FREE//GRATUITO
PUBLISHED BY ACCIÓN LATINA
November 3-16, 2022
Vol. 52 No. 22
MAYOR INVESTIGACIÓN, COVID ‘LONG-HAULERS’ PROTECCIÓN LABORAL Y ADVOCATE FOR MORE POLÍTICAS SANITARIAS, RESEARCH, LABOR PROTECTIONS, AND PIDEN PACIENTES CON COVID PERSISTENTE PEOPLE-CENTERED HEALTH POLICIES Mara Cavallaro El Tecolote Mara Cavallaro is El Tecolote’s Report for America Corps Member who reports on mental health and healthcare inequality in the Latinx community.
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n May of 2020, Dr. Michael Peluso saw his first patient with long COVID at San Francisco General, before long COVID had a name. She was young, he remembers, and came in for persistent falling and fainting spells that made it hard to work and take care of her kids. Her symptoms were “surprising,” Peluso said. “She was debilitated.” It turned out that in her case COVID had triggered dysautonomia, a nervous system syndrome that interferes with heart rate and blood pressure regulation. In addition to fainting, common symptoms include vertigo, chest pain, migraines, nausea, and fatigue. And though sometimes present at birth, dysautonomia is often post-viral, meaning it develops in response to serious diseases or infections. “At the time, I didn’t know what I was seeing,” Peluso told El Tecolote. “Now, I know that [she] had long COVID.” An estimated ten to 30 percent of people who have had COVID experience PASC, or post-acute consequences of the virus that continue following a negative test. Of this group, nearly 70 percent developed moderate to severe dysautonomia, making the condition one of the most common manifestations of long COVID. Many others experience COVID-like symptoms: shortness of breath, chest pain, fevers, recurring colds. What we still don’t know, though, is why. Why some infections develop into long COVID and not others, why long COVID symptoms are so varied — from “brain fog” to heart problems to erectile dysfunction —, why they are so persistent. Since the spring of 2020, patient-advocates have demanded investment in research to find answers to these — and many more — questions, and to improve both care and prevention. “Right now we have an estimated 19 million people in the U.S. with long COVID,” said Lisa McCorkell, Oakland-based co-founder of the Patient Led Research Collaborative (PLRC). “It’s critical for anything with that severity … to be studied. The number of people that are experiencing it now makes it that much more urgent.” In March of this year, thanks to patient advocacy for more research, UCSF launched a chapter of RECOVER (Researching COVID to Enhance Recovery), a three-to-four year national study on long COVID sponsored by the National Institute of Health. It encompasses lab tests
— of blood, saliva, and urine — that seek to answer the biological whys, as well as surveys and interviews that seek to better understand the populations most affected by long COVID and their needs. In San Francisco, for instance, data demonstrate that Latinx people are disproportionately represented in COVID cases and deaths. The CDC estimates that 17.6 percent of Latinx adults have experienced long COVID, more than “non-Hispanic” white adults (13.7 percent), Black adults (12.2 percent), and Asian adults (8.3 percent), and second only to “non-Hispanics” of other or multiple races (19.2 percent). More recently, the Abriendo Puertas National Family Study found that one in four Latinx families are currently suffering from long COVID symptoms. White people with long COVID, however, have been overrepresented in clinical treatment settings — what The Guardian calls an “equity gap.” Even in cities with predominantly Latinx populations, local clinics’ patient demographics are skewed — towards whiter, wealthier patients, who have the time and resources to seek help. Now, as we approach three years of COVID, research and treatment projects are recognizing that low-income communities and patients of color have been overlooked. “I want to make sure that the communities most heavily affected by COVID, — and in particular the Latino community in San Francisco — are represented in this study,” Dr. Carina Marquez, RECOVER’s community engagement co-lead, told El Tecolote. Patient-led Research By the time Peluso and other UCSF physicians had seen several patients with symptoms lasting weeks or months after initial infections, they began to study COVID “more formally,” in a research project called LIINC. Across the United States, though, patients with long COVID continued to be ignored, doubted, and dismissed by medical professionals. “I experienced a lot of gaslighting,” McCorkell said of her experience trying to get support from Sutter Urgent Care for her persisting symptoms. “There was a point where I had extreme palpitations and a lot of chest pain, and so I went to the ER and was told I was just having anxiety. In retrospect, I know that was an episode of POTS [a form of dysautonomia].” Lisa, and many others, turned to online forums — the term “long COVID” itself was coined by a patient on Twitter — to discuss their symptoms and be in community. In quarantine, it was these digital spaces that became information, research, and advocacy centers for ‘long-haulers.’ The Patient Led Research Collaborative See LONG COVID, page 8
Illustration: Jaycee Felkins
Mara Cavallaro El Tecolote Mara Cavallaro es miembro de Report for America y reporta para El Tecolote sobre la salud mental y la desigualdad en la atención médica de la comunidad Latinx.
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n mayo de 2020, el médico Michael Peluso vio a su primera paciente con COVID persistente en el Hospital General de San Francisco, antes de que esa enfermedad fuera nombrada así. Era joven, recuerda, y padecía caídas y desmayos persistentes que le dificultaban trabajar y cuidar de sus hijos. Sus síntomas eran “sorprendentes”, refirió Peluso, “estaba debilitada”. Resultó que en su caso el virus había desencadenado una disautonomía, un síndrome del sistema nervioso que interfiere la regulación del ritmo cardíaco y la presión arterial. Además de los desmayos, los síntomas más comunes son vértigo, dolor de pecho, migrañas, náuseas y fatiga. Y aunque a veces está presente al nacer, la disautonomía suele ser postviral, es decir, se desarrolla en reacción a enfermedades o infecciones graves. “En ese momento, no sabía lo que estaba viendo”, reconoció Peluso a El Tecolote, “ahora, sé que [ella] tenía COVID persistente”. Se calcula que entre el diez y el treinta por ciento de las personas que han padecido COVID expe-
rimentan PASC, o consecuencias post agudas del virus persistentes después de un resultado negativo en una prueba de detección. De este grupo, casi el setenta por ciento desarrolló una disautonomía de moderada a grave, lo que hace que esta afección sea una de las manifestaciones más comunes del COVID prolongado. Mucha gente también experimenta síntomas similares a los del COVID: dificultad respiratoria, dolor torácico, fiebre, resfriados frecuentes. Sin embargo, lo que todavía no sabemos es por qué. Por qué algunas infecciones se convierten en COVID persistente y otras no, por qué sus síntomas son tan variados — desde ‘niebla mental’ hasta problemas cardíacos o disfunción eréctil—, por qué son tan persistentes. Desde la primavera de 2020, los defensores de los pacientes han exigido que se invierta en investigación para encontrar respuestas a estas y otras muchas preguntas, y para mejorar tanto la atención como la prevención. “En este momento, se estima que tenemos 19 millones de personas en los EEUU con COVID persistente”, dijo Lisa McCorkell, co fundadora de la Patient Led Research Collaborative (PLRC) con sede en Oakland. “Es fundamental que cualquier cosa con esa gravedad... se estudie. El número de personas que lo están experimentando ahora lo hace mucho más urgente”. En marzo de este año, gracias a la presión de los pacientes para
realizar una mayor investigación, la UCSF puso en marcha un capítulo de RECOVER (Researching COVID to Enhance Recovery), un estudio nacional de tres a cuatro años sobre el COVID persistente patrocinado por el Instituto Nacional de Salud. Abarca pruebas de laboratorio —de sangre, saliva y orina— que tratan de responder a los porqués biológicos, así como encuestas y entrevistas que buscan comprender mejor las poblaciones más afectadas y sus necesidades. En San Francisco, por ejemplo, los datos demuestran que la población latina está desproporcionadamente representada en los casos y muertes por COVID. Los CDC estiman que el 17.6% de los adultos latinos han sufrido COVID persistente, más que los adultos blancos ‘no hispanos’ (13.7%); los adultos negros (12.2%) y los adultos asiáticos (8.3%), y sólo por detrás de los ‘no hispanos’ de otras o múltiples razas (19.2%). Más recientemente, el Estudio Nacional de Familias Abriendo Puertas descubrió que una de cada cuatro familias latinas sufre actualmente síntomas prolongados del virus. Sin embargo, las personas blancas han estado sobrerrepresentadas en los entornos de tratamiento clínico —lo que The Guardian llama una “brecha de equidad”. Incluso en ciudades con poblaciones predominantemente latinas, la demografía de los pacientes de las clínicas locales está sesgada: hacia Vea COVID PERSISTENTE, página 10