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'Long COVID' Patients Face Daunting Symptoms, Expenses; Syndrome Not Well Understood

SAN FRANCISCO (KPIX 5) -- Harvard economists estimate if the pandemic ends in the fall, the cost of COVID will be a astronomical $16 trillion. Included on that spreadsheet is a certain group of patients who are suffering from the lingering symptoms of a COVID infection, a syndrome is now known as long COVID.

The costs for these patients suffering post-acute COVID-19 syndrome, often known as "long-haulers," may grow along with their persistent ailments and the confusion over their care.

For one California mother and wife, the cost was too high. Heidi Ferrer was a screenwriter, known for her work on the popular television series "Dawson's Creek." She battled alcoholism before going nearly four years sober and supporting others who were in recovery. Heidi blogged and began to write a memoir. She was also very active in raising awareness for a rare form of infantile scoliosis which afflicted her son.

Her husband Nick Guthe described her as a dedicated and altruistic individual who was full of life, physically active, and mentally sharp. She made him laugh endlessly with her terrific sense of humor.

"She loved her family. She loved her son," said Guthrie in an interview with KPIX 5.

Ferrer was infected with COVID-19 early on in the pandemic before routine testing for the virus began. When the infection appeared to subside, she began to experience lingering, debilitating complications.

"She started getting unexplained cramping, problems digesting food," said Guthe.

Ferrer developed excruciating pain in her feet, a racing heart, neurological tremors, and a strange vibrating sensation in her torso. She also talked about a brain fog enveloping her once sharp mind.

She went to countless doctors and specialists. Her husband said it was frustrating. No one could define what was going on with her health or help her. The medical bills began to pile up. She told the specialists that she had been infected with the virus, but she could not prove it.

"We paid out-of-pocket for many, many tests because she didn't have a positive COVID test," explained Guthe.

Thirteen months later, Ferrer was bedridden, unable to walk, enjoy food, or even read a book.

"She really saw an incredibly terrible quality of life coming down the road for her," recounted her husband.

Ferrer died by suicide. Guthe told KPIX 5 that his family is devastated.

"Right now, I think about her every minute of every day," he said.

To date roughly 34 million Americans have been infected with the virus. Of those, it is believed more than 25% have long COVID. Some of these individuals had mild cases or no symptoms at all.

The syndrome is not well understood. While there are many theories about the underlying mechanism behind the lingering symptoms, there is no true diagnostic test, and no cure. Patients and their families are also saddled with a growing sense of financial dread.

"Imagine having gone to all these doctors, being in debt and still have no answers?" exclaimed Diana Berrent. She heads up Survivor CORPS, a grassroots effort to mobilize survivors and advocate for better care.

Berrent says her members are telling horror stories about their medical bills.

"They are still being gaslit by doctors who don't know what long COVID is, who don't know what to look for and they have no answers," said Berrent.

Guthe said on the day he found his wife in May, and called 911 the ambulance brought her to the emergency room of a large medical center in Los Angeles. After he told the ER doctor about Ferrer's long COVID symptoms, the physician expressed confusion.

"He looked at me and said 'What's long COVID? I've never heard of it,'" lamented Guthe. He is intent on educating doctors as well as others about the syndrome.

As for the medical bills, in order to get paid, doctors pick a diagnosis code to match a patient's condition and a billing code based on the complexity of the visit. The problem with long COVID is there's no permanent diagnostic code now in use for it. While one is expected to be activated in October, KPIX 5 was told that the lack of clarity and confusion is causing chaos.

"There are discrepancies in the billing and people getting slammed with insane costs that are just impossible. And it's really adding insult to injury," said Berrent.

To date, since there is no cure, doctors can only treat the more than 50 reported symptoms. Insurers decide which treatments are medically necessary and covered by their plans.

"Now you have this added burden of what's next?" said Rosie Flores, a long COVID patient from the South Bay. "Fortunately, I do have insurance that helps. But what about when it doesn't cover it? You think about what if I lose my job?"

Flores's post-COVID symptoms include chronic fatigue, hair loss, and brain fog.

"It's damaged me," she told KPIX 5.

Now there's hope in areas where long COVID clinics have been set up. These clinics are packed with specialists from multiple disciplines, who employ a medical SWAT-team approach.

One new long COVID clinic just opened at Stanford hospital and Flores is one of the clinic's patients.

"It is an active area of investigation," said the clinic's co-founder Dr. Linda Geng.

Geng is in the division of Primary Care and Population health with a background in solving medical mysteries and undiagnosed diseases.

"Our job is to try to listen to patients and see how we can help," added co-founder Dr. Hector Bonilla who is an associate professor of internal medicine and infectious diseases.

At the Stanford clinic, patients are offered the opportunity to participate in research that will accelerate insights into the syndrome.

"We are all learning about this condition, to be able to better define it," said Geng.

Ferrer tried to get into a long COVID clinic in Southern California, but doctors did not believe she ever had COVID. Just before she took her own life, a sophisticated test finally proved otherwise to the satisfaction of her primary care physician who finally referred her to the clinic. Tragically the referral letter came too late for her.

Another blow looming for patients and their families is the cost of long-term disability of those suffering long COVID. The estimated price tag to date according to the Harvard report: $2.6 trillion dollars.

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