The Long and Uncertain Path Ahead for Veterans Waging War Against Lingering COVID

It began with mild congestion and the occasional sneeze.

But soon came a loss of appetite, shortness of breath, chest pains and insomnia. The week of sleepless nights was especially difficult, leaving Isaiah Smith, 26, exhausted as wave after wave of COVID-19 symptoms washed over him.

Finally, at 2 a.m., with his heart practically beating out of his chest, the former senior airman from Merrillville, Indiana, called for an ambulance to get him to the hospital fast. 

"I was kinda scared because all you see on the news is what was going on if people caught it. I wasn't expecting to catch it. … I was doing everything I could to avoid it," said Smith, who regularly wore a mask and kept hand sanitizer in his car.

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It was early November 2020, before vaccines were widely available across the United States, and only a week after Smith, the young and otherwise healthy Air Force veteran, had tested positive for COVID-19 amid the surging Delta variant.

"When they took me to the hospital, we actually waited outside in the ambulance because they had no room," said Smith, who spent a total of eight hours at the hospital before being discharged. Although doctors at the time told him there was little they could do because his case was "mild," he returned a few days later with a tightness in his chest.

Smith is one of more than a half million veterans the Department of Veterans Affairs believes have had COVID-19, and one of about 23,000 veterans confirmed with a long COVID diagnosis, according to VA press secretary Terrence Hayes. 

Long COVID, also known as long-haul COVID or post-COVID-19 condition, can be wildly different for patients. Symptoms may range from difficulty breathing to muscle aches to other serious conditions, including mental health disorders and suicidal thoughts, that may last weeks, months or longer. 

The VA has not yet declared that veterans are specifically more susceptible to poor health conditions developed from long COVID, but "their underlying medical conditions, their age and their risk factors … might skew them from the general population," Dr. Elizabeth Brill, a VA COVID expert, told reporters during a VA press briefing April 25.

While the VA is still trying to figure out whether veterans will face a heavier burden, and whether toxic exposures or the toll of combat will add long COVID to the list of conditions exacerbated by service, thousands of former troops have participated in VA research that demonstrated veterans with long COVID are at an increased risk of other serious illnesses. They are subsequently receiving treatment through a patchwork of 17 VA long COVID care programs, which offer a range of treatment options that parallel disparate practices being used in non-military medical networks. 

These diverse VA programs, some fully online and some entirely in-person, differ in part because medical researchers are still trying to solve the puzzle of the science behind long COVID. How successful they will be in helping combat the lingering effects of COVID among veterans is still very much in doubt in what are still the early stages of the fight against long COVID.

The VA Long COVID Program

Smith's long COVID symptoms developed shortly after he began his two-week quarantine, with chest pains and shortness of breath continuing into mid-2021. The headaches persist to this day. Even after he was finally able to get the vaccine, the doses did little to minimize his symptoms. 

Beginning in January 2021, Smith started to receive treatment for his symptoms at the Jesse Brown VA Medical Center in Chicago. He still gets treatment there, sometimes making the hour-long drive to the facility, while regularly messaging his care provider between visits.

"They're pretty much trying everything in their power to get me to feel better," Smith said.

The Jesse Brown VA Medical Center is one of 17 VA facilities across the country with an established long COVID care program, according to VA officials, with at least an equal number more in the works. The program brings together specialists across medical fields, including cardiologists and psychologists, to help treat patients experiencing long COVID.

"Patients pretty consistently tell me, 'My family doesn't believe what's going on; they think I'm making it up,'" Dr. Jacqueline Neal, a physiatrist who specializes in physical medicine and rehabilitation at Jesse Brown and works with that facility's long COVID care program, told Military.com. "I get from the patients ... an overwhelming sense of relief to be able to have a place to talk about what symptoms are going on."

The most common complaint she hears is fatigue, though some also have developed mental health problems.

"We are seeing patients improve," Neal said. "The question that I have and the rest of us who are taking care of long COVID patients [have] is, is it because we're doing something ... or is this just the natural progression of long COVID? And we don't know yet, because we just don't have enough research done yet. We're still so early on in learning about this disease."

Long COVID patients at Jesse Brown must receive a referral from their primary care provider at least 12 weeks after their initial COVID diagnosis to visit the facility. They go through an interview that can last up to an hour and a half that helps the VA doctors figure out what their symptoms are and if they are changing. The facility has now seen nearly 150 patients since the program began in 2021, including telehealth referrals from other medical centers without long COVID programs. 

Other facilities that have long COVID programs are creating their own ad hoc approaches to combating the disease, trying to fill the vacuum left by insufficient research. 

"Each of the programs right now are quite different to be honest," said Neal. She added that each program can be led by various medical specialists, offer a range of in-person or telehealth appointments, and follow different patient referral patterns.

According to Hayes, the approximate number of veterans being seen for long COVID symptoms across all of these sites is only 4,300, a fraction of the roughly 23,000 veteran patients confirmed with the illness. Not all veterans with long COVID are even aware these programs exist.

"In my mind, I have absolutely no idea that that was starting, let alone available. I certainly haven't been notified," said Ciel Downing, 63, an Army veteran from Oregon.

A Long Road to Resolving Long COVID

Downing first got COVID around the July 4th weekend in 2021 and almost immediately developed severe symptoms. Extreme fatigue, burning lungs and bile in her throat were the most prominent. 

"By November, I was still really struggling and was only getting about two good days a week ... and I thought, 'This is getting bad,'" she said.

As a rural vet living alone, it became increasingly challenging for her to do even basic tasks like raking leaves or feeding her dog. After a second bout of COVID during the Omicron variant surge earlier this year, Downing decided to make a change.

"I'm not a fatalist by any means at all. I'm an extraordinarily strong person normally," said Downing, who became overwhelmed trying to uncover what was going on with her body.

In March, she called her local veterans service officer, who drove her nearly two hours to the closest VA facility, the Portland VA Medical Center, for treatment. Downing thought that the VA providers were very kind, but did not offer her any long-term solutions. The Portland VA is not one of the 17 VA facilities currently running a long COVID program.

Downing attributes her preexisting conditions, which research suggests greatly increase the odds of getting long COVID, to her basic training in the 1980s at Fort McClellan, a former military base in Alabama, which closed in 1999 and has since been identified as a source of potential toxic exposure.

"I can't possibly imagine any other reason. I know so many other people who have got it [COVID], and they are not going through this long, long experience," Downing said.

Outside of the VA, other facilities have also created post-COVID care centers as a way to help treat patients with the illness. Since long COVID affects all patients differently, facilities like the University of Chicago Medicine Post COVID Recovery Clinic and the Mount Sinai Center for Post-COVID Care offer patients individual treatment plans to recover from the disease.

There are roughly 218 post-COVID care centers in the United States, according to Survivor Corps, a grassroots patient advocacy group that serves as a comprehensive source of COVID-19 information. 

The map on its website offers detailed state-by-state information on the network of existing long COVID care facilities available across the country, except in the Dakotas. But conclusions on the effectiveness of these treatment centers are still being formed.

"So, the best thing that seems to come out of these programs is the reassurance to people that they are indeed not crazy," said Survivor Corps founder Diana Berrent, who described the network of post-COVID care centers as inefficient with inherent equity issues. 

She is now pushing for the creation of new clinical facilities that would ensure accountability, collaboration and transparency among care centers, something President Joe Biden also discussed in an April statement on long COVID.

The journey ahead for veterans to find answers to their countless remaining questions about long COVID remains uncertain, even as the VA touts its strong efforts to research the deadly virus.

"The VA has the largest integrated electronic health care records system in the U.S.," said Dr. Ziyad Al-Aly, chief of research and development for the VA St. Louis Health Care System and a lead researcher on many of the VA's long COVID studies. "That really enables us to do these large and well-powered studies involving a lot of patients with COVID, a lot of veterans with COVID."

VA studies -- with mostly veterans as participants -- have found patients to be at an increased risk of long-term cardiovascular disease, diabetes and mental health disorders from long COVID. Research conducted by groups outside of the VA, on non-veteran populations, have found similar results.

A new study by Al-Aly, published May 25, centers on breakthrough cases among vaccinated participants and found that vaccination alone will not reduce long-term health consequences of long COVID.

Veterans Affairs Secretary Denis McDonough, speaking during the April VA press briefing, pointed to that research as potentially yielding answers for the millions of Americans who are and will continue to struggle with the long-term effects of COVID infections that seemingly won't go away.

"The work we do at VA and the lessons we learn at VA will inform and improve how the whole country responds to long COVID," he said. "It will help the nation care for veterans and non-veterans alike."

-- Jonathan Lehrfeld is a fellow at Military.com. Follow him on Twitter @lehrfeld_media.

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