As COVID hangs on, the ‘new normal’ is leaving many behind

In early May, a day after the legislative session ended, Gov. Ned Lamont reflected on the recent passage of what he called the state’s “first post-pandemic budget.”

“I know we’re still at a 10% infection rate,” he quickly added, “but as we move on to our new normal, this was important.”

Lamont also acknowledged a package of recently adopted bills aimed at expanding children’s mental health services.

“Coming out of COVID,” he said, “I think we’ve seen in no uncertain terms the stress that was on mental health.”

But is Connecticut and the rest of the world “coming out” of COVID? Is this a “post-pandemic” era?

Last week, amid steadily climbing case rates, Connecticut’s seven-day rolling average topped 13% – a substantial upswing from the end of February, when the first omicron wave subsided and the state’s daily positivity rate hovered around 2% to 3%.

Hospitalizations, which by mid-March had fallen below 100, exceeded 300 last week.

Two new highly contagious subvariants of omicron are spreading quickly and one, BA.2.12.1, could become the dominant form of COVID-19 in the U.S. in the coming weeks.

Even as case rates balloon in Connecticut and elsewhere, restrictions designed to curb the spread of the virus are more relaxed than ever. A broad masking requirement on airplanes, trains and other public transportation was dropped in April (though some companies continue to mandate masks, including the Metropolitan Transit Authority). Statewide school mask edicts were lifted in February in Connecticut and several neighboring states, leaving decisions on masking up to each district. New York City stopped requiring proof of vaccination to dine in restaurants or to attend most Broadway shows.

But as the country opens back up and many abandon masking, some physicians have warned that it’s not as simple as returning to pre-pandemic behaviors. Millions of people infected with the virus are developing long COVID, a condition in which symptoms like brain fog, shortness of breath and dizziness can linger for weeks or months. The coronavirus has left others with increased risks of cardiovascular problems — including abnormal heart rhythms, blood clots and heart muscle inflammation — diabetes and brain issues.

And while many are resuming travel, dining indoors or attending large gatherings, some who are immune-compromised or care for an immune-suppressed loved one face a very different “new normal,” one in which they feel left behind.

“There’s enormous political pressure to say the pandemic is over,” said Gregg Gonsalves, associate professor of epidemiology at the Yale School of Public Health. “But the idea that we’re out of the woods is just not true. We’re in the midst of a slowly building surge.

“There’s a political imperative to put the pandemic behind us. Everybody’s really tired. Everybody’s really frustrated. Nobody wants to talk about this anymore. Nobody wants to think about it anymore. But wishing doesn’t make it so.”

‘A part of us are being left behind’

For some who live with or care for people who are immunocompromised, or who themselves are immune-suppressed, the “new normal” is anything but.

Pam Hunt has been extra cautious since the pandemic hit. Her 25-year-old son, Yehoshua, has Trisomy 13, also known as Patau syndrome, a genetic disorder that can cause seizures, decreased muscle tone, intellectual disabilities and skeletal abnormalities, among other conditions.

Yehoshua is deaf-blind, has cognitive disabilities and relies on the use of a wheelchair, his mother said.

“He’s just an amazing young man,” she said. “He wasn’t supposed to live to be a year old. So to know that he’s going to celebrate 26 years next month, that’s an accomplishment.”

Keeping her son safe from COVID-19 means forgoing get-togethers with family and friends, talking to visitors from their cars, skipping activities like the movies, and limiting trips out of the home to what’s necessary, such as doctor appointments or grocery store runs.

“It’s not so much I’m afraid for myself; I’m afraid that I might bring something back here,” said Hunt, a breast cancer survivor who lives in Norwich. Along with the other risks, Yehoshua relies on his sense of touch and smell, and some COVID patients have lost their sense of smell.

As many people stop wearing masks and resume pre-pandemic outings, Hunt said she feels forgotten.

“It’s like there’s a part of us that are being left behind, because the majority of people are quote-unquote normal and healthy, can just get up and go, and kind of live life in this new normal,” she said. “But then there’s so many of us who don’t have that luxury.”

To Hunt, the message seems to be, “We got to go with the majority, and the majority of people can handle this new normal. This is for the good of ‘the more.’ … ‘We’re going on with life and the world’s going on. And hopefully one day you can rejoin us, but if not, good luck.’”

Marney White is in remission from a rare autoimmune disease. The treatment depleted her B cells, a type of white blood cell that produces antibodies to fight bacteria and viruses.

For more than two years, the Yale professor has worked from home. She has her groceries and other necessities delivered but still must be cautious when leaving her home for medical appointments.

“It has been incredibly agonizing, because there are no masks,” she said. “Even going to a pharmacy is carrying some risk, going to the grocery store, going to required necessary medical appointments. I’m constantly encountering unmasked people in the lobby of medical buildings.

“I recognize my incredible privilege in all of this, that I’ve been able to navigate this, that I have a job that allowed me to work fully remotely this entire time and will continue to.”

That navigation isn’t easy. Her son, a fifth-grader, has been learning remotely almost entirely since the pandemic began. When he did return recently, the school was accommodating in allowing him to join a less congested classroom, giving him a space away from others in the classroom and letting his parents take him out of school during lunchtime. But after only 16 days, White said, she noticed that families of students at the school were encouraging others on social media not to report COVID cases to the district.

“We had to pull him out again,” she said. “It’s certainly been challenging. It feels like every time we begin to see a little light at the end of the tunnel, there are about three steps back.”

Kayle Hill takes medication for rheumatoid arthritis that suppresses her immune system. Hill, an advocate for Connecticut’s disability community, doesn’t believe the state is doing enough to address the latest COVID surge, which has left her uneasy when going about routine errands.

Hill said she’s not expecting a reinstatement of universal mask mandates, but she would prefer to see masking requirements in places such as public transportation, grocery stores and government buildings — areas that people with disabilities and others at high risk of COVID complications cannot always avoid.

“I have to go to the post office sometimes. And, you know, it might as well be the same thing as not having a ramp outside for a wheelchair user,” she said. “It makes it unsafe and makes me unable to enter the building.”

With fewer and fewer people masking and refusing to take other precautions, Gonsalves said, society is demonstrating “the crudest utilitarianism.”

“It’s basically saying that one baby, that one woman with breast cancer, compared to the rest of us at that convention or at that art opening or in that train station – they’re expendable, right?” he said. “We want normal so badly that we pretend they don’t exist. It’s survival of the fittest. … We’re willing to throw certain people into the volcano in order to appease the gods of normalcy.”

‘No one wishes they got COVID’

While a lot of attention has been paid to hospitalizations and deaths as major consequences of the virus, another threat looms: long COVID.

The condition is more prevalent than many might think, and its pervasiveness undercuts the idea that the risks of COVID-19 are waning.

Across the U.S., some studies estimate 10% to 30% of coronavirus cases result in long COVID. Others put the number higher; authors of a Penn State College of Medicine study say more than half of people who had the disease develop the condition.

In Connecticut, physicians treating these patients say 5% to 30% of infections here have led to long COVID.

For many, it is debilitating. Symptoms like shortness of breath, fatigue, brain fog, headaches, cardiac and central nervous system problems, cognitive dysfunction and musculoskeletal issues can last for weeks or even months. Some patients have chronic pain.

And there’s currently no cure and no definitive way to treat or prevent the condition.

“I can tell you that the people who are suffering with long COVID wish they hadn’t gotten COVID,” said Dr. Andaleeb Shariff, primary care clinical lead for Hartford HealthCare’s COVID Recovery Center. “No one wishes they got COVID, but long COVID doesn’t have a treatment. It doesn’t have a cure. It’s unrelenting for many people. And it’s distressing. It’s upsetting when I see my patients get it.”

Long COVID occurs in people with a confirmed or probable case of the virus who develop lingering symptoms, and for whom no other diagnosis can explain the symptoms. Those symptoms typically last four weeks or longer.

Health officials say the condition can grow out of severe or mild cases of the virus. It can even affect some who initially had no COVID symptoms.

For some people, the symptoms come and go without explanation. Others have suffered consistently since their diagnosis. And still others have seen symptoms stop abruptly, either because of a vaccination, a booster shot or another reason.

Since Hartford HealthCare launched its long COVID recovery center in October 2020, it has seen 1,778 patients. But many more may not know what care options are available, may not know their condition is considered long COVID or may not have sought care. The center connects patients with doctors in a range of specialties to address a constellation of ailments.

Shariff and her colleagues recommend vaccination and boosting against the virus because even though breakthrough infections occur, “we have anecdotally seen less cases of long COVID in people who are vaccinated.”

“The key with long COVID that we really see is, regardless of what symptomatology they have, it’s really impacting their everyday function,” Shariff said. “We’re seeing new musculoskeletal [problems], we’re seeing cardiac concerns and central nervous system issues that people are presenting with that they either never had, or that they might have had in the past that completely resolved and are now re-manifesting themselves.”

Even in people who don’t develop long COVID, the risk of future health problems can increase. Studies have shown that some people who have had COVID-19 are at higher risk for heart attack, stroke, heart failure and other conditions post infection.

“The concern isn’t just contracting long COVID, it’s COVID itself,” Shariff said. “There are [about] 300 people admitted to the hospital with COVID. It’s not disappeared. And I don’t actually understand what the definition of ‘new normal’ is because I don’t really know if I want this to be the new normal.

“I don’t want my patients to be contracting something when they could be mask wearing and when they could be social distancing.”

Despite a substantial number of people developing long COVID, others may not understand the condition or believe it could happen to them.

“I think a lot of people are convincing themselves, ‘Well, this didn’t happen to me, so I’m not really at risk. I’m not gonna lose anybody. I’m not going to get long COVID,” said White, a clinical psychologist who teaches courses on behavioral health and epidemiology at Yale. “‘I’m sure that’s just people being hysterical.’”

Calculating risk

Lamont is not the only state or federal leader to use the phrases “post pandemic” and “new normal.” Even Dr. Anthony Fauci, President Joe Biden’s chief medical adviser, recently told PBS NewsHour that the U.S. was “out of the pandemic phase,” before later revising his statement to say the country had moved beyond the “acute stage of the pandemic phase” and adding, “There’s no doubt this pandemic is still ongoing.”

The U.S. just marked the grim milestone of 1 million American COVID-19 deaths and cases are rising in many states.

As restrictions fall away, state and federal officials have put a strong emphasis on personal responsibility and assessing personal risk when navigating the current surge. But how does someone calculate personal risk?

To Dr. Manisha Juthani, Connecticut’s public health commissioner, that means utilizing available tools such as vaccines, booster shots, masks and antiviral medications.

Last week, six counties — Hartford, New Haven, Middlesex, Litchfield, Tolland, and Windham — moved into the high transmission level of community spread, as labeled by the Centers for Disease Control and Prevention. Counties are deemed high transmission when they have reported more than 100 cases for every 100,000 residents during the past week.

“Particularly in these counties, we are recommending mask wearing,” Juthani said.

“Given where we are now, two and a half years into this pandemic, with vaccines, with therapeutics, with immunity that people have developed either through vaccines or through natural infection, the chances of declaring another public health emergency, in my opinion, are much lower.”

At this point, Juthani said, people need to balance their mental health and physical health and reflect on “what they can personally cope with.”

“If it was just purely a question of, is it good to get COVID over and over? The clear answer is no,” she said. “And I would highly recommend that people consider each of these risks at various different times. … On the flip side, I know people who have not gotten COVID yet, who are still living in quite a lot of anxiety and fear over getting COVID. And I think that’s also not healthy, because I don’t think that kind of anxiety and fear is really useful to overall wellbeing.

“So it’s really trying to find that happy medium, in balancing all of these things as we move forward with this pandemic.”

Max Reiss, a spokesman for Lamont, echoed Juthani’s sentiments.

“The vast majority of people know what the tools are at their disposal, whether it’s vaccination, boosting, testing, wearing a mask — a well-fitting mask,” he said. “After more than two years, people have the tools necessary, and they know what keeps them safe.

“At the very beginning of this, we took all the measures we did because of the lack of information we had about the virus. And as we’ve moved along, we’ve learned more,” Reiss said. “The virus has obviously changed. But the tools have also evolved. We’re at a point where we believe there’s a lot of personal responsibility out there.”

White sees it differently.

“It’s nearly impossible to assess personal risk, and the messaging by the CDC and by state leaders has been really damaging,” she said. “Immunocompromised and elderly people are in a really tough spot. Even the initial read of the CDC guidance, with the new thresholds for whether or not masks should be worn, mention how people with immunocompromised systems and cohabiting family members should behave and it’s almost a footnote.

“It’s like, ‘Oh yeah, but if you’re at elevated risk, you’ll want to talk to your doctor.’ And it’s really kind of buried. So I can see where the standard citizen trying to navigate this would think it’s safe now, that it’s over.”

Remarks about the “new normal” and moving ahead despite rising case rates gloss over people who are vulnerable, White said.

“There’s been no memorial locally. People’s names are not mentioned or respected in any way. And it continues to be, even from the CDC director and politicians, ‘Oh yeah, but those people were very sick.’ OK, and that means they should have died?” she said. “What does that mean? I think that’s kind of a natural human reaction to try to reason and blame the victim, because it creates a distance and makes it feel as though you are impervious to the misfortune that befell them. That’s a common coping mechanism, but it’s a primitive one. It’s a bad one.”

While tools such as masks, antiviral drugs and home rapid tests exist to help keep people safe, access to those things is not equal for all.

And not everyone has the option to work remotely or take other individual precautions to avoid infection, Gonsalves pointed out.

“Most people have to go to work. Many people who kept us safe in the darkest days of the pandemic — people working in grocery stores and Amazon warehouses — they don’t have any choice,” he said. “Suppose you’re living on minimum wage or less. Suppose you’re living in a crowded household where, if one of you gets sick, it’s going be hard to stop the rest of you from getting sick. Suppose one of the households has an elderly [member] who hasn’t gotten boosted yet. Children under 5 still can’t get vaccinated.

“There are plenty of people who are under-protected. So we’re setting pandemic policies based on people with resources as the benchmark. It might make sense to set policy based on the most vulnerable in Connecticut.”

Some residents who are immunocompromised have given up hope on the community’s willingness to protect them.

“Right now, I’m hedging my hope on improved vaccines, or the maybe fairytale that this pandemic might wind down, like the Spanish flu did,” White said. “But from the behavioral perspective and encouraging human beings to rally together, I’ve lost hope on that.”

Health officials continue to urge mask wearing and other precautions, especially during surges.

“What I will say is, I haven’t stopped wearing my mask,” said Shariff, the Hartford HealthCare physician. “I continue to social distance. I continue to wash my hands. These are cardinal rules of general health and disease transmission that I don’t think should just come to a halt.”

Gonsalves suggested actions to gently mitigate risk, such as donning masks in municipal buildings and on public transit.

“We’re not talking about closing venues; we’re not talking about closing schools,” he said. “Show some leadership and say, ‘I’m not going to mandate masks in restaurants — because that’s probably the least of our problems, people are not going to eat and wear masks — but in places like clubs or bars, public transportation, city halls and town halls around the state.’

“You’re trying to protect your neighbor. Wouldn’t that be the nice thing to do?”