Secret, Disabling ‘Long COVID’ Could Affect 2 Million People in California

Angela Meriquez Vazquez has been infected with COVID-19 for two years, yet some of her most devastating symptoms persist. Migraines, lethargy, brain fog, palpitations, sleeplessness, and, on rare occasions, a fever are just some of the symptoms that impair her daily life.

Lisette Duarte continues to use an inhaler eight months after contracting COVID-19, and damage to her voice box periodically impairs her ability to talk. Because she cannot return to work, she is reliant on Medi-Cal for health care.

COVID is a perplexing, debilitating, and difficult-to-diagnose collection of post-infection complications that has afflicted maybe millions of California residents.

And health experts believe that the toll will be particularly severe for Latinos, African Americans, and low-income citizens, who already bear a disproportionate share of the burden of COVID-19 and lack access to decent health care.

At least twenty specific post-COVID programs have been established at California medical facilities to assist in treating these long-haul patients.

However, they are already overworked, and specialists believe that if COVID is left untreated or misdiagnosed for an extended period, it will primarily go untreated or be misdiagnosed among persons with limited means.

“We know that because the majority of exposure occurs in low-income populations, they will bear the brunt of long-term COVID,” said Dr. Neeta Thakur, a UC San Francisco pulmonary and critical care physician.

Long-term COVID patients may require a multidisciplinary team of experts due to established cardiac, pulmonary, and neurological complications. As a result, those without health insurance or on Medi-Cal may struggle to obtain necessary care and pay for costly testing.

Several large sections of California have a scarcity of physicians skilled in identifying and treating chronic COVID disorders.

According to a crowdsourced list compiled by a patient advocacy group, virtually all of California’s 20 post-COVID clinics and programs are located in the Bay Area, Los Angeles, Orange County, and San Diego.

Only one of those listed is located in the Central Valley. None are located in the San Joaquin Valley, an eight-county region devastated by earlier COVID-19 infection waves.

The prevalent perception (of patients) is that various community providers have seen them. They are frustrated,” Dr. Jeffrey Hsu, a cardiologist in a team of physicians treating patients at UCLA Health’s long-running COVID program, explained.

“They are told it is nervousness or that they should be patient and that their symptoms will resolve independently.”

According to studies, around one in four COVID-19 individuals develop symptoms that persist for months, referred to as “long haulers.” It might suggest that up to 2 million persons in California’s 8.5 million COVID-19 cases have long-standing COVID, including more than 100,000 African Americans and one million Latinos.

However, it is difficult to determine how many people genuinely suffer from extended COVID since the term is still being defined: The Centers for Disease Control and Prevention in the United States define long-term symptoms as those that persist for more than four weeks following an infection; the World Health Organization defines it as 12 weeks.

The California Department of Public Health is cooperating with UCSF and UCLA on a national project that will use patient questionnaires to follow the aftermath of COVID infections.

Without offering details, the department also stated that it is collaborating with the University of California system to enhance access to post-COVID information and care.

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Long-Term COVID Care Demand Exceeds Capacity

The UCLA COVID team is comprised of four primary care physicians who examine patients and then refer them to the appropriate specialist – cardiologists, neurologists, pulmonologists, and psychiatrists, among others.

Hsu stated that the training is in great demand. UCLA’s program has received over 300 referrals but can only handle 200 individuals.

Around half of the patients in UCLA’s program are already UCLA Health members, while other Los Angeles clinicians recommend the remaining half, he added.

He is concerned about patients who lack insurance due to the high cost of the necessary testing and those experiencing symptoms who reside in places without access to clinicians qualified to diagnose extended COVID.

“All we have to do is pretend that the patients we see are those who have the means to reach us,” Hsu explained.

Patients with prolonged COVID may visit their primary care physicians, who may confer with experts. However, another issue is the state’s historically unequal distribution of primary and specialized care providers.

According to a 2018 research from the California Health Care Foundation, active physicians per 100,000 persons in the Inland Empire and San Joaquin Valley is around half that in the Bay Area.

Duarte, who resides in East Los Angeles, struggled for months to obtain the proper care for her continuing medical concerns.

“No one was paying attention to me,” she explained. It required switching physicians and raising complaints, but she received a referral to a lengthy COVID program this month.

“I do believe I received subpar treatment,” Duarte stated. She wonders if this is because she is insured by Medi-Cal, California’s low-income citizens’ insurance.

According to research, people of color and low-income people’s health problems are often dismissed, resulting in misdiagnosis and continued bad health.

For example, African Americans receive less care than whites in 43% of the federal government’s quality-of-care categories, such as effective treatment. Latinos receive less care than whites in 36% of the metrics.

This disparity may be especially concerning for individuals with prolonged COVID, as it is difficult to identify and treat effectively. As with other chronic illnesses such as diabetes and hypertension, doctors predict uneven management of symptoms associated with prolonged COVID use.

“Just as the state attempts to establish an equitable framework for vaccine distribution, having an equity framework for limited treatment resources may be beneficial,” said Kristen Azar, a registered nurse and scientific medical director for the Sutter Health Institute Advancing Health Equity.

Vazquez works for the Children’s Partnership, a child health advocacy organization, and is familiar with navigating health systems and advocating for oneself.

However, even in her home city of Los Angeles and adequate health insurance, she struggled to find the right team of specialists acquainted with post-COVID diseases.

“I’ve switched providers multiple times,” said Vazquez, 34, a runner before contracting COVID. “I am undergoing treatment for several ailments that are expected to persist for the foreseeable future, if not indefinitely.”

She is being treated for various ailments, including postural orthostatic tachycardia syndrome, a circulation disease that causes her to feel lightheaded. She seldom leaves her house since even little social interaction exhausts her.

“What would have been a typical day — working and then going to a brewery for happy hour — if I did that today, I would simply collapse in bed with a massive temperature and the shaking,” she explained.

Earlier this year, Vazquez was elected president of Body Politic, an advocacy organization that acts as a resource and support group for long-term COVID sufferers.

She promotes the training and teaching of Medi-Cal clinicians on extended COVID to ensure that low-income patients receive optimal treatment.

“The state’s responsibility is to ensure that all Medi-Cal providers and beneficiaries know extended COVID,” Vazquez added. “When someone tests positive, clinicians should inquire about long-term symptoms at the next follow-up consultation.”

Medi-Cal recipients receive fewer vaccinations than the general population in California, making them more susceptible to serious illness and long-term effects.

According to the state’s February immunization update, around 56 percent of Medi-Cal participants have gotten at least one dose of the vaccine, compared to 83 percent of the general population.

In California, blacks and Latinos likewise have a lower immunization rate than whites.

According to short research conducted in Israel, those vaccinated are less likely to report some symptoms associated with prolonged COVID, such as muscle soreness and weariness. However, vaccinated individuals and those with minor illnesses can become COVID long haulers.

Many Cannot Return to Work Due to Debilitating Symptoms.

Vazquez can work from home, which is not an option for everyone with a lengthy COVID. “This minimizes my exposure,” Vazquez explained. “However, vital employees, there is no way I could remain on my feet daily checking groceries in my current condition.”

Around 2.37 million individuals may lose their jobs as a result of prolonged COVID, according to Dr. Gregg Vanichkachorn, medical director of the Mayo Clinic COVID Activity Rehabilitation Program. He testified earlier this month at a state legislative hearing.

While the state does not have an official estimate, “it is possible that a considerable number of Californians will be affected,” Dr. Erica Pan, the state epidemiologist, stated at the hearing.

“The COVID-19 pandemic has the potential to be a massively debilitating event and a source of acute disease and mortality,” she explained.

Duarte is one of the patients who has stated that she would be unable to return to work. She works as a consultant, assisting education and autism NGOs with programs development.

She stated that her voice box troubles, which she believes are caused by frequent coughing, her brain fog, and occasional dependency on oxygen tanks, prevent her from working.

“I wish we had access to case managers who would accompany us to appointments and assist us in navigating this,” she added. She used to have an amazing recall before her sickness, but now she needs to prepare lists for almost everything.

While experts work to understand the condition better, many patients become desperate for treatment.

Duarte said she receives reports from friends and family members who are also experiencing symptoms such as shortness of breath and coughing months after contracting COVID-19.

“There are a lot of us, and I believe that most people are coping with it on their own,” she explained.