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Long-time COVID-19 sufferers in capital region plead for treatment

COLONY – It was Halloween 2020 when the first member of the Hogan family fell ill.

First, it was 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 tested for a new N-95 mask, she had prolonged close contact with a patient who would later test positive for the coronavirus.

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

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

Only one of the children 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. “Besides, it never seemed to end.”

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

“At first they were saying, you know, six months,” she said. “And then at six months, they were saying it could last 12 to 18 months. And now what am I up to? Sixteen months? And they’re like, you know, we could start talking about things that you’re capable of doing. To me, it felt like a throwback, “you’re probably not getting better.” ”

Will Omicron fuel a new wave of long COVID-19?

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

As the recent surge in infections wanes, health officials and policymakers in New York are turning their attention to this post-acute COVID-19 syndrome — more commonly known as long COVID or long-haul COVID — out of concern that the omicron wave does lead to a significant new population of patients with persistent health effects requiring treatment, support and disability accommodations.

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

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

Research is still ongoing to determine exactly how and why the coronavirus continues to cause so much long-term damage for some people over others. But emerging science confirms that the symptoms are very real and linked to the virus – an important point for those affected, as many continue to face the disbelief of friends, families and even doctors, note experts in the domain.

“While we don’t have a single unifying biomarker, it doesn’t matter,” said David Putrino, director of rehabilitation innovation at Mount Sinai Health System. “We have enough evidence in the currently published literature that something is going on in the body to cause these changes, and so people shouldn’t be gaslighted or say it’s psychosomatic.”

Much of the damage is thought to be triggered by an abnormal immune response that causes increased and ongoing inflammation in the body that can wreak havoc on various body systems. It’s currently unclear why some have this abnormal response, but researchers believe it may be genetic or caused by virus particles remaining in the body after infection.

“When we talk about long COVID, I want you to think about our members who are in their thirties, who were athletes, who were, you know, marathon runners at the peak of their careers, who are now in wheelchairs, they are on permanent feeding tubes, they are disabled,” Berrent said.

The CDC and other health authorities Remark that those who had mild symptoms or even no symptoms from their initial infection may continue to experience long COVID symptoms. Indeed, this is one of the reasons why health experts are not reassured by the reduced severity of omicron compared to other variants, because so many people have now been infected and do not realize it. maybe not even count.

“When we looked at what was the most predictive symptom of long COVID – was it a cough, was it a fever? No,” Berrent said. “It was asymptomatic. It must therefore be remembered 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 of us.

“These are lives that are wasted”

Panelists at the event held earlier this month in Albany urged state policymakers to take a leadership role in the fight against the long COVID, as the state has done in the fight against AIDS, citing New York’s role as the early epicenter of both diseases.

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

Several large hospital systems and healthcare providers have convened and employed multidisciplinary teams to lead and staff post-COVID care centers, but they still remain too few in number and more are needed, Berrent said. There are currently only 26 in the whole country, including three in the capital region.

Dr. Amit Chopra, a pulmonologist at Albany Medical Center, said the hospital’s post-COVID care center sees about 50 long-term COVID patients a month and has seen more than 600 patients to date since it opened about a year. It is sometimes easier to treat the physical symptoms than to deal with the mental impact of the disease, he said.

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

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

In addition to creating more care centers, panelists urged the state Department of Health to identify certain successful centers as “centers of excellence” which could then consult via telehealth from primary care offices, federally licensed health centers and other ambulatory care facilities. This is particularly important to consider in the context of increasing access to long COVID services and supports, they said.

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

“When we developed this clinic, one of the things I started to realize was that the patient population that sought care in our clinic was the patient population that had commercial insurance, had excellent health and could defend in a way others couldn’t,” 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 to get multidisciplinary testing in one session, we’re really discriminate against people who are trying to protect their health by avoiding exertion,” he said. “And I think that needs to be said over and over again. You know, I can tell you categorically, as a person who has managed a lot of clinical care, that access to care can be limited by symptoms for people who have had COVID for a long time, and so if we’re not doing everything we can to make it easier, then it’s exclusion.

The mental and emotional toll of the 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 benefits, school accommodation and higher costs to the health care system. health.

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

“They could have their lives, but their livelihoods have been taken away from them,” she said. “And so it’s more than fatigue. It’s more than just anxiety. These are lives that are being ruined… Many members have actually committed suicide. So that’s what we’re talking about here. It’s not depression. This is because they have no hope for the future because their symptoms are so devastating.

Hogan, who dreamed of becoming a nurse and buying a new house for her family, said she struggled to get out of bed and wondered if she would ever find the career she had worked so hard for. Her husband, a disabled veteran, struggles with depression. And their 9-year-old started having intrusive thoughts that her mother was going to die and refuses to leave her.

In the meantime, the family worked to enroll in studies and see various doctors and specialists, but the ongoing fights with insurance companies and attempts to coordinate their own care became exhausting, Hogan said.

“That’s all that’s hard for a healthy, neurotypical, able-bodied person. But we have a disabled vet, and now I’m sick and I have three sick kids and it’s like, ‘Oh, my God, we need an adult in this house.’ But there is no such thing. There’s nothing like sending an adult out to do adult bullshit—. So instead, you know, we try to make do, we try to do what we can. But like, it’s not happening. It doesn’t happen. And that’s not fair. You can’t do anything more. I mean, what else is there to do?”