Scripps, UCSD focus on “long haul” COVID-19 symptoms

Scripps Health is the latest local health provider to tighten its focus on patients whose COVID-19 symptoms linger, joining UC San Diego Health in creating its own clinic to offer holistic services to patients whose coronavirus cases have turned into medical marathons.

No one knows quite how many of the 30.3 million Americans so far infected by COV2 are among those often called COVID-19 “long haulers.” One recent estimate from an international research effort called the COVID Symptom study found that roughly one in eight of the more than 4,000 people who responded to its smartphone-based surveys had symptoms for four weeks or more.

One in 20 said their symptoms, which range from fatigue and shortness of breath to headache and cognitive dysfunction, lasted eight weeks or more.

One in 40 said their condition still had not cleared up 12 or more weeks after symptoms first appeared.

If those estimates are accurate, then about 1.3 million Americans could be expected to have symptoms that last for at least eight weeks, and nearly 700,000 can expect the fight to continue past 12 weeks.

That’s more than 6,000 people among the more than 270,000 infected so far in San Diego County who are likely to continue coping with a panoply of life-altering and so-far-unexplained medical problems for months after they tested negative for infection.

This week brought a bit of hope as COVID survivors shared stories of many long haul symptoms mysteriously resolving after coronavirus vaccination. Anecdotal estimates speculated that this might be the case for 40 percent of cases or more, though scientifically vetted estimates are not yet available.

Regardless, the health care system is increasingly realizing just what it’s in for as so many come forward asking for help unravelling — and hopefully explaining — the maddening malaise that often prevents a full return to normal living.

Health care systems are starting to get strategic about managing these patients, with Scripps Health set to announce a new COVID Recovery Program that will focus on those with long-lasting symptoms formally called Post-acute COVID-19 Syndrome or “PACS.”

Scripps is set for a soft launch of its program on Tuesday. UC San Diego Health created a similar Post-COVID Care program about six months ago.

Both take similar approaches, designating medical teams to work with patients who have had positive coronavirus tests and symptoms that have lasted four weeks or longer regardless of whether their illness required a hospital stay.

With the expected volume of long-recovery patients, Scripps has created clinics led by Dr. Bradley Patay in Torrey Pines and Dr. Noemi Doohan in Hillcrest. For the moment, only pre-selected patients who have primary care doctors in the Scripps system will be accepted in April, but access is expected to increase in May, based on patient demand.

Long COVID-19 affects a range of vital organs throughout the body including the heart, lungs, brain and gastrointestinal tract.

Thus far, no one has fully explained why the majority see their symptoms resolve relatively quickly, but a few are destined for week after week of sometimes-severe complications. The most common, according to one recent study, are fatigue, shortness of breath, an altered sense of taste or smell, muscle or joint pain, weakness, cough, headache, chest pain, hair loss, cognitive dysfunction, nasal congestion, difficulty sleeping, dizziness, gastrointestinal issues and abnormal heart rate or rhythms.

New research papers appear daily, providing insights that, by themselves, prove nothing. It is the synthesis of this torrent of new information that will generally reveal the syndrome’s causes and which treatments are most likely to help patients recover.

Clinics like those at UCSD and Scripps are designed to concentrate the most-current knowledge about long COVID-19 in one place, making it easier to pursue an individualized treatment plan for each patient and to update them as better information surfaces from the research world.

“We’re trying to bring the best of what we learn from across the country and apply it in a real-world setting for the patients,” said Dr. Anil Keswani, chief medical officer of ambulatory care at Scripps.

UC San Diego has been taking that approach since last summer and has now treated about 450 long COVID-19 patients in its post-COVID-19 clinic, said Dr. Lucy Horton, who runs the clinic with Dr. Michele Ritter, a fellow infectious disease specialist.

Because these patients often must undergo many diagnostic tests and specialist visits to try to get to the bottom of wide-ranging sets of symptoms, it is essential to have a specialist coordinating care, pulling the pieces together into a holistic picture of each patient’s condition, Horton said.

“Our intention is always that the patient is at the center of what we do, and we don’t want to lose sight of that as we are taking an interdisciplinary approach,” Horton said. “It’s not uncommon for long-haul patients to feel like they are alone, or are struggling to get connected to care.”

Rachael Lackner of San Diego has now had a range of COVID-19 symptoms for nine months including headaches, fatigue, shortness of breath, deep bouts of depression and severe chest pain.

She said that she has been engaged in a never-ending series of specialist visits that have left her wanting a more coordinated system. But that desire, she added, has a lot to do with finances. While the Cares Act, federal legislation passed in 2020 to fight the pandemic, mandated that health insurance companies fully cover care for those with active illness, most do not consider chronic COVID-19 to qualify for 100 percent coverage. While she did not get a bill for an emergency room trip in June, it was back to her plan’s copays and deductibles, Lackner said, when severe chest pains sent her back to the ER in December.

Though she said she understands that copays are a normal part of using one’s health insurance, the 27-year-old freelance marketing and social media consultant said that, because nobody really understands what causes this syndrome, it can be difficult to see the direct benefit of so many tests and visits, each which comes with a $40 or $80 copay.

She wants to do her part helping advance medical knowledge about how the syndrome works, she said, but the costs just keep adding up.

Recently, she said, a neurologist ordered a $350 CAT scan of her brain that she is not sure she’s going to get.

“I still have student loans, a car loan, I work 45 hours a week to make ends meet, so it’s hard to keep paying when I don’t even know if all of the tests will tell me anything,” she said.

Beyond providing for a more integrated experience, Lackner said she hopes that the new long COVID-19 clinics starting to pop up in San Diego bring greater opportunity to participate in the clinical trials that will ultimately deliver the answers that everyone seeks. Trials, she added, often pay for the diagnostic tests and office visits that they require, a significant boon to anyone feeling coronavirus’s financial pinch.

“I want to get both myself and other people answers,” she said. “But I’m not totally sure I can pay for it all on my dime.”

In the meantime, she said, she intends to test the theory that vaccination might make at least some symptoms clear up. She had an appointment for her first shot on Saturday.

Keswani, the Scripps medical director, said that there is a definite desire locally to embark on long COVID-19 research, though that kind of work needs financial backers. Scripps, he said, is preparing to apply to participate in a new PASC Initiative from the National Institutes of Health. Congress approved $1.15 billion for a prolonged research effort, spread over four years, to determine causes of and treatments for PACS.

According to San Diego County’s latest count, about 910,000 of San Diego’s 3.3 million residents are covered by Medi-Cal, the state’s health insurance program for disadvantaged residents. Scripps said its COVID Recovery Program will serve those on Medi-Cal at its Hillcrest location. It was not clear whether the UCSD post-COVID program also covers Medi-Cal enrollees,

Scripps will include those with Medi-Cal health coverage in its COVID Recovery Program. It was not clear if UCSD also includes the last-resort coverage.