HHS releases new report highlighting complexities of Long COVID from patient perspective

There are many challenges for those living with Long COVID and caring for them, according to a new federal government study.

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“It gets to the point where I cannot breathe at all,” said Ashley Strobridge, Long COVID patient.

READ: Study: COVID-19 symptoms persist in many after 2 years

Experts estimate nearly 30 percent of those who’ve had COVID-19 may have Long COVID symptoms, as well. They say these symptoms can be mild, while others can be very severe and debilitating.

“There’s so much debt we’re having to incur just for the hope of being well one day,” said Cynthia Adinig, Long COVID patient and advocate.

Patient stories about Long COVID are the focus of this latest research released by the U.S. Department of Health and Human Services (HHS).

The new Health+ Long COVID report was commissioned by HHS and produced by Coforma, an independent third-party design and research agency. In highlights personal stories from dozens of Long COVID patients and caregivers from over 1,000 hours of interviews, workshops and research.

“This is a way to bring in the patient experience. The person with Long COVID knows best, what the problem is, and how to describe it and explain it,” Rear Adm Michael Iademarco, Deputy Assistant Secretary for Science and Medicine.

The Washington News Bureau talked exclusively with Rear Admiral Michael Iademarco, Deputy Assistant Secretary for Science and Medicine at HHS, about the report findings.

“Long COVID is not one thing, it’s real. It’s not one thing, it’s many things and because it’s new, it’s difficult to rapidly understand,” said Iademarco.

The report outlines what it calls an “ideal journey” for someone with Long COVID showing the progression from initial symptoms and medical diagnosis to insurance coverage and treatment. But the actual journey described by patient stories reveals some of the barriers, frustrations, and setbacks. Iademarco said HHS is taking steps to address those challenges.

“When you read it, though, it’s very, relatively simple, and straightforward, but it’s quite long. And about half of it has to do with our approach to health and the health care system and not long COVID specifically,” said Iademarco. “The way the federal government at this point is focused on doing that is through coordination.”

HHS is leading this response through the Long COVID Coordination Council, which has leaders from 14 federal departments and agencies.

“It’s the coordination and this initial look and inventory of all existing federal services,” said Iademarco. “Now we have to go further, we have to understand the gaps and try to close those gaps through further coordination.”

READ: China announces 1st COVID-19 death in almost 6 months

This report also offers several recommendations. They include increased access to disability benefits and assistance programs, Long COVID guidance for schools and workplaces and updated plan guidelines from insurance providers that align coverage with medical treatments.

“That’s what we’ve been yelling and screaming for two years,” said Adinig.

Cynthia Adinig is a Long COVID patient and advocate who testified before Congress about her journey earlier this year.

She believes awareness about Long COVID hurdles should have come much earlier.

“But I feel like there hasn’t been the level of urgency in putting together these programs nor the solutions,” said Adinig.

As federal agencies work through recommendations, Adinig believes educating healthcare providers about Long COVID has to go beyond the initial diagnosis.

“We have to factor in education on biases and then we have to make sure that there’s some sort of monitoring, so that disparity doesn’t continue to go on,” she said.

Adinig also wants improved access to Long COVID care for children like her seven-year-old son, too.

“There was a six-month wait,” said Adinig. “He still has not seen the post COVID clinic, he still hasn’t even been there not one time.”

Moving forward at the federal level, Iademarco said the next major focus is prevention.

“With Long COVID we have an emerging health care approach and we need to strengthen the prevention approach and we need to develop the public health approach,” said Iademarco.

READ: WHO reports 90% drop in world COVID-19 deaths since February

HHS is also requesting $750 million from Congress for Long COVID research, treatment, and awareness.

You can view the entire report, here: Health+ Lyme Disease Human-Centered Design Report (hhs.gov)

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