How to get COVID treatment for a long time in NY and NJ

Long COVID is a disappointment. Even mild coronavirus infections lead to weeks and months of lingering symptoms such as loss of smell, confusion due to mental fog and fatigue.

But serious consequences, such as heart trouble and kidney disease, appear, sometimes long after people have recovered. Vaccines appear to mitigate some of the adverse effects, but large-scale studies have been found in inoculated people with “post-acute sequelae of SARS-CoV-2 infection” or PASC.

This is precarious for the economy, given that 20-40% of adults could suffer the fallout from COVID in the long term. Health plans and employers could respond by ensuring their employees receive comprehensive care, but that could be expensive, given that many long haulers need to see specialist doctors.

Researchers from the City University of New York predict that the median case of symptomatic COVID could result in a loss of productivity of $6,000 over the course of a year. So, for local employees who don’t know how to get care or navigate insurance, here’s a simple guide.

This report is also featured in a recent Gothamist article on the impact of long COVID on the workforce.

Consult your attending physician. Ask a specialist.

Dealing with COVID and PASC for a long time remains difficult because the conditions express themselves in so many different ways. An analogy would be brain cancer. There are over 120 types of brain tumors and accurate treatment can be hampered without a quick identification of what is going on inside the body.

The RECOVER initiative, a $1.15 billion federal study of long COVID and PASC launched in the spring of 2022, says there are “200+ symptoms and counting.”

Karyn Bishof, chair of the COVID-19 Longhauler Advocacy Project, said patients need to be diligent when it comes to knowing the different signs of the disease and finding the right medical professionals to deal with it.

“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 diagnostic delays will only slow referral to a specialist.

NYC Health + Hospitals has set up an AfterCare Resource Center, where people can find information about getting care through the city’s public health care system. NYU Langone and Mount Sinai also operate lengthy COVID treatment centers, and a large list of facilities exists for New Jersey.

Current wait times for specialists can be up to 18 months, Bishof said, so come early.

If a long COVID patient feels they are waiting too long, they can usually file a complaint with the provider, who 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 at the New Jersey Department of Banking and Insurance or the New York Department of Health.

Make sure your doctor uses code U09.9

Long haulers, like many people with chronic conditions, will likely face the challenge at some point in their care of proving their “medical necessity.” No specific treatments have been approved to directly treat long COVID – and its impact on organs like the heart, lungs and nervous system. This is because the long studies of COVID are mostly in their early stages.

A chicken-egg scenario often arises with getting health plans to cover treatment: Doctors can try drugs or therapies known to help those organs, but insurance companies want proof that it can work. .

“Insurance companies will sometimes disallow certain costs as not medically necessary, especially in situations where there’s this kind of gray area about medical necessity,” said Joel Cantor, director of the University’s Center for State Health Policy. Rutgers, to Gothamist. “It’s an ongoing challenge, especially for people with multiple symptoms.”

Medical necessity is initially judged by a person’s physician, and physicians must properly document conditions for patients to receive insurance coverage.

A critical part of this process is entering a code specific to post-COVID disorders – U09.9 – into medical records. This code is part of an international system — organized in part by the CDC — that must be used by any health plan or health care provider using electronic records in the United States.

The U09.9 code only came into effect last October, and Bishof said some medical professionals are still unaware of it, even though it can help justify treatment requests. Even getting a prescription for routine medications related to symptoms or illness caused by COVID can be difficult without this code.

If you are refused tests or treatment, appeal

Even if a long-time COVID patient’s primary physician or specialist considers a treatment plan a medical necessity, health insurance providers can still deny the request.

If that happens, Maanasa Kona, assistant research professor at Georgetown University’s Center for Health Insurance Reforms, said patients can submit additional information to substantiate their need for the disputed services.

Kona said insurance plans use scientific evidence or advice from physician organizations to define what treatments are needed. But so little is known about how to treat long COVID that most therapies would be considered unproven.

“Call the insurance company, explain your situation and ask how to proceed,” Cantor said. “They are legally obligated to reveal everything to you – all your rights.”

Both Cantor and Kona point out that longtime COVID patients facing denials of medical necessity have options for appealing. This applies to people with private insurance or a public plan like Medicaid. They say to file an appeal with the insurance plan first and seek help from doctors or health care providers.

The appeal process will likely vary depending on coverage. Cantor said people working at large companies with employer-sponsored plans to work with their human resources department. Small business employees may need to contact their insurance broker directly or ask their employer to act as an intermediary.

If an internal appeal is also denied by Medicare, long-term COVID patients can seek an independent review with a state regulatory agency. New Jersey residents can request such a review by emailing [email protected] or calling 1-888-393-1062 (or 609-777-9470). New Yorkers can do the same by visiting the Department of Financial Services website, emailing [email protected], or calling (800) 400-8882.

Some options disappear

Patients should be aware that major pandemic-era subsidies that help reduce out-of-pocket health care costs are at risk of ending. Thus, patients with long COVID symptoms should not delay in seeking treatment.

The U.S. bailout, ratified in March 2021, allowed people to buy better health care plans in their state’s ACA marketplaces. But these grants will expire by the end of the year unless they are renewed. The KFF Health Policy Institute estimates that 3.7 million people would lose additional benefits and many more who are signed up to the markets would see their premiums double.

Likewise, in the coming months, millions of people will likely lose access to Medicaid, the federal and state health plan for people on limited incomes. Prior to COVID-19, states were required to conduct annual audits to ensure Medicaid enrollees were still eligible for benefits. But these “eligibility determinations” have been halted during the pandemic. Kicking people out of healthcare as a deadly virus spreads could put many more at risk.

Eligibility determinations will revert if the country’s public health emergency is declared over by the U.S. Secretary of Health — a decision they’ve made every 90 days since January 2020. The next signing is expected mid- July, but a renewal is planned.

Health policy experts predict that 5 million to 14 million people will be deemed ineligible for Medicaid each time the ruling goes the other way.

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