By Kristen Hwang. CalMatters. Bay City News.
The fight of two years ago does not end today, we are facing Long COVID in California. COVID-19 left Mindy Lym with such severe sensitivities to light and sound that she and her partner left their home in San Francisco and moved to rural Washington, where there were fewer triggers. In the past two months, he has paid more than $7,500 out of pocket for medical care. Although he can afford it, he knows that few people can do the same.
Stephen Mintz receives just $60 a week on disability, which he receives after chronic fatigue from COVID-19 prevented him from working regularly. He spent all his savings and borrowed money from his family. Without more aid payments from the state, she doesn't know how she'll pay her bills.
COVID-19 sent Janine Loftis to the hospital in 2020. She is reliant on a caregiver after persistent symptoms like brain fog, pain, and fatigue prevent her from cooking or cleaning. But when Loftis' caretaker went away for a month, shortages plaguing the health care workforce made it impossible to find a replacement.
These are three of countless stories of prolonged COVID among Californians. Recent CDC surveys suggest that 5.5 percent of California adults, approximately 1.5 million people, currently experience the ill-defined, mysterious, and often debilitating collection of symptoms that make up long-term COVID. Most of them, 82 percent, have some limit on their activity.
While most of society is eagerly rushing back to pre-pandemic life, these patients, known as "long-lived people," have largely been left behind by their communities, doctors, and lawmakers.
"It's a pandemic of loneliness, social isolation and rejection," said Ibrahim Rashid, a long-distance traveler and founder of Strong Haulers, a starter app designed to make it easier to manage chronic symptoms.
California long-distance carriers can face years of waiting times to get into specialty clinics. They often have to fight for disability payments or be taken seriously by doctors. Lawmakers, despite holding hearings on the issue last year, have not tabled any proposals this session to help long-haul carriers.
A budget proposal to increase the capacity of long-term COVID clinics at University of California health centers fell through last year, and it's unlikely that, with the expected state budget shortfall, anything new will get off the ground now.
Former state Sen. Dr. Richard Pan, who co-chaired a special hearing on prolonged COVID last year, told CalMatters in February before the deadline to introduce new bills that he hoped "people are paying attention to this." because prolonged COVID will put new stressors on the health care, mental health and disability systems.
The Senate Special Committee on Pandemic Emergency Response was not reinstated this year. A spokesman for Sen. Josh Newman, a Fullerton Democrat who chaired the committee last session, said there hasn't been any conversation about prolonged COVID since last year.
Patients at the forefront
Instead, the groundwork for the policy has fallen to two people: Lisa McCorkell, co-founder of the Patient-Led Research Collective who has suffered from long-term COVID since March 2020, and Art Mirin, whose daughter has a similar postviral condition called encephalomyelitis. myalgia/chronic fatigue syndrome.
Together, McCorkell and Mirin wrote budget proposals, solicited letters of support from disability advocacy groups, and met with lawmakers and staff. They are doing the job that power politicians pay lobbyists millions of dollars to organize, so far without success.
"One of the big problems with long-term COVID ... is that the people who are most motivated to do something about it have the least amount of energy and ability to cause a scene," McCorkell said.
Despite struggling with postural orthostatic tachycardia syndrome, a blood circulation disorder that can cause fatigue and brain fog, as well as other disabling symptoms, McCorkell has testified before Congress on long-term COVID, conducted research, and lobbied for California to do more for the population.
She and Mirin wrote last year's budget proposal for the state to fund research, training and treatment centers on UC medical campuses and other academic centers. Mirin said it's been a challenge to find a champion for this problem.
"People will say they support one thing or another, but when it comes to an official public request, other things have a way of coming into play," Mirin noted.
Although five UC medical campuses have large COVID clinics, demand far exceeds capacity, said Dr. Anne Foster, director of clinical strategy for UC Health Systems.
"There are a lot of patients out there," Foster said. UC Health supports McCorkell and Mirin's proposal, but no new state funding is available, he stressed.
Officials with the California Department of Public Health plan to create a new COVID-19 Control Branch to monitor variants and outbreaks and support ongoing COVID investigation, said State Epidemiologist Dr. Erica Pan. The department is using some of the money from the last year, as well as seed capital from the state's $1.8 billion long-term COVID-19 preparedness plan to open the branch. However, the proposed budget cuts cause ongoing funding to remain.
“We are looking at that and trying to advocate for continued remedies,” Pan explained.
With no additional money from the state, Foster said UC Health has focused on developing a free continuing education training program for physicians on best practices for treating long-term COVID patients.
McCorkell and Mirin say the training modules aren't perfect, but they are an important resource for primary care physicians, especially considering that most people in the state live too far from a specialty clinic to get help.
Many doctors have not heard of prolonged COVID
Fresno's Stephen Mintz is one such patient who lives too far from specialty care.
Mintz avoided COVID-19 for more than two years, but in August he went to a bar to celebrate his 59th birthday. That is where you most likely contracted the virus. By September, Mintz discovered that he didn't have the physical or mental stamina to do much of anything. After two and a half hours of activity, his limbs grew heavy and his thoughts confused.
"You could almost set a clock," Mintz said. "Suddenly it would be very difficult to put one foot in front of the other."
In January, Mintz was stacking chairs at a local bar where he works as a security guard. After 10 minutes he became dizzy and could no longer raise his arms. It's a common condition associated with prolonged COVID called post-exertional malaise: overcoming fatigue can make symptoms worse.
"I actually cried then. I've been depressed and frustrated about this," Mintz said. "I couldn't believe it was so weak."
Mintz went to his primary care doctor in Fresno for help. He said he thought he had COVID for a long time and was met with skepticism.
"Her first reaction was that she hadn't really heard of it," Mintz said.
In his disability paperwork, Mintz said the doctor wrote "malaise and short-term amnesia" because he didn't know how to diagnose Mintz and told him to call UC San Francisco, nearly 200 miles away, for advice.
"The doctor said, 'Um, well, if you lived here you could be part of a research study,'" Mintz said.
It is a common experience among people with long-term COVID-19. Although the pandemic has brought post-viral illness to the fore, most doctors still don't have the expertise to treat the set of more than 200 symptoms that make up long-term COVID.
Each new variant of COVID-19 also changes which symptoms are most common, making it doubly difficult for the average primary care physician to diagnose, said Dr. Nisha Viswanathan, a primary care physician at UCLA's long COVID clinic. Health. The "fuzzy nature" of many symptoms, such as fatigue and insomnia, also leads to misdiagnosis and frustration among patients.
"It's really challenging," Viswanathan said. "If you're not seeing a certain volume of patients with long-standing COVID, it can be difficult to recognize when a patient may have it and when they may not."
Mindy's Story
COVID-19 first struck Mindy Lym, a 37-year-old San Francisco native, like a mild flu with fever and congestion. But on the fifth day of his illness, he looked at a text from his girlfriend who was isolating in a separate room and couldn't make out the words. It sounded like gibberish.
"That really scared the hell out of me," Lym said. "I knew it had gotten into my brain."
He has spent every day since then chasing an elusive recovery. Like McCorkell, Lym developed postural orthostatic tachycardia syndrome and wears compression garments such as stockings and a corset to improve blood circulation. He also has mast cell activation syndrome, which causes an immune response similar to a severe allergic reaction, as well as chronic inflammation.
For three months, Lym, who previously worked as a music teacher and stage actor in San Francisco, could barely walk and required a full-time caregiver to dress and bathe. Even soft noises and dim lights caused her "excruciating pain." When construction outside his home led to weeks of hammering, Lym developed PTSD.
"We moved due to my long COVID," Lym explained. «Being in a city with city noise… it was completely unsustainable».
In September 2022, before moving out of state to rural Washington, Lym called the Post Acute Syndrome COVID-19 clinic at Stanford Health Care. The clinic scheduled an appointment for her in October 2023.
"Demand has been extremely high," said Dr. Linda Geng, co-director of Stanford's long-running COVID clinic. The clinic sees between 12 and 15 new patients each week and has an average wait time of eight months.
Yet even as patients like Mintz and Lym struggle to get into a specialty clinic, UCLA physician Viswanathan said she has heard from several colleagues at other facilities that they are considering closing their COVID long-term care clinics or reducing hours. . Health systems are strapped for cash and face severe labor shortages, said Dr. Anil Keswani, chief medical officer at Scripps Health in San Diego.
“We have increased supply costs. We have increased pharmacy costs. We have increased labor costs,” Keswani said. “How do health care systems invest in programs like extended COVID clinics, like hiring more doctors? Healthcare organizations have been hit in recent years, but I don't see any relief from the government."
Nearly a third of California's long-running COVID clinics told CalMatters they need more resources to expand capacity, raise awareness, or train primary care physicians to recognize the signs.
"Ultimately, the real way that we're going to be able to expand or even keep these clinics running...will probably be through support at the state or federal level," Viswanathan said.
Support should also come in the form of patient navigators and caseworkers for long-COVID patients, Viswanathan said.
Janine's story
A patient navigator could help someone like Janine Loftis, who has fought for nearly two and a half years to be seen by a COVID specialist.
Loftis turned 73 in January, but physically he feels much older. In November 2020, after being "at home for two weeks not knowing what to do," Loftis called an ambulance. It was the middle of the night, he had COVID, and his oxygen level dropped. Family and caregivers could not control her for fear of infection. When Loftis was admitted to the hospital, he had viral and bacterial pneumonia and blood clots were forming deep in his veins.
Loftis was already disabled from previous spinal injuries, but the lingering side effects of COVID-19 have brought her down.
"It's embarrassing how little I can do on my own," Loftis said. "My body gives me up. Things just get lost in my mind."
Chronic fatigue and brain fog prevent him from going to religious services in person, and he recently gave his nine-year-old dog, Lily Grace, to an adoption agency after caring for her became too difficult. When Loftis's home carer went away for four weeks, she couldn't find a replacement. Long-standing labor shortages sharply intensified during the pandemic, leading to “high demand and few choices.” With no one to help her, Loftis "struggled terribly" to manage daily tasks.
“I have a COVID test sitting because yesterday I felt really bad. I thought, 'Do I have it again?'” Loftis said.
Juggling medical appointments and navigating the byzantine health insurance system is an additional hurdle for Loftis.
"My head is spinning just trying to talk about it again," she said. "I don't know how ordinary people, especially disabled people with a lot of distractions like pain or brain fog like me, how... understand it."
Two months ago, Loftis finally convinced her primary care physician to refer her to UC Davis' long-term COVID clinic, but her paperwork is "lost in a pile of things that need clearance."
"It takes everything to keep up with anything," Loftis said. “When things are ignored or I don't know the process, I just have to wait for it to unfold. I am the intermediary. I can not do anything".
UC Davis Health did not make anyone from its longstanding COVID clinic available for an interview. When asked about the clinic's capacity, the media relations division said in an unattributed email that the Post-COVID-19 Clinic has the capacity to treat "an infinite number of patients."
I hope… with some caveats
There is a chance of recovery. Anecdotally, longtime COVID specialists interviewed by CalMatters said that even if patients don't fully recover, most see significant improvement over time.
"You look back a year or 18 months and most people have had improvement, if not complete resolution," said Dr. Caitlin McAuley, a primary care physician at the USC Keck COVID Recovery Clinic.
A large study from Israel found that among patients with mild COVID-19 infections, most symptoms resolved within a year.
Other studies, however, paint a less rosy picture, with few patients reporting a full recovery. A study in French patients found that 85 % still reported prolonged COVID symptoms one year after onset.
On the plus side, Mintz, who has had COVID for eight months, has slowly regained her energy over time. It can go five or six hours without crashing, compared to two hours in January.
And Lym, who has had COVID for nine months, has also seen remarkable improvement. In February, he enrolled in a long-running private COVID research and treatment clinic. Along with her doctor, Lym discovered that certain foods exacerbated her most severe symptoms. She now has an 18-page list of foods she can't eat, and takes a daily mix of antihistamines, blood thinners, and supplements. Although Lym is still disabled, her sensory issues have improved 95 percent and her energy has steadily improved.
“I feel like I got my personality back. My fatigue no longer limits the way I express myself… which is amazing," Lym said.
But Lym's clinic is not covered by insurance and costs $1,000 a month plus the cost of any tests the doctor orders.
"It's not accessible," Lym said. "I know that there are many people who are going through what I am going through but who do not have the resources."
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