One of the most significant aspects of the Affordable Care Act is its provision outlawing discrimination against people with pre-existing conditions. Under it, insurance companies can no longer deny coverage to, or raise rates for, people afflicted with long-term chronic illness — an estimated 52 million Americans (not counting the elderly) who suffer from a variety of conditions ranging from obesity to mental illness to cancer to diabetes to epilepsy.
You know: the people who need affordable health care the most.
Now that provision is in peril as President Donald Trump and the Republican-controlled Senate prepare to dismantle the ACA. And while doing away with the provision might well reduce health-care costs for the healthy among us, the mere threat of repealing it is enough to initiate a genuine public health crisis. Without pre-existing condition protection, people are less likely to get tested for various diseases in the first place, and often don’t find out they have them until it’s far too late.
“There’s a fear people who have pre-existing conditions won’t get medical care [if pre-existing conditions aren’t fully protected],” says Claire Brindis, director of health policy studies at the University of California, San Francisco. “Many people will say, ‘I don’t want to find out what’s wrong with me.’ They’ll be worried a pre-existing condition will show up in their medical records and raise their premiums.”
Trump famously said he’d retain the pre-existing provision after meeting with then-President Obama in November, but Tom Price, Trump’s nominee for Secretary of the Department of Health and Human Services, is less committed. Price has proposed an alternative “continuous coverage” provision that would only protect people with pre-existing conditions as long as they have 18 consecutive months of coverage. That is, if a person goes a period of time without health insurance, insurance companies will once again be able to deny them coverage based on any pre-existing condition they may have.
This is slightly better than before the ACA, when pre-existing conditions weren’t covered at all, and the people who had them were either denied insurance outright or faced prohibitively high insurance rates.
But people don’t even need to lose their coverage for Price’s plan to have a negative impact on the public health, experts say. The mere threat of losing protection due to a pre-existing condition is enough to discourage people from testing for one in the first place. This makes it far more likely that serious illnesses will go undetected and untreated.
“No pre-existing condition protection will discourage people from getting tested [for various diseases], because if they’re positive, it will be difficult for them to get insurance.”
Many pre-existing conditions are the kinds of serious afflictions people have to manage for their entire lives — hemophilia, kidney disease, heart disease, cerebral palsy and muscular dystrophy, to name a few. But people may also be denied coverage for more manageable conditions such as obesity, alcoholism, depression and sleep apnea.
Prior to Obamacare, millions of Americans with these diseases walked a medical “tightrope,” Brindis explains, constantly weighing whether getting treatment was worth the risk of being denied coverage in the future. It was an ironic system, in which the people who most needed medical treatment lived in fear of receiving it.
For example: Instead of a man participating in a sleep study and discovering he has sleep apnea — a common condition for men older than 40 — and treating it, he’d forego the test and live his life in perpetual fatigue.
“That’s something that used to go through people’s heads a lot, and today we take it for granted,” says Cynthia Cox, associate director at the Kaiser Family Foundation, a nonprofit dedicated to health policy. “No pre-existing condition protection will discourage them from getting tested [for various diseases], because if they’re positive, it will be difficult for them to get insurance.”
People have a “selective memory” about what life was like before ACA. They forget about the millions of Americans who used to live in fear of receiving the healthcare they needed.
There will “absolutely” be a chilling effect on people getting tested for various diseases, says John Romley, professor of health policy at the University of Southern California. “In terms of HIV, that would be a disaster,” he adds — i.e., people will go untested and some will unwittingly infect others.
Other serious illnesses will be detected too late, long after the point they could’ve been effectively managed. “It’s always best to detect a disease early,” Cox continues. “If fear results in a delayed diagnosis, it’s more complicated to treat.”
This is precisely why doctors suggest all men of a certain age receive routine prostate exams. “These guidelines exist because there have been extensive studies on when it’s the optimal time to prevent these diseases,” Cox adds. It’s also why certain preventive treatments, such as blood pressure and HIV screenings, diet counseling and various immunization vaccines are free (yes, free) under plans sold through ACA.
Anyone who does lose protection for their pre-existing conditions under Price’s plan will almost certainly see their insurance premiums increase, which will discourage participation in the health system even further. “Health care is like any other good or service: If the price increases, people demand less,” says Marcelo Perraillon, professor at the Colorado School of Public Health at the University of Colorado.
The ACA is not without fault, Brindis adds. Healthy Americans have had to bear some of the cost of insuring millions of previously uninsurable people with pre-existing conditions. For instance, premiums for plans sold through ACA are expected to rise 22 percent this year alone, triple the 7.5 percent they increased from 2015 to 2016.
Critics say this is partially because there aren’t enough healthy Americans buying through ACA and mitigating the risk of having to insure the millions of perpetually ill Americans who, before ACA, were denied health insurance altogether.
Price’s continuous coverage proposal might actually increase participation in whatever plan Republicans trot out as a substitute for Obamacare, as people will buy plans just to avoid losing pre-existing condition protection. “The point of continuous coverage is to force healthy people to bear some of the cost,” Romley says. “If you lose your job, it will encourage you to buy a replacement plan just to keep continuous coverage.” This will bring more healthy people to the insurer pool, effectively lowering premiums across the board. It’s more of a stick than a carrot, but it could fix the ACA’s most pressing issue — and some believe it could work.
The one thing public health experts all unequivocally agree on, though, is that any threat to pre-existing conditions, even if just perceptually, will be negative for public health.