Joanne Fitzgerald was getting divorced and was stressed out. When stomach pain kicked in, she saw a doctor to have it checked out.
That was her mistake.
The doctor diagnosed a mild form of gastritis, an inflammation of the stomach lining, and recommended some over-the-counter medicine. But when the divorce became final, in 2008, she lost health coverage from her husband’s employer, and insurer after insurer refused to cover her because of the condition. She was finally offered a policy that excluded coverage for anything related to her gastrointestinal tract.
“I thought I was being smart in going to the doctor and getting checked out,” Ms. Fitzgerald, 55, who currently lives in Washington, D.C., said recently. “Then I tried to go get insurance and everyone denied me.”
Her fortunes changed under the Affordable Care Act, the major health law signed by President Barack Obama that required insurers to cover pre-existing medical conditions. She was one of the millions of people who jumped at the opportunity and bought a policy available under the new law.
Now, after President Trump and the Republican-controlled Congress have vowed to repeal and replace the health law, one of the most vexing questions is whether people like Ms. Fitzgerald will be covered.
About 27 percent of people under 65 are thought to have some sort of pre-existing condition that will most likely leave them without individual insurance if the law is repealed, according to a recent study. The guarantee of coverage has already become a rallying cry for people who want to keep the law.
The issue “is the third rail” for the Republicans, said Michael Turpin, a longtime health industry executive.
Before the law, a fairly typical life event — like a divorce or the loss of a job — and a relatively minor medical condition could upend a person’s health coverage options. Stories of sick people unable to get coverage when they needed it most were legion.
Mr. Trump insists he wants to keep the pre-existing requirement for insurers, and other top Republicans say people who want coverage should not be turned away. Details about how they will cover people with existing medical conditions have not yet emerged, but many lawmakers have started pushing an idea — known as high-risk pools — that left many people uncovered or with strict limits to their coverage in the past.
The challenge for lawmakers is this: How do you get insurers to cover people who will definitely need costly medical care — and do so without making insurance too expensive for everyone?
The Affordable Care Act addresses that question by requiring everyone to get coverage or face a tax penalty. That mandate is meant to increase the number of healthy people who have insurance, distributing the costs of caring for those who are sick across a wider population. The thinking is that if enough healthy people sign up, the costs of sick people will be offset for insurers.
Top Republicans, though, say the system is not working and point to double-digit price increases for premiums.
“There is a better way to fix that problem without giving everybody else all these massive premium increases,” the House speaker, Paul D. Ryan, said at a recent televised forum.
Finding a fix is far from simple. Before the law was passed, insurance companies evaluated the health of each person applying for coverage before offering a policy, and priced the plan to reflect the possible cost of care. The companies wanted to minimize the risk of losing money by paying for costly medical care for too many of their customers.
Often, insurers offered no options to people with pre-existing conditions, because they considered the potential costs to be too high. As a result, 35 states had high-risk pools, the program again on the lips of top lawmakers, including Mr. Ryan.
The high-risk programs offered a separate insurance pool for people with potentially expensive medical conditions. The idea is that by separating sick people from the majority of people who are healthy, insurers could offer cheaper rates to the healthy people. Insurers could charge higher prices to those with existing medical conditions, but they would also rely on other sources of funding, including from the government, to cover their costs.
The system worked for Dan Nassimbene and his wife, who had breast cancer but is in remission. They enrolled in Colorado’s high-risk pool for three years. She paid about $375 a month for a plan that covered most of her treatments.
In 2014, though, the high-risk pool was closed, and Mr. Nassimbene bought a plan that met the requirements of the Affordable Care Act. The cheapest plan he could buy for himself and his wife cost around $900 a month and came with a family deductible of around $12,000, much higher than it was before. His income was too high for him to receive any government subsidies, which help about 80 percent of people buying such plans.
“I had coverage but no access,” said Mr. Nassimbene, 55. He has since switched to a Christian health care sharing ministry, in which members cover one another’s medical bills. It does not qualify as coverage under the law.
In many cases, the high-risk pools were overburdened financially, leaving many people without insurance or with tight restrictions on coverage. Insurers refused to cover the individuals who were likely to have the highest expenses, like those who had H.I.V. or serious kidney disease, and the pools lost money.
Many states had to turn applicants away — in some states, only a small percentage of those who applied received coverage — and the insurance was sharply limited to control spending.
In Washington, over 80 percent of the people referred to the state’s high-risk pool never got health insurance, said Mike Kreidler, the state’s insurance commissioner. In California, which relied on lawmakers to allocate money as part of the state budget, there was a waiting list, recalled Richard Figueroa, who was a senior administrator for the program.
The pool operated on a first-come-first-served basis, Mr. Figueroa said, without regard to people’s income or the severity of their medical condition.
“There were people literally dying on the waiting list,” he said.
In addition, most of the states offering coverage had caps on payments for medical care. Washington’s annual maximum was $2 million, while California’s limit was $75,000 a year. Under the Affordable Care Act, insurance plans cannot have such a limit.
In California, the program dwindled away until it served only 6,300 at the end of 2011.
Dennis Carr, for example, worked as an independent real estate agent when the financial markets crashed in 2008. He had savings, but he eventually had to drop his Blue Cross plan because his income had tailed off and he could not afford it. Mr. Carr, who is now 51, said his goal was to resume coverage as soon as he was financially secure.
When he reapplied to the same insurer a few months later, he was rejected — and then rejected again by another insurer because of his asthma and a sinus condition.
“It was just a real, real slap,” Mr. Carr said.
He was directed to California’s high-risk pool but found the premiums too high. He moved to Mexico as a way to afford his medications. He now lives in Phoenix, where he has coverage through an employer.
“For all the thousands of people who self-selected out because they couldn’t afford it, it broke our hearts on a daily basis,” Mr. Figueroa, the California official, said.
For others, the coverage offered by the high-risk pools was too limited for them to receive the care they needed.
Beth Martinez, 40, who has multiple sclerosis, was forced to join Texas’ high-risk pool when she and her husband moved to Austin. Only six visits to the doctor were covered, and she found she could not afford the annual M.R.I. recommended to monitor her disease because of her high deductible. At one point, she said, she went four years without an M.R.I.
She and her husband now live in California and are covered through private plans offered through that state’s marketplace, which meet all the health law’s requirements for pre-existing conditions. Because she can work only part time, she is eligible for federal subsidies, which bring the couple’s costs to $70 a month. Ms. Martinez had paid $275 a month in the Texas pool to cover herself, and her husband was uninsured.
She now gets the M.R.I.s she needs under her plan, and her policy even pays for physical therapy, which allows her to put in longer hours at her job as a hairstylist and makeup artist.
That sort of quality coverage, Ms. Martinez said, is a big departure from what she had through the high-risk pool, adding that “it was definitely some of the worst insurance I had in my life.”