Since early in the pandemic, people with long COVID have faced challenges in applying for disability benefits, including from their employers, insurance providers and the U.S. Social Security Administration. Applications often take a long time and are denied even for people who clearly have debilitating symptoms, leading to years-long, arduous appeals processes. The same has been true decades prior to 2020 for people with other infection-associated chronic diseases.

To learn more about the disability insurance system, Betsy Ladyzhets spoke to Barbara Comerford, a longtime disability lawyer based in New Jersey who specializes in these cases. Comerford has represented people with myalgic encephalomyelitis (ME, also known as chronic fatigue syndrome or CFS) for more than 30 years, including high-profile cases like that of journalist Brian Vastag.

Comerford discussed how the process works, her advice for putting together applications and appeals, how long COVID has impacted her practice, and more. This interview has been lightly edited and condensed for clarity.

Barbara Comerford: Should we focus on disability insurance, or do you want to focus on Social Security disability, or both?

Betsy Ladyzhets: Both, because people (with long COVID) are applying for both.

BC:  Right. And often, people think they should only apply for one, (but they should apply for both.)

Most of the disability plans that people have are often through their employer. Those plans are known as ERISA plans, referring to Employee Retirement Income Security Act. It was created in the 1970s. … Congress created this regulatory scheme and then immediately created a zillion loopholes that corporations can drive a truck through. Later, ERISA covered all employee benefits in general.

Insurance companies wound up selling policies to corporations saying, “You can get the best people if you offer incentives.” And what’s a better incentive than, if someone gets sick, they can collect a substantial percentage of their salary until full retirement age? These are the sorts of perks that … People think, “If something happens to me, I’ll be protected.” The promise of these policies is that they will give people, usually, between 50% and 80% of their pre-disability income if they satisfy the requirements. Well, that’s a big if.

I’ve been doing this for 38 years. And I can tell you that 38 years ago, these (disability claims) were not problem cases. I used to do them for free for my litigation clients … But over the years, and really starting after 2001 with Sept. 11, all hell broke loose. They (insurance companies) began to get very aggressive. Every time there is an economic downfall, whatever it is, they get extremely aggressive. So you can imagine, with the onset of the pandemic, they knew what was coming.

I did, for many years, advocacy for ME/CFS cases. I represented thousands of people … A lot of my colleagues say, “Long COVID Social Security cases are almost impossible” because they don’t know what to do with them. My office hasn’t found that to be the case. I think the difference is, you have to document these cases with as much objective documentation of symptoms that people have … Get neuropsych testing, cardiopulmonary exercise testing and other tests.

I started doing webinars and seminars (about disability benefit applications) in 2020 because I knew this was coming. At that point, they weren’t calling it long COVID, they were just saying, some people with COVID weren’t getting better. But I knew it was going to turn into another ME/CFS disaster.

BL: How have you found the rise of long COVID has impacted your practice? Do you find you’re more in demand now?

BC: We’ve always had a high volume of cases. Quite a few of them were ME/CFS cases. We did a case, Vastag v. Prudential, in 2018. Brian Vastag, who was a science writer for The Washington Post, was my client, and I could not get over how aggressively Prudential was just dismissing him because it was an ME/CFS case.

And the same is happening with long COVID. We do cases all over the country on long COVID and ME/CFS. It’s my livelihood, so it’s important for me, but it also makes me a little crazy that people get treated the way they do and that they have to hire people like me.

One of the things that people get upset about is that they have to spend money to medically document their symptoms. And worse than that … I see these long COVID clinics, with doctors who are completely ignorant on long COVID, who surreptitiously write notes in the chart that they think it’s a psychiatric case. I don’t know how familiar you are with this.

BL: Unfortunately, I’m very familiar.

BC: It’s awful. Not only is it really hard on my clients …  it triggers them to read things that might not be what they said or might not be pleasant. And the number of times that I have seen that and it has sabotaged cases! I have to reconstruct the cases and have the clients contact the clinic (and get them to make corrections).

Mental/nervous limitations exist in all of these (insurance) policies … They can limit someone’s payments to two years if the case is a psychiatric case or mental/nervous limitation with a DSM diagnosis. 

BL: I wanted to ask also — there’s been a lot of research on long COVID at this point, and there was a report this summer from the National Academies specifically in response to a request from the Social Security Administration about long COVID as a disability, in which they found that this disease can result in inability to work, poor quality of life, all that stuff. Have you seen that report, or other research, like the growing body of research on these diseases, have an impact?

BC: I was asked to comment on that (report). Part of the problem with Social Security’s initiatives in this regard is that every Social Security case goes through what they call “sequential evaluation process.” You have to go through five steps to determine whether or not someone’s disabled. And among those steps is (matching people to a “medical listing of impairments,” but the list doesn’t include major symptoms for ME/CFS and similar diseases).

Years ago, there was an ME/CFS ruling called 99-2p. It offered guidelines (for ME/CFS cases that don’t fit the typical Social Security process). After that, I was asked to present to the national association of Social Security judges, there were 500 judges in the audience. And I asked, “By show of hands, how many of you are familiar with 99-2p?” Two hands went up.

Despite the guidelines, in practice, (the judges aren’t familiar with these diseases). Until there is a time when we can come up with a firm diagnostic criteria for long COVID, and we can say, “This is what you have to document for this illness.” … And it can’t just be a positive COVID test because many people got sick before testing was prevalent or they got sick after people stopped documenting that they were positive.

The other problem for long COVID cases is it’s not like cancer or a broken leg or herniated disc or something that people are accustomed to. Those people are not told they’re crazy. Those people are not told they’re imagining it. Those people are not told, “Well, we just don’t buy it.” This is what happens with (long COVID) and ME/CFS. The psych component that they try to pigeonhole these cases into is really a master stroke by the insurance industry that spends billions of dollars trying to persuade people that anyone who files for these benefits is a crook or fraud.

BL: It’s infuriating, especially when you see how deeply people’s quality of life is impacted by these diseases.

BC: Yes, every part of their life is impacted.

BL: I see what you’re saying about needing diagnostic criteria. In this time where we don’t have that yet, what would you want to see the Social Security Administration or other government agencies do to make it easier for all these people who are applying for benefits with long COVID and ME/CFS?

BC: They should (reevaluate) the sequential evaluation process, which has been there forever, and look at medically determinable impairment in the context of long COVID and ME/CFS. These diseases can be documented by things like neuropsych testing.

I’ll quickly go through the five-step sequential evaluation process. The first step is, “Is the person engaged in substantial gainful activity?” That is something you can do predictably, something that will last at least 12 months, and something that leads to gainful work, where you get paid and you can report for a job either part-time or full-time. In long COVID cases … you have to document that this person is not engaged in substantial gainful activity because they don’t know tomorrow if they’re going to be able to get up and get out of bed and take a shower, never mind report for work.

If you satisfy step one, they go to step two. There, they ask, “Do you have the ability, in light of your disability, to perform basic work-related activity?” Sitting, standing, reaching, pushing, pulling, reading, concentrating, things of that nature. And, “Does the disability negatively impact your ability to do these things?” (You need medical evidence, which can come from) a physician’s evaluation from a long COVID clinic, for example.

If you have that, you go to step three, which is where that horrible “medically determinable impairment” crap comes in. There isn’t (a specific listing) yet for long COVID, although they’re talking about it. Frankly, we’re still waiting for them to do one for ME/CFS, so I’m not holding my breath. That’s the only step in the process where, if they don’t satisfy it, you can still move on to the next step.

The fourth step is, “Is this person capable of performing the work that they performed for the last five years?” Until June of this year, it was the last 15 years … So we go through each job they had, all their symptoms and limitations and why they can’t do (the job anymore). If we document successfully that they can’t perform their past relevant work for the last five years as a result of their disability, we can then go to step five.

Step five, the burden shifts to the Social Security Administration. Social Security has to document that, in light of a person’s age, education and work experience, that there is no work in the national economy that they could perform. (To do this), Social Security has a big graph called the “medical vocational guidelines.” And essentially, the younger you are, the more skills you have, the more education you have, and the more skills that are transferable, generally you are found not disabled. But the graph is not supposed to be used for cases that involve what we call non-exertional and exertional complaints together. Pain, fatigue, things of that nature are all part of the non-exertional limitation.

That is how we lift ME/CFS and long COVID cases out of that graph. Despite the fact that many of our clients are very young, many of them are highly educated, many of them have developed skills that are not only transferable, but are also in high demand in the national economy — (we say that) because they can’t predictably perform sustained work of any kind, the grid should not be used to find them not disabled. But with all of this, every one of these cases, medical documentation of limitations is crucial. I can’t emphasize that enough.

BL: I know a lot of people in the long COVID community, they’ve already sent in their applications, and then it gets denied, and then they have to appeal. What is that process like, and how would you suggest people go about finding someone like you?

BC: It’s really important to do some research. You want to know if the doctor or attorney you’re dealing with has experience in these cases … I do (webinars and one-on-one education) for lawyers all the time because I’d rather them hear what has to be done and understand what happens if they don’t do it.

If I’m giving people advice on appeals … If it’s coming from a United States employer, you’re going to be governed by ERISA. That’s important because people might file a claim without knowing the exact company policy. Despite the fact that federal regulations require employers to give that information to employees, when someone gets sick and files a (short-term) disability claim, they are immediately cut off from the employee benefits portal (that has all the exact policy information). So then I’ve got to write a letter to the employers and fight to get that information.

You can’t even get discovery in these cases … Sometimes they will award benefits, and then six months in they’ll say, “We no longer believe you’re disabled.” Under ERISA, (employers and insurance companies) get all the advantages.

BL: It seems like people should know, if you’re filing against an employer, to save that policy information before you lose access to it. 

BC: When you get the notice of a denial, you can request a complete copy of the administrative record. You are entitled to see everything that the insurance company had on the case, and under federal regulations, they have 30 days to produce it.

And then you have 180 days to appeal that (denial). People say that’s a long time. It’s really not. Because you’ve got to go through thousands of pages of documents. You’ve got to document where they abuse their discretion. It’s not enough to have medical evidence … (The standard you have to push back on is that) the insurance company or the employer has a “reason” to deny the claim.

The lawyer’s job or the claimant’s job is to show all the examples they found in the administrative record that show (mistakes or poor judgment on the part of the insurance company or employer) … Sometimes, you will see reports of experts that they’ve retained to review the case, and the expert will say, “I think it’s a payable claim.” And then the next thing you find is them looking for another doctor who’s a little more receptive to their suggestions. If we see they’ve ignored the opinion of one of their experts, that’s an example of abuse of discretion and arbitrary, capricious conduct. Cherry-picking the evidence is another thing you often see in these cases.

BL: So it’s not just sending your own medical records, you have to show that the company has messed up.

BC: The insurance company or the employer, whoever is paying, you have to show that they abused their discretion.

BL: Is there anything else, any other advice or resources you would give people?

BC: This is really important. If it’s an ERISA case and they do not get that appeal in within 180 days, they’re foreclosed from pursuing it any further … (It’s a big mistake) if you blow those time deadlines.

This article was originally published by The Sick Times, a nonprofit newsroom that chronicles the long COVID crisis.

Have long COVID? Here’s what to know about disability insurance is a post from Wisconsin Watch, a non-profit investigative news site covering Wisconsin since 2009. Please consider making a contribution to support our journalism.

A National Institutes of Health Pediatric Oncology Branch POB researcher's lab jacket. The NIH consists of 27 different centers and institutes that each focus on health challenges facing Americans. President-elect Donald Trump announced Tuesday he would nominate Stanford University researcher Dr. Jay Bhattacharya to lead the wide-ranging agency. (Photo credit: NIH)

WASHINGTON — President-elect Donald Trump said Tuesday he has selected a Stanford University professor of health policy and skeptic of COVID-19 precautions to run the National Institutes of Health, the sweeping federal agency tasked with solving many of the country’s biggest health challenges.

Dr. Jay Bhattacharya will require Senate confirmation before taking over the role officially, but assuming he can secure the votes next year when the chamber is controlled by Republicans, he’ll have significant sway over where the federal government directs billions in research dollars.

“Dr. Bhattacharya will work in cooperation with Robert F. Kennedy Jr. to direct the Nation’s Medical Research, and to make important discoveries that will improve Health, and save lives,” Trump wrote in the announcement. Kennedy is Trump’s pick to lead the Department of Health and Human Services.

Bhattacharya posted on social media that he was “honored and humbled” by the nomination and pledged to “reform American scientific institutions so that they are worthy of trust again and will deploy the fruits of excellent science to make America healthy again!”

In addition to Kennedy, other Trump nominees for health-related positions include former TV personality and onetime Pennsylvania U.S. Senate candidate Mehmet Oz to lead the Centers for Medicare and Medicaid Services, former Florida Congressman Dave Weldon to run the Centers for Disease Control and Prevention, Dr. Marty Makary for commissioner of the Food and Drug Administration and Fox News medical contributor Dr. Janette Nesheiwat as the next surgeon general.

“Together, Jay and RFK Jr. will restore the NIH to a Gold Standard of Medical Research as they examine the underlying causes of, and solutions to, America’s biggest Health challenges, including our Crisis of Chronic Illness and Disease,” Trump wrote in his announcement.

Health economist

Bhattacharya received his undergraduate degree from Stanford University in 1990 before earning his medical degree from its School of Medicine in 1997 and a Ph.D. from the university’s Economics Department in 2000.

He focuses his research on health economics and outcomes, according to his curriculum vitae, the academic version of a resume.

Bhattacharya’s biography on Stanford’s website says that in addition to being a professor of health policy, he runs its Center for Demography and Economics of Health and Aging, in addition to working as a research associate at the National Bureau of Economics Research.

“Dr. Bhattacharya’s research focuses on the health and well-being of vulnerable populations, with a particular emphasis on the role of government programs, biomedical innovation, and economics,” according to the biography. 

Among his research areas is the “epidemiology of COVID-19 as well as an evaluation of policy responses to the epidemic.”

‘A fringe component’

Bhattacharya testified before the U.S. House Oversight Committee’s Select Subcommittee on the Coronavirus Pandemic in February 2023 that he believed there was “near universal agreement that what we did failed.”

“Official counts attribute more than one million deaths in the United States and seven million worldwide,” he said.

Bhattacharya was one of three authors of The Great Barrington Declaration in October 2020, arguing that younger, healthy people should have gone about their normal lives in an effort to contract COVID-19, since they were somewhat less likely to die than at-risk populations. 

The brief declaration says that “(a)dopting measures to protect the vulnerable should be the central aim of public health responses to COVID-19.” But it doesn’t list what those measures should include and never brings up masking, physical distancing, or vaccination.

Several public health officials and researchers rejected the declaration, noting that it didn’t cite any research, data or peer-reviewed articles.

Former NIH Director Francis S. Collins, who ran the agency from 2009 through 2021, told The Washington Post in October 2020 that the Barrington Declaration authors’ beliefs were not held “by large numbers of experts in the scientific community.”

“This is a fringe component of epidemiology. This is not mainstream science. It’s dangerous. It fits into the political views of certain parts of our confused political establishment,” Collins said in the Post interview. “I’m sure it will be an idea that someone can wrap themselves in as a justification for skipping wearing masks or social distancing and just doing whatever they damn well please.”

One of the many reasons public health experts recommended masking, working from home and physical distancing before there was a COVID-19 vaccine was to prevent patients from overwhelming the country’s health care system.

There were concerns during some of the spikes in COVID-19 infections that the country would have so many ill people at one time there wouldn’t be enough space, health care professionals or equipment to provide treatment.

Wide-ranging agency

The NIH is made up of 27 different centers and institutes that each focus on health challenges facing Americans.

The National Institute of Allergy and Infectious Diseases, formerly run by Dr. Anthony Fauci, became one of the more well known institutes during the COVID-19 pandemic, especially when he would regularly appear beside Trump at press briefings.

Other components at NIH include the National Cancer Institute, National Institute on Aging, National Institute of Neurological Disorders and Stroke, and the NIH Clinical Center that’s also referred to as America’s research hospital.

Congress approved $48 billion in discretionary spending for NIH during the last fiscal year, continuing a broadly bipartisan push that for years has increased funding to the agency to provide grants to research some of the most challenging diseases and illnesses facing Americans.

The current NIH director, Monica M. Bertagnolli, testified before Congress in early November about how the agency was working to rebuild trust following the pandemic.

Bertagnolli told U.S. House lawmakers the NIH was focusing some of its research on finding cures for rare diseases, since for-profit companies often don’t have the financial incentive to do so.

She also rejected the notion that NIH leaders have allowed politics to interfere with the agency’s mission.

“First and foremost, NIH concentrates on science, not on politics,” Bertagnolli said. “We actually have an integrity mandate against political interference in our work. That is the law for us and we abide by that completely.”

Pediatric Oncology Branch researchers observe samples in a microscope in the National Institutes of Health Clinical Center. NIH Director Monica M. Bertagnolli testified at a U.S. House Appropriations hearing Tuesday. (Photo credit: NIH)

WASHINGTON — The director of the National Institutes of Health testified before Congress on Tuesday the agency is looking to rebuild trust following the COVID-19 pandemic by solving some of the biggest health challenges facing the country.

Monica M. Bertagnolli told the House panel in charge of the agency’s funding that one of those focus areas is rare diseases, since private, for-profit companies often won’t take on the financial risk of developing gene therapies. 

“What if you’re a parent of a child who has this rare disease?” Bertagnolli said. “We know if we work hard, our technology will be able to cure that child.”

Bertagnolli said during the two-hour hearing that NIH plans to soon begin “delivering more out of our pipeline for gene therapies for rare disease” and is collaborating with the U.S. Food and Drug Administration to ensure a smooth process.

“We will manufacture and test them within the clinical center at NIH. And then when they are ready for marketing and production — at that point after everything is completely de-risked — we will hand them over to the for-profit sector with the absolute requirements that the people who need them are able to access them,” Bertagnolli said.

The NIH, she told lawmakers, is responsible for the health of all Americans and will partner with the private sector on projects, but “can’t abandon these patients and these families.”

Bertagnolli told the House Labor-HHS-Education Appropriations Subcommittee that working to solve health challenges is one of several ways the NIH is working to rebuild trust with Americans following the global pandemic.

“We do not get people’s trust by putting out public service announcements. We do not gain people’s trust by saying ‘We’re smart, we know what to do, we’re the scientists,’” Bertagnolli testified. “We get people’s trust by solving the problems they need to have solved.”

Science, not politics

Bertagnolli also sought to reinforce basic scientific understanding about public health during the hearing, pressing back against political notions of researching infectious diseases.

“First and foremost, NIH concentrates on science, not on politics,” Bertagnolli said. “We actually have an integrity mandate against political interference in our work. That is the law for us and we abide by that completely.”

Bertagnolli noted that if NIH ceased research into diseases, death rates would rise.

“We are facing some serious threats. I mean, look in the news today, H5N1 is scary for us and we are all over risk assessment, mitigation, working with our other federal agencies to make sure that we can protect and mitigate anything that happens with that virus doing something evil,” Bertagnolli said. “We cannot afford to let down on that, people will die.”

H5N1, also known as highly pathogenic avian influenza, has caused significant disruptions to U.S. poultry farms for years, but showed up in dairy herds this March, raising alarm bells for public health experts.

Fifty-three people have been diagnosed with the virus so far, though the risk to the general public is low.

NIH duties

The NIH is made up of 27 different centers and institutes, including the National Cancer Institute, National Institute on Aging, National Institute of Neurological Disorders and Stroke, and the NIH Clinical Center that’s also referred to as America’s research hospital.

Congress approved $48 billion in discretionary funding for NIH in March as part of a full-year spending package.

The NIH writes on its budget website that 84% of its funding goes to “extramural research, largely through almost 50,000 competitive grants to more than 300,000 researchers at more than 2,500 universities, medical schools, and other research institutions in every state.”

“In addition, approximately 11% of the NIH’s budget supports projects conducted by nearly 6,000 scientists in its own laboratories, most of which are on the NIH campus in Bethesda, Maryland,” it states. “The remaining 6% covers research support, administrative, and facility construction, maintenance, or operational costs.”

Bipartisan support for funding

The NIH has long had broad bipartisan support in Congress, especially from members of the Appropriations committees.

That continued Tuesday with the majority of Democratic and Republican lawmakers on the panel asking genuine questions about NIH research, funding and future plans.

Alabama Republican Rep. Robert Aderholt, chairman of the subcommittee, said there was “no doubt every life is touched by the discoveries made by the investments at NIH.”

Aderholt encouraged Bertagnolli to make it a top priority to rebuild “confidence in the NIH as a leader in unbiased, nonpartisan, objective, basic science.”

A Pew Research Center survey published earlier this month showed 76% of Americans held a fair amount or a great deal of “confidence in scientists to act in the public’s best interests.” That represents a slight rebound for public faith in scientists after a steady decline since the start of the pandemic, according to Pew surveys.

Eighty-nine percent of those surveyed said research scientists were intelligent, while 65% said they were focused on solving real problems.

Connecticut Democratic Rep. Rosa DeLauro, ranking member on the panel, applauded Bertagnolli for “ensuring NIH’s life-saving research reaches more places and more patients, especially in rural communities.”

“And she understands that health policy must be first and foremost based on science and data,” DeLauro said.

NIH funding, she said, was going toward better understanding numerous diseases facing Americans, including ALS, Alzheimer’s, cancer, diabetes and mental illness.

The agency is also dedicating research dollars to address several health challenges facing women, including maternal mortality, as well as other areas that historically have been ignored or underfunded.

“NIH supported research has us on the cusp of curing endometriosis and they are ramping up investments for menopause, which will ultimately impact half of our country’s population,” DeLauro said. “But there is still a long way to go.”  

Gov. Tony Evers addresses reporters on July 7, 2020, five months into the COVID-19 pandemic. Evers and other governors say they struggled to secure testing materials and other needed equipment to address the pandemic at the time, while according to a new book Donald Trump secretly sent COVID-19 tests to Russian President Vladimir Putin during that period. (Screenshot from Youtube)

Wisconsin Gov. Tony Evers and two other Democratic governors joined Friday in condemning Donald Trump after reports that as president Trump shipped COVID-19 tests to Russian President Vladimir Putin early in the pandemic.

In a new book, journalist Bob Woodward writes Trump sent the tests to Putin secretly, and that Putin told Trump not to reveal what he had done to avoid political repercussions.

The book, to be published Tuesday, Oct. 15, was the subject of a Washington Post report published Tuesday. A Trump spokesman dismissed the book’s claims about Trump as false.

In a joint statement Friday, Evers, Illinois Gov. J.B. Pritzker and Michigan Gov. Gretchen Whitmer wrote, “Former President Trump betrayed us.”

When the three governors sought in the first months of the pandemic to obtain COVID-19 testing kits, ventilators, and N-95 masks, the federal government “abandoned us to fend for ourselves,” the governors added. Trump and the federal government ignored requests for help at a time when the pandemic’s death toll was still unknown and hospitals were beleaguered as they tried to treat patients and protect health care workers, according to the governors. “It was a terrifying time.”

The governors assert that after Trump rejected their pleas to ramp up domestic production of those supplies under the Defense Production Act, states turned to “price gouging foreign suppliers” and purchased what they needed using state funds.

“Now we are reading reports that during this unprecedented and historic public health crisis, while Americans were dying and desperate for life saving supplies, former President Trump was personally sending testing kits to Russian President Vladimir Putin,” the governors wrote. “For that, we demand answers.”

The statement claims that Trump’s “cozy relationship with Putin has been well documented,” and that the new report shows him “putting a foreign dictator before Americans, threatening our national security in the process.”

“Former President Trump betrayed us. Americans suffered during the pandemic. 1.2 million Americans died, many because they did not have access to adequate supplies at a critical time,” the governors wrote. “Donald Trump must explain why he put his personal friendship with Putin, a ruthless dictator and war criminal, over the American people.”

Milwaukee Neighborhood News Service sat down with Monica Wendel, the new dean of the Zilber College of Public Health at the University of Wisconsin-Milwaukee, to discuss the state of COVID-19 and the continuing health recommendations for the disease. 

In this video, Wendel discusses why there has been a summer uptick in COVID-19 cases as well as how the community can keep safe as the trend continues.

News414 is a service journalism collaboration between Wisconsin Watch and Milwaukee Neighborhood News Service that addresses the specific issues, interests, perspectives and information needs identified by residents of central city Milwaukee neighborhoods. Learn more at our website or sign up for our texting service here.

Video: With COVID-19 on the rise, UW-Milwaukee health expert shares safety tips is a post from Wisconsin Watch, a non-profit investigative news site covering Wisconsin since 2009. Please consider making a contribution to support our journalism.