How to get health coverage for long COVID as pandemic benefits look ready to expire

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How to get health coverage for long COVID as pandemic benefits look ready to expire


Presenteeism is when a person is at work but can’t really function to do their job — and it’s the next epidemic threatening New York City, health experts have warned.

The cause is the rising, but hidden, burden of long COVID-19. A precise toll doesn’t exist because doctors have only been able to document long COVID cases since last October. But most studies are converging on 20-40% of adults either retaining some of their symptoms (traditional long COVID) or developing new problems weeks or months after their initial infection passes.

This spectrum of post-viral conditions is collectively known as “post-acute sequelae of SARS-CoV-2 infection” or PASC.

Already this year, the city has recorded 659,000 COVID-19 cases among people ages 18 to 64 years old — suggesting about 131,000 adults of working age have developed PASC as the city tries to fully reopen. And this number doesn’t consider the untold numbers who’ve been dealing with long COVID since America’s pandemic began in March 2020.

The impact of long COVID on the workers was one of the issues highlighted last week during WNYC’s annual health convening, where experts joined reporters to discuss the lasting scars that the pandemic is leaving on the health care system in the New York region and beyond. Topics in the two-hour session of panels included staffing shortages among the medical workforce and ways to combat the resilient overdose epidemic.

But the convening’s first session was entitled, “Should You Tell Your Employer That You Have Long Covid?”

Bosses will play a vital role as coronavirus patients seek care for lingering syndromes, according to health experts at the session and others interviewed ahead of the convening. They said health care costs could rise sharply for patients, especially as pandemic-era benefits funded by the federal government are rolled back this year.

“Employers do have an opportunity here, particularly with respect to those patients who are enrolled in insurance through their employer. They contract with these insurers,” said Maanasa Kona, an assistant research professor at Georgetown University’s Center on Health Insurance Reforms. “And they have leverage on the basis of those contracts.”

Health insurance companies can’t legally kick people off plans or keep them from signing up, thanks in part to protections under the Affordable Care Act. But cost-sharing is already leaving patients with hefty bills as they search for the specialty care they need from respiratory clinics, cardiologists and neurologists for treating malaise like brain fog and other select fields of medicine.

Employers have a stake in people’s recovery, too. A recent study, conducted in part by researchers at City University of New York, considered the productivity losses due to presenteeism. Assuming about 40% of symptomatic cases struggle with lingering fatigue, these researchers told Gothamist that they’d expect a median of $6,000 in lost productivity annually for any single person.

“That’s a substantial thing to consider, yet the conversation is not there,” Bruce Y. Lee, a public health policy expert at CUNY and executive director of the research group PHICOR, told Gothamist ahead of the convening. He was referring to how pandemic precautions have tended to focus on the immediate consequences of an infection. “Typically, all we hear about is cases, hospitalizations and deaths.”

The U.S. has historically struggled to provide health coverage for chronic diseases, such as diabetes or Alzheimer’s Disease — whether it comes to fair drug pricing or finding long-term caretakers. Alzheimer’s afflicts about 6.5 million Americans and is increasingly straining the health care system as Baby Boomers age.

Now consider that anywhere from 7.7 million to 23 million Americans could currently have long COVID, according to federal estimates. Add the potential costs of long haulers on top of rising inflation and a looming recession, and employers may get nervous.

“It’s absolutely illegal for an employer to discriminate against you because you have a long-term condition … It’s a violation of the Americans with disabilities act,” Joel Cantor, director of the Center for State Health Policy at Rutgers University, told Gothamist “The reality is depending on the employer, I’d be very circumspect.”

And it will largely be up to patients and doctors to hold the health care system accountable.

Identifying the right doctors and coping with long waits

Despite a $1.15 billion federal study called the RECOVER Initiative that’s more than a year old, officials readily admit that there still aren’t clear medical definitions for PASC or long COVID. The study’s website declares “200+ more symptoms and counting.” General signs can be difficulty breathing or difficulty concentrating, sometimes called brain fog. But severe conditions, such as heart disease and kidney failure, materialize, too.

“Over 27 months now of me being sick, I’ve seen 40 different doctors,” Karyn Bishof, president of the COVID-19 Longhauler Advocacy Project, said at the health convening. “I’ve been diagnosed with numerous health conditions that I’ll now have likely for the rest of my life.”

Bishof, who lives in Florida, caught the coronavirus in March 2020 during the early weeks of the pandemic. She said finding care for her post-viral symptoms was really hard in the beginning because doctors assumed people either get better or die.

Most medical professionals back then — and now — aren’t familiar with the concept of symptoms lasting so long after an infectious disease. Chronic Lyme Disease sufferers still struggle to get treatment, even though a nationwide survey identified major health care gaps more than a decade ago. Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), a disease possibly linked to infections, harms up to 2.5 million Americans — but most medical students don’t formally study it.

For those reasons, Bishof said long COVID patients need to be diligent when it comes to knowing the different signs of the disease and finding the right medical professionals to address it.

The journey will likely start with a family doctor or primary care physician. She describes them as the most important people for long-haulers because they’re essential to recommending specialists. Given PASC can manifest as heart disease, diabetes, stomach problems, sleeping disorders or otherwise, patients often need additional health providers to match.

“Every primary care provider in the country needs to get to a level where they can screen a patient and identify long COVID or its associated conditions,” Bishof said because delays in diagnosis will only slow down the referral to a specialist. “Not to mention current wait times, being anywhere from six months to 18 months for some of the specialists.”

She added that those wait times are only going to get worse as more people develop long COVID during the carousel of surges.

All health care insurers are generally required to make sure their providers are following network adequacy standards, wherein patients don’t have to travel unreasonable distances or wait an unreasonable amount of time to get access to care.

“There isn’t one national standard for network adequacy, and the standards tend to vary pretty widely, depending on which state you’re in, what type of insurance coverage you have,” said Kona from Georgetown University.

If a long COVID patient feels their health care is inadequate, they can typically file a complaint with their insurance plan, which must respond by law in places like New York and New Jersey. If that fails, they can escalate the issue to local officials, such as those in New Jersey’s Department of Banking & Insurance or New York’s Department of Health.

Remember “medical necessity” and the U09.9 code

Pinpointing the right doctors becomes crucial when long-haulers need to justify the “medical necessity” of their care and treatment. Health insurance plans tend to automatically pay for familiar claims — frequently used tests, treatments or procedures for common conditions. But these overseers apply more scrutiny to less common diagnoses.

“Insurance companies will sometimes disallow certain costs as not medically necessary, particularly in situations where there is that kind of gray area about medical necessity,” said Cantor from Rutgers. “That’s an ongoing challenge, particularly for folks who have multiple symptoms.”

Medical necessity is initially judged by a person’s physician, and doctors need to document the conditions correctly in order for patients to receive insurance coverage.

An essential part of this process is inputting a code specific for post-COVID disorders — U09.9 — into medical records. This code is part of an international system — curated in part by the CDC — that must be followed any health plan or health care provider using electronic records in the U.S.

The U09.9 code is relatively new — only becoming effective last October. Bishof said some medical professionals still aren’t familiar with U09.9, even though it can help justify claims for treatments. Even prescribing routine medications off-label — say, to reduce blood pressure for COVID-caused cardiovascular disease — might run afoul without this code.

“For your physician to prescribe you beta-blockers, they need that billing code for what they’re diagnosing you with,” Bishof said, adding that it can also help clarify how many people are suffering from PASC overall.

“We have research studies right now that are combing electronic health reports, trying to look for this code and identify long haulers,” she said. “I would even say if you’re a patient who sought care early on, go back to these doctors, ask them and make sure that this code is now part of your medical records.”

Even if a person’s primary doctor or specialist deems a treatment plan as necessary, a health insurance plan can still reply by saying it won’t cover all the costs.

Kona said plans try to define medically necessary treatments by following scientific evidence or relying on guidance from physician organizations. But almost nothing is known about how to treat long COVID, meaning most therapies are considered unproven.

Whether they have private insurance or a public plan like Medicaid, long COVID patients facing medical necessity denials have options to appeal. Both Cantor and Kona said the first step is filing an appeal with the insurance plan, and they said patients should ask their doctors or health care providers for help.

“[Patients] can submit any additional information from their provider and explain why they need those disputed services,” Kona said.

The appeals process will likely vary depending on what kind of coverage a person has. Cantor advised people working at big firms with employer-sponsored plans to check with their HR offices. But employees at smaller companies may need to directly contact their insurance broker or ask their employers to act as an intermediary.

“Call the insurance company, explain your situation, and ask how to do this,” Cantor said. “They’re legally obliged to disclose everything to you — all of your rights.”

If this internal appeal is also denied by the health insurance plan, long COVID patients can seek an independent review from a state regulator. New Jerseyites can request such a review by emailing ihcap@dobi.nj.gov or calling 1-888-393-1062 (or 609-777-9470). New Yorkers can do likewise by visiting the Department of Financial Services website, emailing externalappealquestions@dfs.ny.gov or calling (800) 400-8882.

Take advantage of pandemic benefits while they last

Some patients shouldn’t delay hunting down the care they need. During the pandemic, federal regulators expanded subsidies for health care coverage under the American Rescue Plan. Doing so allowed people to purchase better health care plans on their state ACA marketplaces for less money than usual. These extra benefits can help reduce the out-of-pocket costs for specialty care needed for long COVID.

Unless Congress renews this policy, these subsidies will expire by the end of the year. The health policy institute KFF estimates that 3.7 million people — mostly with middle incomes – would lose the extra benefits, and 8 million people generally enrolled in the marketplaces would see their premiums double.

“People will end up trading down to less generous plans or dropping coverage altogether because they can’t afford it,” Cantor said. “Trade down, say from a gold to a silver plan, and the out-of-pocket exposure is tremendous.”

Likewise, the end of the country’s public health emergency will eventually mark the return of “eligibility determinations” for Medicaid recipients. Before the pandemic, states had to audit Medicaid recipients every 12 months to make sure they still qualified for the federally-sponsored insurance program for low-income individuals. But these redeterminations were suspended so that people wouldn’t lose access to care.

The U.S. Health Secretary has renewed COVID’s emergency status every 90 days since January 2020. The next signature is due in mid-July, but he is supposed to give two months’ notice prior to terminating the order, so it will likely be extended. But whenever the public health emergency does end, 5 to 14 million people could be kicked off Medicaid due to the redetermination audits.

“A lot of people might end up getting pushed out of Medicaid and then potentially being pushed toward marketplace plans — where they now don’t have additional subsidies,” Kona said.



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