed plan networks last month, he couldn't find any that included the hospital.
He finally found a work-around with a Blue Cross HMO plan. The plan network included Valerie Kincaid's primary care doctor, who is able to write referrals for her oncologists at Northwestern. But the couple is still waiting to find out whether they will be able to stay on the plan for 2017, as the final marketplace offerings haven't been announced.
Valerie says she's thankful for parts of the 2010 Affordable Care Act, such as its provision that bans insurers from discriminating against people with serious health conditions like her own. But she says trying to navigate the marketplace has been an entirely different story.
"It's just been this wild ride and it's been extremely stressful," she said. "There aren't enough words for me to explain how stressful it's been."
While the Obamacare marketplaces are facing diminished insurer competition and big rate hikes around the country, Illinois' situation for the upcoming year is particularly gloomy.
Next year's average rate increase for the lowest-cost "silver" marketplace plan is 45 percent, according to an analysis by the Illinois Department of Insurance. And Blue Cross Blue Shield of Illinois, which covers the most marketplace customers, is raising rates by 51 percent on average.
While one insurer, Cigna, is entering the state's marketplace next year, four others — including Land of Lincoln — are dropping out. A majority of the state's counties will have just two insurers, and seven counties will have just one, according to an Oct. 14 analysis by the firm Oliver Wyman.
The Kincaids live in Kendall County, one of the counties with a single marketplace insurer next year. Brian said he's hoping to keep their Blue Cross plan with the workaround, but he has backup ideas just in case. Options could include formalizing his business and buying a small group plan or buying an off-marketplace plan just for Valerie with Northwestern coverage, although then she wouldn't be eligible for subsidies to offset the premium costs since Obamacare subsidies don't cover off-marketplace plans.
Brian Kincaid doesn't have access to an employer plan, since he works as an independent contractor. Valerie had coverage through her teaching job when she became ill in 2010, but lost the plan when she quit amid treatments that compromised her immune system.
For a while, she was covered through a state-sponsored plan available to patients whose health conditions made them unable to buy private coverage, but when the Obamacare marketplaces became available, the family signed up.
But the Kincaids had to switch marketplace plans twice. For the first two years, 2014 and 2015, they had a different Blue Cross plan that included Northwestern in-network. But they bought a Land of Lincoln plan for 2015, after Blue Cross dropped the hospital.
"To me, that was not just an inconvenience, but it was a predatory move," Brian Kincaid said.
A spokeswoman for Blue Cross Blue Shield of Illinois told the Washington Examiner that continuing to include Northwestern in-network wasn't "sustainable."
"Northwestern was part of a broad PPO option that was previously offered in 2014 and 2015," said Kristen Cunningham. "Given the adjustments necessary to continue to offer products on the individual marketplace, cover our members' costs now and save for our members' needs in the future, it just wasn't a sustainable offering."
Now the Kincaids are back on a Blue Cross plan for the rest of the year, but it is an HMO with a reduced network of doctors, requiring them to get a referral from Valerie's primary care doctor for her treatments at Northwestern.
To top it off, they and other Land of Lincoln members have to pay the entire deductible for their new plan, even though just three months remain in the year.
"It's almost a comedy act," Brian said.
For healthy people who see doctors only occasionally, it doesn't matter much if insurers narrow their provider networks, and it can even be a positive by helping tamp down premiums. But for patients with serious conditions, it's a huge disruption if they're forced to switch to doctors who don't know their medical history.
In additional to leukemia, Valerie has a serious liver condition called primary biliary cirrhosis, making her care more complicated. Once, she visited the emergency department of Edward Hospital in nearby Naperville and ended up getting an IV drip, which would have been standard care for most patients but was dangerous for her because of the liver disease.
After getting her stomach drained of fluid at Northwestern following the Edward Hospital visit, the Kincaids decided Valerie would always visit her doctors at Northwestern even though the hospital was further away.
"We don't buy plans based on premiums and deductibles and copays like most people," Brian said. "We buy for the doctor network first and foremost."
Illinois insurance commissioner Anne Melissa Dowling has urged state consumers to "look hard" at details of the 2017 marketplace plans, including their provider networks, copays and co-insurance. She has downplayed the insurer exits, which are forcing 70,000 Illinois residents to select new plans.
"There's nothing happening in Illinois that isn't happening nationally," Dowling told the Associated Press earlier this month.
Dowling spokesman Michael Batkins told the Examiner they are working to improve the marketplace under "deep constraints" of the Affordable Care Act.
"Under the deep constraints of the federal ACA, we are doing everything we can to foster a robust, competitive and financially sound marketplace for health insurance consumers in Illinois," Batkins said.
Some health analysts have suggested the sharp premium hikes are a one-time occurrence, as insurers adjust prices they had set too low to begin with and lose out next year on federal dollars provided through the healthcare law as a temporary way to pay for their losses.
But it's less clear how insurers can be incentivized to offer more plans with large doctor networks, as those plans tend to attract sicker patients such as Valerie Kincaid.
Last year, five of Illinois' marketplace insurers sold preferred provider, or PPO, plans that allow patients to see specialists without a referral and pay more to see doctors out of network. This year, Blue Cross is the only one selling PPO plans.
"This is a problem," said Jon Gabel, a senior fellow with the National Opinion Research Center at the University of Chicago. "You gotta be able to choose a non-narrow network plan. And certainly the broad networks, they attract the worst risk."
Valerie Kincaid might have better insurance options if she went back to work for an employer that offered coverage. But she doesn't think that resuming her former teaching career would be good for her health, as she has a compromised immune system. She says that right now, it feels "overwhelming" to think about starting a second career.
Brian says he partially understands why insurers made the decisions they did, but he also gets frustrated when he hears about insurance company executives getting bonuses but cutting doctor networks.
"Playing with doctor networks to ensure bottom lines, and then pulling out of markets, and then paying seven and eight-figure bonuses … somewhere there's a problem," he said.