Patients with pre-existing medical conditions worry over health care changes

Fran Cannon Slayton, a children's book author with brain cancer, has summoned a hopeful energy since her diagnosis last year. But she is near despair about the resurfaced Republican plan to repeal and replace the Affordable Care Act, which the White House and Republicans are pushing for a vote as soon as this week.

"I don't think people really understand how serious this is," said Slayton, 50, of Charlottesville, Virginia.

Her chief concern is the amendment to the Republican bill that would allow states to opt out of several requirements, including what some say is the crux of the current health law: the ban on insurance companies charging higher premiums to people, like Slayton, with pre-existing medical conditions.

The complex amendment to the bill has stunned Slayton and other Americans with cancer, heart disease, diabetes and other illnesses who rely on the law's protections, not least because President Donald Trump and Republican leaders in Congress have consistently promised to make sure sick people will not face the same discrimination they did in the past.

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With most polls finding that protecting coverage for people with expensive diseases is a rare priority of both Republicans and Democrats, the proposed changes to such protections have become the flash point that could derail yet another attempt by the Trump administration and Republican lawmakers to vanquish President Barack Obama's signature domestic achievement.

The change was negotiated as part of an amendment to attract the support of conservative House members who opposed an earlier GOP health bill because it retained too much federal insurance regulation. But in gaining their support, it has repelled a number of moderates and sent Trump flailing as he insisted in a series of interviews that the bill would still protect people with pre-existing conditions.

Most major patient advocacy groups have come out against it, and on his late-night talk show, the comedian Jimmy Kimmel made a tearful case for retaining the protections, recounting his infant son's recent open-heart surgery and noting that before the Affordable Care Act, "If you were born with congenital heart disease, like my son was, there was a good chance you'd never be able to get health insurance because you had a pre-existing condition."

While insurers would not be able to deny coverage altogether under the Republican bill, the revised legislation allows states to seek a waiver from the existing rule that requires them to charge the same price to everyone who is the same age in the same region, regardless of how healthy they are. People who went uninsured for 63 days or more in the previous year could be charged based on their health status and see their premiums increase sharply. Healthier people might see their prices drop.

To get a waiver, a state would need some other way to cover people with potentially serious medical conditions, ranging from a reinsurance program that helps pay for customers needing very expensive care to a high-risk pool. Such pools existed in 35 states before the Affordable Care Act, but they served only a small fraction of the people who needed coverage and most were underfunded, according to an analysis by the Kaiser Family Foundation.

States could also seek to opt out of a requirement that all insurance plans cover 10 "essential health benefits," including prescription drugs, maternity care, mental health care and addiction treatment. By allowing insurers to cover less, the change could bring down premium prices, but also leave people without access to services that hundreds of thousands have received under the Affordable Care Act, including treatment for opioid addiction.

It is hard to predict how broadly the waivers would affect the millions of people with pre-existing conditions. Many people do have lapses in coverage between jobs or at other times, and they could be priced out of any program a state set up. Healthy people would most likely gravitate to plans that offered minimal coverage, which could greatly increase costs for those who need more comprehensive care.

Governors have so far remained quiet about whether they would seek waivers, but for many people who rely on the individual insurance market, these provisions hark back to a time when insurers scrutinized the health of all individuals before they could sign up. In some states, policies were available with riders that excluded a given condition. Insurers could also just charge people with medical conditions much higher prices.

Larisa Thomason, of New Market, Alabama, remembers the day 15 years ago when her husband got a letter from Humana informing him that his policy would not cover any cancer care because a preventive colonoscopy had turned up several benign polyps. Likewise, an insurer in Wisconsin refused to cover any treatment related to Alice Thompson's reproductive system, starting in 2003, because a doctor had written in her medical record that she should have a hysterectomy to eliminate painful menstrual periods.

"Had I gotten ovarian or uterine cancer, I wouldn't have been covered," said Thompson, 62, of South Milwaukee. "For 10 years, I was living under this uncertainty of 'what if.'"

Thompson, an environmental consultant who is now being treated for vision problems and headaches, added that when she switched to an Affordable Care Act plan in 2014: "I just remember the sense of relief being huge. Now, the specter of all this coming back is horrifying. I don't think I'm being overly paranoid to think, what if I have to move my business to a different state to get coverage?"

Before the Affordable Care Act mandated essential benefits to help make sure people had broad coverage, insurers routinely excluded various medical services. Almost two-thirds of people who bought their own policies did not have maternity benefits, a third did not have coverage for substance abuse services and about a fifth did not have care for mental health issues, according to a federal analysis of coverage before the law.

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Ellen Paquette, 48, remembers losing her insurance when she moved back to Pennsylvania in the late 1990s. A freelance artist and musician who lives in Warren, she has never gotten coverage through an employer. Because she had depression, "I had a terrible time finding insurance," she said, even though she had never been hospitalized and was otherwise in good health.

When Paquette eventually found a policy, it had a rider that excluded any treatment for mental health.

The prospect of allowing insurers to once again determine which benefits to cover "feels like such a raw kind of discrimination," she said.

She and her husband, Thomas, 58, are now covered under the federal law. Studying the details of the replacement bill, she said, "I've gone through phases where I feel almost panicky."

In the past, excluding certain conditions from coverage sometimes left people with crushing medical debts. John Gillespie and his wife, Beth, ran their own small auto repair shop. In the late 1990s, the couple, who live in Beaver Falls, Pennsylvania, could not find an insurance company willing to cover her epilepsy.

At one point, Beth Gillespie had to go to the emergency room because she was having seizures, and the doctors worried that she had developed meningitis. She was in the intensive care unit for three days. Her seizures were in fact because of the epilepsy, the couple faced nearly $20,000 in medical bills. "We ended up making payments on that for several years," John Gillespie said.

When the couple was finally able to find a plan that covered her disease, the premiums were astronomical — approximately $2,400 a month for both of them. "It was easily the single largest expense we had," John Gillespie said. The couple could barely make ends meet, despite his working 60 hours a week and teaching some night classes. They refinanced their house three times.

The couple now pays $1,200 for coverage. They are both 58 and semiretired, with little in the way of savings if they were to face another medical emergency.

Slayton and her husband, a lawyer, are paying nearly $1,500 a month for a plan that covers their 13-year-old daughter and them. They earn too much to qualify for a subsidy to help with the cost. While more expensive than they would like, the plan covered her surgery last year to remove a brain tumor, and Slayton, who has been blogging about her experience, is doing well.

In the past, even the state high-risk pools proved an unaffordable solution to many people. Janice Elks, 50, a small-business owner in Omaha, had cervical cancer and suffered from neuropathy when she looked for a policy. "I could not get insurance at all, of any type, for years," she said. "I would apply over and over."

Her only option was Nebraska's high-risk pool. Elks calculated it would cost her about $15,000 in premiums a year for a policy, while her medical expenses amounted to only a few thousand dollars a year for her seizure medications and some steroid shots. She now pays just $640 a month.

Elks, who describes herself as a "liberal-leaning independent," says she is "terrified" over the talk about changing the protections for people like her. She now has tachycardia, which causes her heart to beat faster than normal when under stress and worries she will eventually need an operation.

"Those kinds of surgeries are expensive," Elks said. But, at 50, she is 15 years away from being eligible for Medicare. "Will I live to get Medicare?