Covid NJ: “Long-Hauler” Patients Worry Over Health Coverage and Costs



In late July, the Centers For Disease Control (CDC) reported that 35% of symptomatic adults who had tested positive for COVID-19 said they had not returned to their usual state of health two to three weeks after their tests. Among those ages 18-34, 1 in 5 hadn’t returned to their normal states of health. There appears to be no data yet on numbers of people experiencing serious symptoms over longer periods of time or detailed information about their circumstances. Complicating the data collection is that many of them, even those with debilitating symptoms, were never hospitalized.

Long-term COVID-19 raises several policy issues. For people affected, none is more urgent than the threat of losing their health insurance.

The ACA, which passed in 2010, barred health insurers from denying coverage to people with serious or chronic health conditions prior to enrollment, adding significant surcharges to their premiums, curtailing their benefits or imposing extended waiting periods on them. Such protections would vanish if the Supreme Court invalidates the ACA.

The court is scheduled to hear arguments in the case next month, possibly with a new, decisive, Trump-nominated justice on the bench. Without the ACA’s protections, people who had a positive test for COVID-19 could be denied coverage. Elimination of the ACA also might scrap the Medicaid expansion that was part of the law. That alone could deprive more than 12 million low-income, adult Americans, some of them no doubt long-haulers, of health insurance coverage.

Without the ACA’s protections, people who had a positive test for COVID-19 could be denied coverage. More than 7.5 million cases have been reported in the United States. Because the virus has been linked to damage to the heart, lungs and brain, a positive COVID-19 test could be used to argue that it as a patient’s preexisting condition — to refuse claims to a patient who later developed a disease related to one of those organs.

Even those with negative tests could get caught in the same net, according to a paper published late last month by the Kaiser Family Foundation. The paper notes, for example, that rideshare drivers who get tested because they worry they have been exposed could be refused coverage if an insurer determines that those seeking tests have higher odds of infection.

Apart from ensuring that long haulers can get health insurance, Diana Berrent, founder of Survivor Corps, a grassroots organization connecting those who have been infected with COVID-19, believes policymakers need to ensure that COVID-19 patients will not be barred from receiving disability benefits. Many, such as Ceresa and Wu, will not return to the workforce anytime soon.

“Disability wasn’t meant for people when they’re 30 or 40, but that’s what we are going to be facing,” Berrent says.

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