Individuals, providers urge New York to take nation-leading role in fight against long COVID

By Bethany Bump

 It was Halloween 2020 when the first member of the Hogan family got sick.

First came excruciating headaches for Rebekah Hogan, a nurse at St. Peter’s Hospital in Albany. The cause was pretty obvious: Three days earlier, while waiting to get fit-tested for a new N-95 mask, she had prolonged close contact with a patient who would later test positive for coronavirus.

A test confirmed she was right, and one by one the illness swept through her family’s Colonie home. 

“I was really sick by that Saturday night and by Sunday he was sick,” she said of her husband, James. “Then the kids started having symptoms.”

Only one of the kids tested positive for coronavirus, but all three had similar symptoms around the same time, she said, including fevers, rashes, stomach pain and vomiting.

“We were in pain,” she said. “And then, it just never seemed to end.”

In the nearly 16 months since, the Hogans have experienced a wide range of symptoms they believe were caused by their infections, including headaches; fatigue; stomach, back and nerve pain; difficulty breathing; pounding heart; extreme exhaustion following exertion; and brain fog so severe that Rebekah quit her job and stopped driving for fear she would unintentionally harm herself or others.

“In the beginning, they were saying, you know, six months,” she said. “And then at six months, they were saying this could last 12 to 18 months. And now I’m at what? Sixteen months? And they’re like, you know, we might want to start talking about things you are capable of doing. To me, that felt like backpedal speak for, ‘you probably aren’t getting better.’ ”

Will omicron fuel new surge of long COVID-19?

The federal Centers for Disease Control and Prevention estimates that one in three people infected with coronavirus will develop long-term symptoms like the Hogans. 

As the recent surge of infections declines, New York health officials and policymakers are turning their attention to this Post-Acute COVID-19 Syndrome — more commonly called long COVID or long-haul COVID — out of concern the omicron wave will lead to a sizable new population of patients with lingering health effects in need of treatment, support and disability accommodations.

“The fact is that they are never going to be able to accommodate the number of people who are suffering from long COVID,” said Diana Berrent, founder of Survivor Corps, an advocacy group of over 200,000 members with current, chronic or past COVID-19. “Pre-omicron we had statisticians saying we had 150 million infections. That means 50 million cases of long COVID — and that was before omicron.

At a Feb. 3 panel discussion hosted by the state Department of Health, doctors and researchers said not enough science is available yet to explain whether the less severe but highly transmissible omicron variant will produce long COVID symptoms similar to those caused by other variants. But they agreed the omicron wave is likely to produce a large influx of new “long haulers” due to the sheer number of infections it caused.

Research remains underway to determine exactly how and why coronavirus continues to cause so much damage over the long term for some people compared to others. But emerging science confirms the symptoms are very real and tied to the virus — an important point for the people impacted, as many continue to face disbelief from friends, families and even doctors, experts in the area note.

“Although we may not have a single unifying biomarker, that doesn’t matter,” said David Putrino, director of rehabilitation innovation with Mount Sinai Health System. “We have enough evidence in the literature right now published that something is happening to the body to cause these changes, and so people should not be gaslit or told it’s psychosomatic.”

Much of the damage is believed to be triggered by an abnormal immune response that causes heightened, ongoing inflammation in the body that can wreak havoc on various body systems. Why some have this abnormal response is currently unclear, but researchers believe it may be genetic or caused by viral particles remaining in the body after infection.

“When we’re talking about long COVID, I want you to think about our members who are in their early 30s, who were athletes, who were, you know, marathon runners at the height of their career, who are now in wheelchairs, they are on permanent feeding tubes, they are disabled,” Berrent said.

The CDC and other health authorities note that those who experienced mild or even no symptoms from their initial infection can go on to experience long COVID symptoms. Indeed, that’s one reason health experts are not reassured by the reduced severity of omicron compared to other variants, since so many people have now been infected and may not even realize it.

“When we looked into what the one symptom was that was most predictive of long COVID — was it having a cough, was it having a fever? No,” said Berrent. “It was being asymptomatic. So you have to remember that most of these people were not hospitalized. They had what are considered mild cases of COVID or asymptomatic cases, and they are largely the healthiest among us.”

‘These are lives that are ruined’

Panelists at the event earlier this month in Albany urged state policymakers to take a nation-leading role in the fight against long COVID like the state did in the fight against AIDS, citing New York’s role as an early epicenter of both diseases. 

Because of its complexity and impact to multiple body systems, health providers say long COVID requires a multidisciplinary response that includes primary care, cardiologists, pulmonologists, physical therapists, neuropsychiatrists and others.

Several large hospital systems and health care providers have convened and tapped multidisciplinary teams to lead and staff post-COVID care centers, but they still remain too few and more are needed, Berrent said. There are currently just 26 nationwide, including three in the Capital Region.

Dr. Amit Chopra, a pulmonologist with Albany Medical Center, said the hospital’s post-COVID care center sees about 50 long COVID patients a month and has seen over 600 patients to date since opening roughly one year ago. Treating the physical symptoms is sometimes easier than treating the mental impact of the disease, he said.

“I think the biggest challenge we see is mental health issues afterwards,” he said.

“If you do any testing and it comes back negative, people don’t believe the patient has post-COVID … and I think it just propagates and perpetuates the whole situation,” he continued. “I think that’s why we see a wide variety of symptoms that usually do include anxiety, depression and fatigue.”

In addition to standing up more care centers, panelists urged the state Department of Health to identify certain well-performing centers as “centers of excellence” that could then consult via telehealth with primary care offices, federally qualified health centers and other ambulatory care settings. This is especially important to consider in the context of increasing access to long COVID services and supports, they said.

Dr. Monica Lypson, vice dean for education at Columbia University’s Vagelos College of Physicians and Surgeons, began noticing inequities in access to long COVID services after helping to develop a recovery center at George Washington University.

“When we developed this clinic, one of the things that I started to realize was that the patient population that was seeking care at our clinic was the patient population that had commercial insurance, had excellent health care and could advocate in a way that others could not,” she said.

Accessing long COVID services is already made difficult by the patient’s symptoms, Putrino said.

“If we don’t have easy care navigation, if we don’t have easy access to reimbursable, virtual care, and … if we don’t make it easy for people to get multidisciplinary tests in one sitting, we really are discriminating against people who are trying to protect their health by avoiding exertion,” he said. “And I think that that needs to be said over and over again. You know, I can categorically tell you as someone who’s managed a lot of clinical care that access to care can be gated by symptoms of the people with long COVID. And so if we’re not making every effort to make it easier, then that’s exclusion.”

The mental and emotional toll of long COVID will also require significant resources, panelists said. But the cost of not providing them would be even higher, they warned — both to the individual and to society in the form of disability payouts, school accommodations, and higher costs to the health care system.

On an individual level, Berrent said Survivor Corps receives suicide threats daily from members experiencing long-term symptoms.

“They might have their lives, but their livelihoods have been ripped from them,” she said. “And so this is more than just fatigue. This is more than just anxiety. These are lives that are ruined … We have had many members actually take their own lives. So that is what we’re talking about here. That’s not from depression. That’s from having no hope for the future because their symptoms are so ravaging.”

Hogan, who dreamed of becoming a nurse and buying a new house for her family, said she struggles to get out of bed and wonders if she’ll ever get back to the career she worked so hard for. Her husband, a disabled war veteran, battles depression. And their 9-year-old began having intrusive thoughts that his mother will die and refuses to leave her side. 

In the meantime, the family has been working to enroll themselves in studies and see various doctors and specialists, but the ongoing fights with insurance companies and attempts to coordinate their own care have grown exhausting, Hogan said.

“This is all stuff that is difficult for a healthy, neurotypical, able-bodied person. But we’ve got a disabled vet, and now I’m sick and I got three sick kids and it’s like, ‘Oh, my God, we need an adult in this house.’ But there’s no such thing. There’s no such thing as sending in an adult to do the adult s—. So instead, you know, we try to scrape by, we try to do what we can. But like, it’s not happening. It’s not happening. And it’s not fair. There’s just nothing more you can do. I mean, what else is there to do?”

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