Tag: Long

Why long Covid could be ‘the next public health disaster’

Sam Norpel and her family. Norpel, 48, second from the right, got Covid-19 in December 2021 and hasn’t recovered. This chronic illness, known as long Covid, impacts up to 23 million Americans.

Kirstie Donohue

Sam Norpel used to present regular financial updates to C-suite executives.

Now, unpredictable bouts of broken, staccato speech make that impossible for the former e-commerce executive.

Despite being up to date with vaccines and boosters, Norpel, 48, got Covid-19 in December 2021, when the highly transmissible omicron variant was fueling record U.S. caseloads.

She never got better — and in fact, feels worse, with a range of debilitating symptoms that make it impossible to work.

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Her halting speech can be triggered by something as innocuous as cold water or cool air on the skin. Extreme noise sensitivity requires her to wear noise-canceling headphones all day. She’s also endured a low-grade migraine for nearly a year, which can flare up after prolonged screen time.

Why long Covid could be ‘the next public health disaster’

When it comes to her body and mind, “the computer is just slow,” said Norpel, who lives with her family outside Philadelphia. “Right now, for me, 48 [years old] feels like 78.”

Norpel is one of millions of Americans with long Covid, also known as long-haul Covid, post-Covid or post-acute Covid syndrome. While definitions vary, long Covid is, at its core, a chronic illness with symptoms that persist for months or years after a Covid infection.

Up to 30{bf0515afdcaddba073662ceb89fbb62b6b1bf123143c0e06b788e1946e8c353f} of Americans who get Covid-19 have developed long-haul symptoms, affecting as many as 23 million Americans, according to the U.S. Department of Health and Human Services.

Long Covid could be ‘the next public health disaster’…

The country is about to enter its fourth calendar year of the coronavirus outbreak, and new variants are expected to make for a tough winter.

Researchers think most Americans have had Covid-19 at this point.

Studies suggest subsequent infections raise the chances of an “adverse” outcome, including hospitalization and death. The virus has killed more than 1 million Americans to date, and some 2,000 more die each week, according to the Centers for Disease Control and Prevention.

Long Covid demonstrates that the virus is taking a lingering, pervasive and perhaps even more insidious toll. Medical experts have called it “the next public health disaster in the making.”

“There are just large numbers of people affected by this,” said Dr. Peter Hotez, co-director of the Center for Vaccine Development at Texas Children’s Hospital and a dean at Baylor College of Medicine.

That number will “only continue to grow” as Covid-19 continues to circulate, HHS said in a recent report.

“This could be game-changing in terms of how we do medical practice, in the same way HIV/AIDs was a game-changer,” Hotez said.

… one with a significant financial toll

But the tentacles of long Covid reach far beyond its medical impact: from the labor gap to disability benefits, life insurance, household debt, forfeit retirement savings and financial ruin.

This article is the first of a CNBC special report examining long Covid’s destructive impact on individuals, families and the U.S. economy at large.

All told, long Covid is a $3.7 trillion drag on the U.S. economy — about 17{bf0515afdcaddba073662ceb89fbb62b6b1bf123143c0e06b788e1946e8c353f} of our nation’s pre-pandemic economic output, said David Cutler, an economist at Harvard University. The aggregate cost rivals that of the Great Recession, Cutler wrote in a July report.

Cutler revised the $3.7 trillion total upward by $1.1 trillion from an initial report in October 2020, due to the “greater prevalence of long Covid than we had guessed at the time.” Even that revised estimate is conservative: It is based on the 80.5 million confirmed U.S. Covid cases at the time of the analysis, and doesn’t account for future caseloads.

Higher medical spending accounts for $528 billion of the total. But lost earnings and reduced quality of life are other sinister trickle-down effects, which respectively cost Americans $997 billion and $2.2 trillion.

“Long Covid will be around long after the pandemic subsides, impacting our communities, our health care system, our economy and the well-being of future generations,” the HHS report said.

Norpel was the household breadwinner, which allowed her husband to care for their kids. The family has been living on income from a long-term disability policy, a vestige of her old job; the funds replace just a third of her prior pay. Norpel’s husband must now juggle caretaking duties and the necessity of finding work, both for income and health insurance.

The money worries are multitude: the ability to continue funding her daughter’s college education, the odds of raiding retirement accounts or selling their home to subsist. Norpel’s 16-year old son recently wondered if he should get a job to support the family; but he doesn’t even have a driver’s license.

“All of it is just very heartbreaking,” said Norpel, adding that “long Covid changed everything.”

What is long Covid? It ‘depends on who you ask’

While there are still many unknowns about long Covid — shorthand for its scientific name “post-acute sequelae of Covid,” or PASC — what we do know so far is startling, experts say.

Anyone who’s had Covid-19 can develop the condition. People can get it regardless of the severity of their initial infection or the virus variant, according to the World Health Organization. It affects all age groups, even those who were previously fit and healthy.

Studies suggest women are at higher risk than men; one study found adult females to be twice as likely to have long-haul symptoms. People of color are also more likely to get sick due to the increased likelihood of a Covid-19 infection and less access to high-quality health care; it’s also more common in bisexual and trans people due to reduced care access and the stigma regarding their gender or sexuality, the HHS said in an October report.

New study raises serious concerns over long Covid impact

However, the medical community hasn’t arrived at an exact definition of long Covid, which complicates diagnosis and treatment.

The definition “depends on who you ask right now,” said Dr. Greg Vanichkachorn, medical director of the Mayo Clinic’s Covid Activity Rehabilitation Program.

Here are some of the points on which opinions diverge:

  • Cause: Doctors don’t yet know what causes long Covid. They have theories: Perhaps it’s an autoimmune disorder, like lupus or rheumatoid arthritis, whereby the virus is gone but the immune system remains active, attacking healthy cells by mistake; or maybe small blood clots develop in the brain, too small to cause a stroke but big enough to trigger neurologic issues.
  • Key symptoms: Long Covid has been linked to more than 200 symptoms, according to The Rockefeller Foundation. Shortness of breath, fatigue, and sleep disorders or insomnia are the most common symptoms, according to a recent global meta-analysis published in the Journal of the American Medical Association, a peer-reviewed journal. Others include anxiety, depression, body aches, headache, heart palpitations and “brain fog” — which describes challenges associated with cognition, like thinking, concentration, communication, comprehension, memory and motor function. Some sufferers have organ damage, to the heart, lungs, kidneys, skin and brain.
  • Duration: There’s no consistent definition of how long symptoms must persist for someone to be considered a long Covid patient. For example, the CDC says a person has long-haul symptoms if they persist beyond (or start after) one month from an initial Covid-19 infection. The WHO generally uses a three-month barometer. Different health clinics may use others still.

What experts do know is that for some, long Covid symptoms can last months or even years. About 15{bf0515afdcaddba073662ceb89fbb62b6b1bf123143c0e06b788e1946e8c353f} of people whose ailments persist three months after infection continued to experience symptoms at least 12 months after infection, according to the meta-analysis.

Meredith Hurst, a paralegal, is one of those people. Hurst caught Covid in November 2020. She was diagnosed with long Covid in December 2021; now, two years after the initial infection, she still hasn’t recovered.

The 42-year-old, who lives in Wilmington, Delaware, is unable to work and is in the process of filing for Social Security Disability Insurance — for which qualification is famously stringent. Brain fog, migraines and fatigue require her to complete the application in pieces; all of her progress, which had been saved in a draft, was recently deleted because too many days had elapsed.  

Meanwhile, Hurst is struggling to make ends meet. In addition to Medicaid health benefits, she receives public assistance via food stamps. Her credit cards are “getting maxed out.”

“I don’t know if it’s for the rest of my life or not,” Hurst said of feeling long Covid symptoms.

“It will probably continue this way for me until there is a test, a medication, more research, more education for the public, for doctors,” she added. “This is going to be my experience for a while”

“It doesn’t mean forever,” Hurst said. “But for right now, this is my reality.”

‘All sorts of testing’ to try for a diagnosis

The formal diagnosis code for long Covid used by researchers and physicians is only a year old.

The CDC authorized the code (U09.9) in October 2021. An official diagnosis allows patients to more easily access long Covid-related treatments, file for disability insurance and request accommodations at work, according to the HHS report.

Yet its nebulous nature means there isn’t yet a definitive, yes-or-no lab test for it.

“There’s no diagnostic test,” said Dr. Jeff Parsonnet, an infectious disease physician who started the Post-Acute COVID Syndrome clinic at Dartmouth Hitchcock Medical Center. “It’s really a clinical diagnosis.”

Sometimes that process is straightforward: a confirmed, positive Covid-19 test result, with enough time passing after initial infection and persistent symptoms consistent with hundreds of other long Covid patients may be adequate, Vanichkachorn of the Mayo Clinic said.

But often, by the time Parsonnet sees patients at the Post-Acute COVID Syndrome clinic, they’ve had “all sorts of testing” from a primary care doctor or specialists. That might include pulmonary function tests or chest X-rays to look for heart or lung conditions, for example, magnetic resonance imaging (MRI) to identify brain inflammation or a “tilt table” test to evaluate a possible autonomic disorder.

Frustratingly for patients, such testing often comes back negative, according to medical experts, even as it adds to their financial burden.   

“In many cases, the diagnosis is [long Covid] because there’s nothing else to explain the condition,” said Alice Burns, associate director of the Program on Medicaid and the Uninsured at health care nonprofit The Henry J. Kaiser Family Foundation. “It’s the diagnosis when all other diagnoses have been ruled out.”

There are a lot of physicians or care providers who are reluctant to apply a label they see as defined as everything but the kitchen sink.

Diana Güthe

founder of Survivor Corps

That can make some physicians unwilling to entertain long Covid as a reason for health complications.

“There are a lot of physicians or care providers who are reluctant to apply a label they see as defined as everything but the kitchen sink,” said Diana Güthe, founder of Survivor Corps, referring to the litany of symptoms. Survivor Corps is a grassroots Covid advocacy group with about 250,000 members; Güthe herself had and recovered from long Covid.

Donna Pohl, 56, met with a neuromuscular specialist in mid-November to help treat nerve damage that resulted from long Covid. The visit didn’t go well.

“[The specialist] said, ‘Everyone wants to blame Covid,'” said Pohl, who lives in Bettendorf, Iowa, and was diagnosed with long Covid last December. “We are sick, not stupid or crazy.”

People — including family and friends — often write off symptoms as “byproducts of anxiety and depression, or even worse, laziness and an excuse not to work,” the HHS report said.

Neurologists would see Norpel twitch and instead focus just on her migraines, she recalled. One told her to stop reading literature on long Covid when she mentioned the disease during an appointment. “It was like Dr. ‘Mansplaining,'” she said.

She eventually had a consultation in August at the Mayo Clinic, where she was told: “We believe you — you have long Covid.”

“I started crying when the doctors spoke to me,” Norpel said.

Despite long Covid risks, employees consider cutting health benefits

Tech startup company Fast Chief Communications Officer Jason Alderman (R) talks with an employee on the first day working in the office on March 24, 2021 in San Francisco, California.

Justin Sullivan | Getty Images

Inflation has stretched household budgets near their limit. As a result, most people have reined in discretionary spending, even when it comes to health and wellness.

But just as many Americans want to scale back, U.S. health officials are expecting another pandemic wave this winter and new research underscores the importance of having comprehensive medical benefits.

Although the Biden administration is looking at ending the public health emergency over the next few months, many who get sick but survive Covid suffer from enduring health problems, studies show. And currently, as many as 23 million Americans have what’s considered long Covid, according to recent estimates from the U.S. Department of Health and Human Services.

With open enrollment season in full swing, this is an opportunity to reevaluate your coverage, said Gary Claxton, senior vice president at the Kaiser Family Foundation, a nonprofit organization focused on national health issues.

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Employees spend 18 minutes, on average, reviewing their benefit selections during open enrollment, according to Rob Grubka, CEO of Health Solutions for Voya Financial. “They spend more time deciding what to watch on Netflix.”

But this year brings added uncertainty, he said. “Between rising inflation, Covid and long Covid, we underestimate how different things may look in the future.”

At the same time, more than a quarter of employees have postponed wellness visits and screenings and consider cost the most important factor in determining their benefit choices for next year, according to benefits platform Elevate. 

Employees are making choices to keep themselves afloat, said Brian Cosgray, Elevate’s CEO and co-founder. Unfortunately, some are engaging in trade-offs — like foregoing needed medical care — that could cause problems down the road, he added.

To balance your overall health and the long-term risks of illness as well as financial constraints, Claxton suggests reassessing your employer-sponsored health insurance during open enrollment, which typically runs through early December.

Almost 159 million Americans rely on employer-sponsored health insurance coverage. Here are four key considerations with open enrollment season underway:

1. Health insurance plans

For starters, consider what your health coverage costs you.

Annual family premiums for employer-sponsored health insurance — the amount it costs each year for insurance, often divided into 12 monthly payments — average $22,463 this year, up slightly from a year ago, according to the Kaiser Family Foundation.

On average, workers contribute $6,106 toward the cost of a family premium, with employers pick up the rest.

However, more workers have a deductible — the amount you pay before insurance kicks in — and that deductible is also rising. In 2022, the average single deductible was $1,763, more than double what it was a decade ago.

But “don’t just look at the monthly cost of your health insurance,” Cosgray advised. “Most employers offer a few health-plan options,” he added, such as a high-deductible plan with a health savings account or a more traditional PPO.

“If you expect your health-care costs to be low for the coming year, a high deductible health-care plan paired with an HSA could be a good way to save money,” he said. “However, if you have chronic health conditions in your household and typically hit your deductible, a traditional plan paired with [a flexible spending account] may save you more over the course of a year, even if the plan’s monthly cost is higher,” Cosgray said.

“If you are going to take the high-deductible plan, you have to be able to pay the deductible if someone gets sick,” Claxton added. “The plan maybe cheaper but what if you can’t afford to use it?” Most people can’t even afford a $500 expense, he noted. “If you go to the hospital the likelihood that your out-of-pocket costs are at least $500 are pretty high.”

There are often employer-offered resources designed to help pick between benefit offerings, which can include webinars and dedicated benefits professionals. 

“Many health plans now have great tools to help you manage your choices based on what you anticipate your health-care costs to be,” advised Thomas Belmont, health and benefits practice leader at Gallagher.

“That will help guide you.”

2. Health savings accounts

One way to help with health-care costs is to use tax-advantaged accounts for medical expenses — specifically, health savings accounts or flexible spending accounts.

In both cases, you use pretax money to cover out-of-pocket expenses, including doctor visits and prescription drugs.

To be able to use an HSA, you need to be enrolled in a high-deductible health plan, or HDHP. Contributions then grow on a tax-free basis, and any money you don’t use can be rolled over year to year.

“The opportunity to save and save efficiently is there,” Grubka said.

Why long Covid could be ‘the next public health disaster’

For 2023, employees and employers can contribute a total of up to $3,850 for individual coverage and up to $7,750 for family coverage, with an additional $1,000 as a catch-up contribution for those 55 and older.

Health FSAs have lower contribution limits — $3,050 for 2023, but you also don’t need to have a high-deductible plan in order to be eligible — in fact, you don’t need health coverage at all to sign up for one. Although, you may have to use the money by year-end or you lose it, with some exceptions.

3. Life insurance and disability insurance policies

To be sure, the pandemic brought a greater awareness of financial risks associated with a critical illness.

Employer-issued life insurance policies typically amount to a year’s worth of salary, often less, but that may be a fraction of what you need to protect young children or other dependents.

Consider what’s the right amount for you and your family, then weigh whether you want to buy additional coverage, or supplemental insurance, through your workplace group plan or shop for your own individual term life insurance policy, a move many advisors recommend, although this may also require more medical information, including a physical exam and blood work.

The same goes for disability insurance, which can help replace a portion of your paycheck if you get sick and are unable to work.

There are two basic kinds: Short-term disability generally replaces 60{bf0515afdcaddba073662ceb89fbb62b6b1bf123143c0e06b788e1946e8c353f} to 70{bf0515afdcaddba073662ceb89fbb62b6b1bf123143c0e06b788e1946e8c353f} of your base salary and premiums are often paid by your employer. Long-term disability, which ordinarily kicks in after three months to six months, typically replaces 40{bf0515afdcaddba073662ceb89fbb62b6b1bf123143c0e06b788e1946e8c353f} to 60{bf0515afdcaddba073662ceb89fbb62b6b1bf123143c0e06b788e1946e8c353f} of your income.

Other voluntary benefits offered through an employer can provide additional protection, including hospital indemnity insurance, critical illness coverage and accident insurance.

“As we go into next year and the additional financial pressures, make sure you are protecting your income,” Belmont said.

4. Wellness benefits

As a result of the pandemic, many more companies have expanded wellness offerings among the health-care coverage options to help employees deal with work-life stressors and personal issues.

For example, more than a quarter of large employers added mental health providers this year — either in physical offices or virtually through teletherapy — to their plan’s networks to expand access, according to the Kaiser Family Foundation.

“We’ve got a real crisis from an emotional well-being perspective,” Belmont said.

Employees should take full advantage of the services employers provide, often at no cost, also including financial coaching, emergency savings support, stress management classes and backup child care, he advised.

With rising prices causing more Americans to feel financially strained, “one of the most underutilized benefits is financial counseling,” Belmont said.

People With Long Covid Face Barriers to Government Disability Benefits

When Josephine Cabrera Taveras was contaminated with covid-19 in spring 2020, she didn’t anticipate that the virus would knock her out of perform for two decades and set her loved ones at hazard for eviction.

Taveras, a mom of two in Brooklyn, New York, mentioned her bout with lengthy covid has meant working with debilitating indicators, ranging from respiration problems to arthritis, that have prevented her from returning to her task as a nanny. Not able to perform — and without the need of entry to Social Stability Incapacity Coverage or other authorities help — Taveras and her relatives confront a looming pile of charges.

“We are in the midst of probably getting rid of our condominium because we’re behind on hire,” stated Taveras, 32. Her software for Social Stability incapacity aid, submitted very last tumble, was turned down, but she is captivating.

Like quite a few other individuals with extended covid, Taveras has fallen via the cracks of a technique that was time-consuming and complicated to navigate even right before the covid pandemic. Persons are facing decades-lengthy wait around instances, inadequate authorized aid, and a lack of clear advice on how to show they are disabled — compounded by the problems of a clinical procedure that does not have a uniform process for diagnosing long covid, in accordance to wellness gurus and disability attorneys.

The Biden administration promised guidance to individuals with long covid, but affected person advocates say lots of are battling to get govt enable.

The Centers for Ailment Manage and Avoidance defines very long covid broadly, as a “range of ongoing overall health problems” that can last “weeks, months, or longer.” This description incorporates people, like Taveras, who simply cannot get the job done, as properly as individuals with much less intense symptoms, such as a extensive-term decline of smell.

The Social Security Administration has recognized about 40,000 disability claims that “include indication of a covid an infection at some position,” spokesperson Nicole Tiggemann mentioned. How a lot of people with prolonged covid are amid the much more than 1 million disability claims awaiting processing by Social Security is unknown.

In latest months, about 5{bf0515afdcaddba073662ceb89fbb62b6b1bf123143c0e06b788e1946e8c353f} of new disability promises filed by Allsup, an Illinois-primarily based firm that aids persons use for Social Security, involved men and women dealing with covid, said T.J. Geist, a director at the company. Other companies report equivalent figures.

The extensive waits for incapacity assistance usually finish in denial, in aspect because prolonged covid people don’t have the significant healthcare proof that federal officers require, Geist said. There is no regular course of action for diagnosing long covid. Equally, Social Security “has however to give particular assistance on how to assess covid claims” for the governing administration officials who assessment applications, he mentioned.

A modern report from the Brookings Establishment estimates that 2 million to 4 million folks are out of work due to the fact of extended covid. A examine revealed in September by the Nationwide Bureau of Economic Investigate places the quantity at 500,000.

Advocates suggest that a lot of men and women with extensive covid have nonetheless to recognize their need for authorities gains and could start off implementing soon.

“I did not recognize that I was disabled for 4 a long time since my capability would fluctuate so substantially,” explained Alison Sbrana, a individual-advocate with the prolonged covid support group Human body Politic. She has a long-term sickness whose signs and symptoms are equivalent to prolonged covid’s in several situations and has been given Social Safety disability payments for a number of years.

“If you apply my timeline to individuals with long covid, even people who obtained unwell in early 2020, we’re not going to know the entire extent of their ability to function or not till 2024,” she claimed.

In July 2021, the Office of Overall health and Human Services formally acknowledged long covid as a disability. Increasing on the recognition, the section and the White Household printed a report in August 2022 that summarizes the “services and supports” offered for individuals with prolonged covid and some others who have experienced prolonged-term impacts from the pandemic.

But accessing help is not as basic as White Dwelling announcements may possibly counsel. First, the July 2021 guidance regarded long covid beneath the Americans with Disabilities Act but did not extend to the Social Safety Administration, which runs advantage systems.

Below the ADA, extended covid sufferers who can even now perform might ask their employers for lodging, this kind of as a house to relaxation or a additional flexible timetable, said Juliana Reno, a New York law firm who specializes in employee added benefits. Social Stability, having said that, has much more stringent standards: To acquire incapacity insurance policies, persons must confirm their prolonged covid signs or symptoms are so debilitating that they can’t get the job done.

“The software procedure is really demanding, incredibly confusing for people,” Sbrana explained. “It also completely depends on you possessing this considerable breadcrumb trail of health care proof.”

Most purposes are denied in the to start with spherical, according to Sbrana and other advocates. Individuals commonly attraction the selection, often top to a 2nd denial. At that issue, they can ask for a court docket listening to. The entire process can consider a calendar year or extra and commonly involves authorized help.

The pandemic prolonged these wait around situations, as Social Protection workplaces shut and did not rapidly shift to remote operations. Furthermore, typical indicators these as brain fog can make filling out on-line programs or shelling out several hours on the phone with officers difficult.

Lengthy covid patients who had been hospitalized with serious indicators can submit paperwork from those people clinic stays and are extra very likely to obtain advantages, Geist mentioned. But for the persons who experienced gentle scenarios at first, or who have “invisible-type symptoms” like brain fog and tiredness, Geist mentioned, documentation is extra challenging. Obtaining a health practitioner who understands the problem and can indicator off on indications may perhaps get months.

Amanda Martin, a lengthy covid individual and advocate, is one particular of all those lost employees. Martin bought covid in April 2020 when working as a subcontractor for the U.S. Navy and dropped that occupation when they were unable to get well swiftly.

At to start with, unemployment rewards delivered guidance, but Martin’s signs or symptoms — like intense fatigue and mind fog — continued. Extra than two yrs following the first infection, Martin is still “on bed rest 90{bf0515afdcaddba073662ceb89fbb62b6b1bf123143c0e06b788e1946e8c353f} of the time,” they explained. Martin gets meals stamps and Medicaid but doesn’t have support having to pay for other necessities, this sort of as fuel. Their application for federal incapacity advantages has been denied twice.

“I am now a 12 months into the [application] method I have eight to 11 months remaining,” Martin explained. “I have $50 in my price savings account.”

Lots of individuals with lengthy covid do not have the monetary means to employ the service of a law firm — or access to a medical professional who can help with their documentation, which helps make the scenario even tougher.

Patient advocacy organizations are pushing for a a lot more efficient software course of action, specific steerage for officials who consider very long covid conditions, and more rapidly eligibility for Medicare coverage just after a incapacity software is approved. (The regular wait is two years.)

The corporations also provide as guidance groups for people today with lengthy covid, sharing resources and delivering reassurance that they are not alone. Some organizations, these kinds of as the nonprofit Blooming Magnolia, even obtain resources for immediate distribution to persons with very long covid. But clients say these endeavours don’t appear shut to the scale of funding wanted.

Taveras, the Brooklyn mom, claimed she is familiar with quite a few other folks who are grappling with very similar concerns. “We’re trying to get support from the authorities, and we’re not receiving it,” she explained. Taveras established up a GoFundMe web site to request support for her family.

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