The costs for these patients with post-acute COVID-19 syndrome, often referred to as “long-haul”, can increase with their persistent illnesses and the confusion surrounding their care.
For a Californian mother and wife, the cost was too high. Heidi Ferrer was a screenwriter, best known for her work on the popular television series “Dawson’s Creek”. She struggled with alcoholism before sobering up for almost four years and supporting others in recovery. Heidi blogged and started writing memoirs. She was also very active in raising awareness of a rare form of childhood scoliosis that plagued her son.
Her husband Nick Guthe described her as a dedicated and selfless person, full of life, physically active and mentally strong. She made him laugh endlessly with her great sense of humor.
“She loved her family. She loved her son, ”Guthrie said in an interview with KPIX 5.
Ferrer was infected with COVID-19 at the start of the pandemic before routine testing for the virus began. When the infection seemed to subside, she began to experience persistent and debilitating complications.
“She started having unexplained cramps, problems digesting food,” Guthe said.
Ferrer developed excruciating pain in his feet, a racing heart, neurological tremors, and a strange vibrating sensation in his chest. She also spoke of a brain fog enveloping her once sharp mind.
She has visited countless doctors and specialists. Her husband said it was frustrating. No one could define what was going on with his health or help him. The medical bills started to pile up. She told specialists that she had been infected with the virus, but she could not prove it.
“We paid out of pocket for a lot of tests because she didn’t have a positive COVID test,” Guthe explained.
Thirteen months later, Ferrer was bedridden, unable to walk, eat, or even read a book.
“She really saw an incredibly terrible quality of life take shape for her,” her husband said.
Ferrer died by suicide. Guthe told KPIX 5 that his family is devastated.
“Right now I’m thinking about her every minute of every day,” he said.
To date, approximately 34 million Americans have been infected with the virus. Of these, more than 25% are thought to have long-standing COVID. Some of these people had mild cases or no symptoms.
The syndrome is not well understood. While there are many theories about the underlying mechanism behind the persistent symptoms, there is no real diagnostic test or cure. Patients and their families are also grappling with a growing sense of financial fear.
“Can you imagine going to see all these doctors, being in debt and still without answers? Diana Berrent exclaimed. She leads Survivor CORPS, a local effort to mobilize survivors and advocate for better care.
Berrent says his members tell horror stories about their medical bills.
“They are still being gassed by doctors who don’t know how long COVID is, who don’t know what to look for and they don’t have answers,” Berrent said.
Guthe said the day he reunited with his wife in May and called 911, the ambulance took her to the emergency room of a major Los Angeles medical center. After speaking to the ER doctor about Ferrer’s long COVID symptoms, the doctor expressed confusion.
“He looked at me and said ‘What’s a long COVID? I’ve never heard of it, ”said Guthe. He is determined to educate doctors and others about the syndrome.
Regarding medical bills, in order to be paid, doctors choose a diagnostic code corresponding to the patient’s condition and a billing code according to the complexity of the visit. The problem with the long COVID is that there is no permanent diagnostic code currently in use for it. While one of them is slated to go live in October, KPIX 5 has been told that the lack of clarity and confusion is causing chaos.
“There are billing discrepancies and people are getting slammed for insane costs that are just impossible. And that really adds insult to injury, ”Berrent said.
To date, because there is no cure, doctors can only treat the more than 50 symptoms reported. Insurers decide which treatments are medically necessary and covered by their plans.
“Now do you have that extra burden of the sequel?” Said Rosie Flores, a long COVID patient from South Bay. “Fortunately, I have insurance that helps. But what about when it doesn’t cover it? What do you think if I lose my job?
Flores’ post-COVID symptoms include chronic fatigue, hair loss, and brain fog.
“It damaged me,” she told KPIX 5.
There is now hope in areas where long COVID clinics have been set up. These clinics are full of specialists from multiple disciplines, who use a SWAT medical team approach.
A new long COVID clinic has just opened at Stanford Hospital and Flores is one of the clinic’s patients.
“This is an active area of investigation,” said clinic co-founder Dr. Linda Geng.
Geng is in the Primary Care and Population Health Division with experience in solving medical mysteries and undiagnosed illnesses.
“Our job is to try to listen to patients and see how we can help them,” added co-founder Dr. Hector Bonilla, associate professor of internal medicine and infectious diseases.
At the Stanford Clinic, patients have the opportunity to participate in research that will accelerate understanding of the syndrome.
“We are all learning about this condition, so we can better define it,” Geng said.
Ferrer tried to enter a long COVID clinic in Southern California, but doctors didn’t think she had ever had COVID. Just before she committed suicide, a sophisticated test finally proved the opposite to the satisfaction of her primary care physician who ultimately referred her to the clinic. Unfortunately, the letter of recommendation arrived too late for her.
Another looming blow for patients and their families is the cost of long-term disability for those with long-standing COVID. The estimated price to date according to the Harvard report: 2.6 trillion dollars.