BATAVIA, Ohio >> The tumor grew like a thick vine up the back of Eric Richter’s leg, reminding him every time he sat down that he was a man without insurance. In April, when it was close to bursting through his skin, he went to the emergency room. Doctors told him it was malignant and urged surgery.
His wife called every major insurance company she found on the Internet, but none would cover him: His cancer was a pre-existing condition. In desperation, the Richters agreed to pay half their hospital bill, knowing they could never afford it on their combined salaries of $36,000 a year.
No other group of Americans faces higher stakes in the impending Supreme Court ruling on the Affordable Care Act than those with pre-existing conditions. The law, once its major provisions take effect, would prohibit insurance companies from turning people away or charging them more because they are sick. In exchange, most Americans would be required to have insurance, broadening the base of paying customers with an infusion of healthy people. Those who did not buy insurance would be subject to financial penalties.
The Government Accountability Office estimates that 36 million to 122 million adults under 65 have a pre-existing condition. As many as 17 million do not have insurance. Many try to buy coverage on the individual market, but in most states that is either impossible or too costly.
Experts are divided on what the ruling could bring for this group of Americans. The Obama administration and the insurance industry say that if the mandate that everyone buy coverage is struck down, the protections for people with pre-existing conditions should be, too. If the ailing pile in without the larger pool of healthy people, premiums would skyrocket, insurers say.
“When you have insurance reforms without requiring everyone to participate, it becomes a sickness fund, not an insurance system,” said Karen Ignagni, president of America’s Health Insurance Plans, the national trade association representing the health insurance industry.
Mitt Romney, the presumptive Republican presidential nominee, favors repeal of the law. He said last week that he would preserve coverage for people with pre-existing conditions but only if they had been insured before and lost coverage when they were laid off or changed jobs, a more limited protection than the current law provides. He did not explain how he would get insurers to cover such people.
Some experts argue that even if the mandate is struck down, there would still be options that could lift people with pre-existing conditions to a more secure place.
States would still have regulatory powers, said Sara Rosenbaum, a professor of health law and policy at George Washington University, and the law contains tools to encourage voluntary participation. The penalty for people who do not participate is so weak, she added, that even with the mandate, enrollment was expected to be low at first anyway.
It is people like Eric Richter and his wife, Dani — uninsured and living in the unstable space between poverty and the middle class — that the law was intended to help. They earned too much to qualify for government-sponsored health care but worked in jobs that did not come with health benefits.
Under the law, about half the newly insured would be covered by Medicaid, which would extend to individuals earning less than $15,400. The other half, the working poor, people with incomes up to $44,600, would receive subsidies.
According to a subsidy calculator provided by the Kaiser Family Foundation, the Richters’ insurance premium would be $165 a month under the new law, a sum they said they would eagerly pay. The small stone drilling firm where Eric Richter works offers no health coverage, and the family could not afford the more than $600 a month it would cost to buy it on their own.
“It’s hard to pay for the unknown, when you’re struggling to cover the known,” said Eric Richter, who is 39. “I know it sounds irresponsible, but that’s just the way it was. It’s a game of roulette you hope you’re going to win.”
After he got the tumor on his leg, the couple said, Richter tried to better his odds. He cut out sugar and ate beets he grew in his garden because he heard that might help. But the bump kept growing. His wife sewed him special pants to accommodate its size, as big as a melon. He started standing in church. Driving was excruciating.
When they found he had cancer, the family struggled with how they would pay for his care. Once, he was turned away from a scan because he did not have insurance. Eventually a doctor took him under his wing and insisted he be treated.
In late May, Richter had surgery. He is waiting for the bill. He has not been able to work as he recuperates.
But a piece of bad luck may solve the family’s insurance problem, at least for now. Dani Richter lost her job at an electronic records firm. A hospital financial adviser told them that with their income effectively zero and the medical bills mounting, they might qualify for Medicaid. They are waiting to hear.
“We’re back to crossing our fingers,” Dani Richter said.
The Richters would benefit from the law, but in a sign of how poorly it is understood, they said their impression was that it would force people to pay for something they cannot afford.
“That’s not going to go over well,” Eric Richter said.
Currently, uninsured people with pre-existing conditions often end up getting care but at tremendous cost to the public, hospitals and themselves. Some divorce to have household incomes small enough to qualify for Medicaid. Others get help from hospital charities. Still others rack up large bills that go to debt collection agencies.
JoAnna Hanson, a mother of three in Lincoln, Neb., who works the night shift at a Wal-Mart, said she tried for years to get health insurance but because of a rare kidney ailment did not succeed. After a cyst burst in an ovary several years ago and she was rushed to the hospital, her bill was sent to a collection agency. A total of $330 a month is now sliced from her and her husband’s paychecks, more than a tenth of their income.
“The thing we worry about most is, do we pay the rent or do we feed our kids?” said JoAnna Hanson, who is 34. They have not paid rent on their trailer’s lot in three months.
Still, although the law would benefit her, she does not like it.
“I don’t think it’s right because you can’t force someone to buy something when they can’t afford it,” she said.
But some of those already benefiting from the law like it.
Pamela Garland, a retired corrections officer in Lincoln, Neb., found herself uninsured with a cancer diagnosis in February. No one would cover her, and after 44 years of marriage, she and her husband, Norman, considered divorce so Pamela Garland, who is 63, could qualify for Medicaid.
One night in April, up late in the hospital computer center, Norman Garland found a better solution: The Pre-existing Condition Insurance Plan, financed through the new law, would take his wife despite her tumor. The plan offers subsidized coverage under the Affordable Care Act. The $421 monthly premium was based on her age, not her illness.
“It was the best thing that our government has done for us in many, many years,” he said, sitting in the small apartment they have rented since selling their house to help pay medical bills.
Without that coverage, Norman Garland said, his wife probably would not have gotten the quality of care she later received — a new high-tech radiation treatment that stopped the tumor growth near her spine and cost about $107,000. The plan, intended as a bridge, is set to expire on Jan. 1, 2014, when major provisions of the law are scheduled to take effect.
With the law’s fate uncertain, participants in the plan, like Maryann Kaine, 52, a music store owner in Fredericksburg, Va., are worried. Kaine signed up for the program after she was shut out of her family’s policy because she had had surgery on her back.
“I can’t imagine that they’ll just dump all of us back out into the world of no coverage,” she said.