ASHINGTON — As Republicans confront the thorny realities of repealing and replacing the Affordable Care Act, groups representing patients with the most serious diseases fear those plans could return the US health care system to one in which sick people are not guaranteed health insurance.

It comes down to the individual mandate, the law’s most unpopular provision, which required every American to buy insurance or face a penalty.

Republicans want it gone. But if they nix the mandate, it becomes exceedingly difficult to keep the popular insurance reforms — including the requirement that health plans cover everybody, even people with costly preexisting conditions, without charging those people more. President Trump and other Republicans have sworn they would keep that provision, which ended discrimination against America’s sickest patients.


So Congress is trying to figure out how to end the mandate while still guaranteeing affordable coverage to everybody. One prominent idea is known as continuous coverage. It would require insurers to cover people, no matter their health history, as long as they never have a lapse in coverage. In theory, it keeps the protection for people with preexisting conditions while also urging people to buy insurance so they aren’t at risk of being locked or priced out of coverage.

Think of it as an attempt to achieve the same effect as the mandate, which helps provide health plans with healthy as well as sick customers so their finances work, without actually having a mandate.

The problem, according to patient advocates, is the concept isn’t foolproof. If a sick person does have a lapse in coverage, they wouldn’t have the same protections that the ACA currently provides.

“We have not yet seen a continuous coverage provision that is fair to patients,” said Dick Woodruff, the vice president for federal relations at the American Cancer Society. The group’s deputy chief medical officer testified before an important House committee last week on the issue, warning that such a policy “imposes an undue cost burden on individuals.”

Other prominent patient groups are aligned with the cancer society on the issue. Last month, along with American Diabetes Association, American Heart Association, American Lung Association, and the National Multiple Sclerosis Society, they sent a letter to Congress expressing concern about continuous coverage and their patients’ ability to reenter the market if they lose coverage.

Consumers who go without insurance for a given period of time (60 days, for example) could be denied coverage or their insurer could hike their premiums based on their health status. That, experts say, would leave patients who exit the market for unexpected reasons like losing their job in an impossible situation.

“Instead of paying a tax penalty, you would pay a penalty in terms of not being able to get coverage when you next try to come back in,” said Karen Pollitz, a senior fellow at the nonpartisan Kaiser Family Foundation. “But people lose health insurance for lots of reasons that make it difficult for people to immediately get coverage back.”

The debate is in the early stages, and many of the details within a continuous coverage provision remain unspecified. Oregon Representative Greg Walden, a Republican who chairs the House Energy and Commerce Committee, caught flak from Democrats last week for releasing an early draft bill with a section titled “Continuous Coverage Incentive.” Below the title: The world “placeholder” and a blank page.

The Kaiser Family Foundation has estimated that 27 percent of Americans between 18 and 65 have a preexisting condition, and Republicans have insisted their reforms will allow those consumers to remain in the market.

“Our goal is to make sure that patients can access care no matter how healthy or sick they may be,” an Energy and Commerce Committee spokesperson said in response to STAT’s inquiry. “This means making sure patients have protections from preexisting condition benefit exclusions as well as from underwriting based on health status. It’s only fair.”

The idea of a continuous coverage provision isn’t inherently objectionable, Woodruff said, but crafting one that lets patients who have recently become sick, lost their job, or face an unexpected new financial burden to reenter the health care market is a tall order.

“I suppose that we could be supportive of a continuous coverage provision, provided that it allowed sufficient opportunities for people who do not have insurance to buy it when they need it,” Woodruff said. “And that if, for some reason, they do lose insurance that’s beyond their control — if you get cancer and you lose your job because you’re too sick to work — those people have to be able to get back into the market without being penalized.”

Georgia Representative Tom Price, the Republican likely to be confirmed this week as secretary of Health and Human Services, is also expected to play a major role in shaping an ACA replacement. A longtime critic of the law, Price introduced a replacement bill in 2015 that would allow insurers to hike rates by 50 percent for up to three years for patients who had not maintained continuous coverage for the past 18 months.

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Douglas Holtz-Eakin, the president of the right-leaning American Action Forum, told the Energy and Commerce Committee that the Affordable Care Act’s individual mandate has been ineffective in stabilizing risk pools and suggested ways that the patient groups’ concerns could be addressed in the ACA replacement plans.

“Everyone who is currently uninsured, whether having a preexisting condition or not, would be provided a one-time open enrollment period to gain coverage so they, too, could receive the benefit,” he told the committee last week.

However, Allison Miller, a spokesperson for the American Cancer Society, said the one-time enrollment wouldn’t cut it for cancer patients.

“A one-time chance to enter the market without penalty doesn’t adequately protect people like cancer patients who may have various gaps in coverage due to the nature of their cancer, its treatment and long-term side effects, or potential secondary or recurrent cancers,” she said.

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