25 Investigates: Federal dollars and support on the way for estimated 8 million COVID long-haulers

BOSTON — Fatigue, difficulty breathing, headaches, brain fog and nausea. Those are just some of the symptoms COVID long-haulers are living with.

Fourteen-year old Brody Gillingham is among them.

When 25 Investigates first caught up with Brody in May 2021, his doctor had just confirmed he was among the growing number of Americans known as “long-haulers,” those who suffer from the long term effects of coronavirus.

At the time, Brody experienced extreme fatigue, brain fog and breathing struggles, all symptoms that came on more than two months after he and his family contracted COVID-19.

But his long COVID evolved. Fatigue and labored breathing were replaced by debilitating headaches that first came on last fall.

“It was like third period in, and I just got a really bad headache,” he told 25 Investigates. “So I went down to the nurse. It was like a really sharp pain, and then I started throwing up a lot.”

Brody’s mom Nicole Bradley says her son’s life has been a “roller coaster.”

“So many highs and celebrations of wins, but a lot of lows and a lot of uncertainty, which is hard,” said Bradley.

Now, there is a push in Congress to expand access to much needed help and treatment for long-haulers.

“I saw there was a growing long-hauler community organizing online. I was also meeting long-haulers, and it was really clear to me that this growing community was not being taken seriously. They were struggling to have their concerns heard, legitimized and treated,” said Rep. Ayana Pressley (D-MA).

To that end, she has introduced the Targeting Resources for Equitable Access to Treatment for Long COVID Act, or TREAT Long COVID ACT.

“We see them. Their symptoms and what they’re experiencing is not imaginary. It is as real as they are,” she said.

It’s estimated there are currently about 8 million COVID long-haulers in the United States, according to the American Academy of Physical Medicine and Rehabilitation (AAPM&R).

But, as Rep. Pressley pointed out, that figure represents a conservative estimate of 10 percent of documented COVID survivors nationwide, and the actual number of long-haulers could be much higher.

The TREAT Long COVID Act would provide up to $2 million in grants for community health centers to treat people where they are and provide funding for new long COVID clinics. It largely focuses on expanding treatment for long COVID patients, according to Pressley’s office. Currently, there is no federal program focused on treatment for COVID long-haulers.

Two years ago, Congress did approve funding for long COVID research, but did not address clinical care and treatment.

“Really the goal here is that everyone have access to treatment within their reach,” said Rep. Pressley.

Though Brody has seen several specialists through Boston Children’s pediatric post-COVID clinic, his mother says there simply aren’t enough options for people like her son and welcomes the TREAT Long COVID Act’s component to add community clinics.

“To be able to have access for people like Brody, children and adults anywhere in the community is so important,” said Bradley.

Brody returned to in-person school this year and has even started playing some of his favorite sports again.

But symptom flare-ups have caused him to miss more than 40 school days this year already. And recently he developed a new symptom of long COVID.

Recently, his heart rate dropped and he became hypothermic. He was hospitalized again.

Doctors told him it’s yet another common symptom of long-COVID.

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