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— Research

Building Trust with Communities of Color: Lessons from the COVID-19 Pandemic

People of color have died disproportionally due to COVID-19, highlighting the deep socioeconomic and health disparities that persist in our country.

The pandemic produced scientific innovation, from treatments to vaccines, at an unprecedented pace. Yet, only a small proportion of people who participated in COVID-19 clinical trials and vaccine development were people of color. To overcome this pandemic, we need broad acceptance and use of COVID-19 vaccines, especially among those most affected.

Unfortunately, vaccine hesitancy historically runs high among communities of color. At the core of this lack of participation in research by communities of color and vaccine hesitancy is enduring mistrust in the systems of medical research and care.

Medical mistrust results from an evolutionary form of resilience and a survival mechanism in response to chronic oppression. It provides a sense of control for people who feel powerless in the face of discrimination or who expect to be victims of future mistreatment. Medical mistrust becomes problematic when it prevents people from engaging in healthy behaviors or accessing appropriate health care.

The COVID-19 pandemic provided painful lessons on how we can reduce mistrust in the communities we are supposed to serve.

First, we must acknowledge our mistakes from the past. We must speak frankly and honestly about the legacy of exploiting minorities through research. The notorious U.S. Public Health Service study at Tuskegee followed black Americans infected with syphilis from 1932 to 1972, never treating them despite the availability of penicillin. In a less well-known incident, researchers misused blood samples from the Havasupai tribe for purposes not authorized by participants. American researchers in Guatemala infected vulnerable people with sexually transmitted diseases to explore treatments.

These studies underscore the need to protect our vulnerable and minority communities through the establishment of robust and representative human subjects’ protection programs.

But we cannot pretend that abuses of the past are entirely in the past.

Structural racism and inequities in health care persist, as COVID-19 tragically reminded us. We must take this moment to champion UC San Diego Health as a leading center of excellence for diversity, equity and inclusion for underserved, vulnerable and historically marginalized communities.

Second, COVID-19 reminded us that treating communities of color as “research subjects” is not an adequate approach for regaining trust and engagement in research. When they are involved in framing the questions that affect them, when there is a community-based approach, we have observed that these communities are more likely to be involved and engaged.

Indeed, when people of color were involved as full partners, they helped establish testing sites in churches and vaccination sites in local auditoriums. They encouraged their community members to participate. Without their critical involvement and support, our mobile clinics in underserved communities would have remained without visitors.

We need to empower our communities of color. They need to know that they can be involved at many levels. They can participate as community members of an institutional review board, which helps ensure the rights and welfare of human research subjects. They can work with scientists in community advisory boards or with university groups for community-based research efforts that address particular concerns in their own neighborhoods.

This cannot be a neo-colonialist, paternalistic process. It must involve full partnerships that enhance the dignity and self-efficacy of the community and concomitantly reduce health disparities.

Third, COVID-19 helped facilitate the broader implementation of electronic consent documents. But this innovation became problematic for communities of color with limited computer access, challenges in health literacy and chronic suspicion of unknown processes promoted by unfamiliar entities.

Our informed consent process must strive to become more transparent and to assure full understanding of every participant. We need to make it simpler, more direct and more relevant to participants’ lives.
Finally, our academic systems encourage young investigators to prove themselves by publishing, securing extramural funding and achieving promotion and tenure through this path. We must aggressively support them in these efforts. As essential as it is to grapple with research methods and applications, it is equally important to teach awareness of cultural differences, perspectives and conflicts of interest.

One can see how real-world crises can focus and elevate speed and efficiency. Building relationships with our communities of color takes time. It requires conversation, most especially listening and commitment. We need to enhance the training of our younger investigators to minimize implicit bias and promote empathic engagement.

We must be worthy of trust in order to gain it.

— Research

Fomentando la confianza en las comunidades de color

Lecciones que nos deja la pandemia de COVID-19

Las personas de color han muerto desproporcionadamente a causa del COVID-19, lo que resalta las profundas desigualdades socioeconómicas y de salud que persisten en nuestro país.

La pandemia produjo innovación científica, desde tratamientos hasta vacunas, a un ritmo sin predecentes. Sin embargo, solo una pequeña fracción de personas que participaron en los estudios clínicos de COVID-19 y en el desarrollo de vacunas fueron personas de color. Para superar esta pandemia, necesitamos una amplia aceptación y uso de las vacunas contra el COVID-19, especialmente entre aquellos más afectados.

Desafortunadamente, se conoce que la vacilación en vacunarse es alta entre las comunidades de color. En el centro de esta falta de participación en la investigación por parte de las comunidades de color y sus titubeos para recibir las vacunas está la desconfianza permanente en los sistemas de investigación y atención médica.

La desconfianza médica es el resultado de una forma evolutiva de resistencia que se convirtió en un mecanismo de supervivencia en respuesta a la opresión crónica. Esto da una sensación de control a las personas que se sienten impotentes frente a la discriminación o que esperan ser víctimas de malos tratos en el futuro. Sin embargo, la desconfianza médica se vuelve problemática cuando impide que las personas adopten comportamientos saludables o accedan a una atención médica adecuada.

“La pandemia de COVID-19 nos dejó lecciones muy dolorosas sobre cómo podemos reducir la desconfianza en las comunidades que más deberíamos servir.”

Primero, debemos reconocer nuestros errores del pasado. Es fundamental hablar con franqueza y honestidad sobre el legado de la explotación de las minorías por medio de la investigación. El notorio estudio del Servicio de Salud Pública de EE. UU. en Tuskegee siguió a personas afroamericanas infectadas con sífilis desde 1932 hasta 1972, y nunca se les administró tratamiento a pesar de la disponibilidad de penicilina. Otros ejemplos infames menos conocidos incluyen el estudio en La tribu Havasupai que había almacenado muestras de sangre que se utilizaron indebidamente para fines no autorizados por los participantes. Asi como cuando, investigadores estadounidenses en Guatemala infectaron a personas vulnerables con enfermedades de transmisión sexual para explorar tratamientos.

Estos estudios denotan la necesidad de proteger a nuestras comunidades minoritarias y vulnerables mediante el establecimiento de programas de protección de sujetos humanos sólidos y representativos.

Pero no podemos pretender que los abusos del pasado hayan desaparecido por completo.

El racismo estructural y las inigualdades en la atención médica persisten, como nos recordó trágicamente el COVID-19. Debemos aprovechar este momento para convertir a UC San Diego Health en un centro líder de excelencia para la diversidad, la equidad y la inclusión para las comunidades minoritarias, desatendidas y vulnerables.

En segundo lugar, el COVID-19 nos recordó que tratar a las comunidades de color como “sujetos de investigación” no es del todo adecuado para romper la desconfianza y la falta de compromiso con la investigación. Cuando están involucrados en diseñar las preguntas que los afectan, cuando hay un enfoque basado en la comunidad, hemos observado que estas comunidades tienen más probabilidades de involucrarse y comprometerse.

De hecho, cuando las personas de color participaron como socios de pleno derecho, ayudaron a establecer sitios de prueba en iglesias, sitios de vacunación en auditorios locales y alentaron a los miembros de su comunidad a que participen. Sin su colaboración y apoyo críticos, nuestras clínicas móviles en comunidades necesitadas se habrían quedado sin visitantes.

Necesitamos empoderar a nuestras comunidades de color. Ellos necesitan saber que pueden participar en muchos niveles. Por ejemplo, pueden participar como miembros representates de la comunidad de un Comité Ético de Investgiación Institucional, que tiene como objetivo ayudar a garantizar los derechos y el bienestar de las personas que participan en diversos estudios de investigación. También, podrían trabajar con investigadores en juntas asesoras comunitarias o con grupos universitarios para unir esfuerzos de investigación basado en beneficios para la comunidad que aborden preocupaciones álgidas en sus propios vecindarios.

Este no puede ser un proceso neocolonialista ni tampoco paternalista. Deben ser alianzas plenas que mejoren la dignidad y la autoeficacia de la comunidad y, simultáneamente, reduzcan las desigualdades en la salud.

En tercer lugar, el COVID-19 ayudó a facilitar la implementación a gran escala de documentos de consentimiento electrónicos. Pero esta innovación se volvió problemática para las comunidades de color que tienen acceso limitado a computadoras, menor alfabetización en salud y desconfianza histórica en los procesos nuevos promovidos por entidades desconocidas.

Nuestro proceso de consentimiento informado debe esforzarse por ser más transparente y asegurar la comprensión plena de cada participante. Necesitamos hacerlo más simple, más directo y más relevante para la vida de los participantes.

Finalmente, nuestras universidades alientan a los investigadores jóvenes a demostrar su valía publicando y asegurando fondos externos que les permite lograr promoción y asegurar su posición académica. Debemos apoyarlos enfática e incondicionalmente en estos esfuerzos. Sin embargo, tan esencial como lidiar con los métodos de investigación a aplicar, es igualmente importante enseñarles a tomar conciencia de las diferencias culturales, las perspectivas y los propios conflictos de intereses.

Uno puede ver cómo las crisis vividas pueden enfocarse y aumentar la velocidad y la eficiencia. Empero, establecer relaciones con nuestras comunidades de color lleva tiempo. Requiere comunicación, especialmente capacidad de escucha y compromiso. Necesitamos mejorar la formación de nuestros investigadores más jóvenes para minimizar sesgo implícitos y promover relaciones con autenticidad y empatía.

“Debemos ser dignos de confianza para poder obtenerla.”

— Education

The Year We Were Schooled by a Pandemic

Pandemics are a recurring tragedy in human history, but they don’t have to be

From the Black Death and smallpox through malaria, measles, mumps, SARS and Ebola, pandemics have always plagued humanity. Each provided painful lessons, and the degree of pain is often a reflection of human error—the same errors of the past continued into the present now and the future tomorrow.
The COVID-19 pandemic is the latest, but surely not the last. Still, I was surprised in early March 2020 when Nancy Binkin, MD, my infectious disease colleague in the Division of Epidemiology, told me, “Life as we know it is over.”

I studied the first recognized U.S. outbreak of COVID-19 in a Kirkland, WA nursing home. It was reported on February 28th that a virus had infected 129 people and killed 23. This happened near my longtime former home in the Seattle area and in one of the most capable public health systems in the United States.

I listened to the public federal bickering on March 7th about whether Americans on a cruise ship docked in the Bay Area should be allowed to disembark to care for the sick and protect those still healthy, and the unconscionable consideration that everyone should stay on board so that U.S. numbers of COVID cases would not double.

On March 9, 2020 Wilma Wooten, MD, San Diego County’s public health officer, announced that the first local case of COVID-19 had been identified. Eleven days later, UC San Diego Chancellor Pradeep Khosla followed California Governor Gavin Newsom’s order and sent us home to quarantine in a major effort to flatten the curve of community spread.

In a few weeks, though, it became clear that community spread of COVID-19 had been going on silently in California and elsewhere for months, that the virus was spreading to every country in the world, that millions of deaths would occur, that vaccine development was likely the only way out, but widespread vaccination efforts were one to two years away — on an optimistic timeline.

In real-time, we saw that what was happening in Italy would happen in New York City and then in many other communities. We saw that we were woefully unprepared in terms of having adequate personal protective equipment for hospital workers, ventilators for the most seriously ill, accurate testing methods on a scale that would allow us to identify and isolate the infected, and the ability to coordinate a national or international response.

Our education by a modern pandemic had begun in earnest. I was beginning to understand the implications of Dr. Binkin’s prediction: There would be no aspect of population health, or arguably our daily lives, left untouched by the threat of COVID-19.





Before the emergence of COVID-19, on the 100th anniversary of the 1918 Influenza Pandemic, a special section in the November issue of the American Journal of Public Health was devoted to prescient reflections on the lessons learned and not learned during the past century.

These papers make clear that none of us should be surprised by the repeated history we observed in 2020. The accompanying editorial by Wendy E. Parmet and Mark A. Rothstein identified three leading attitudinal threats: hubris, isolationism and distrust.

These attitudes breed misinformation. In 1918, as in 2020, both pandemic viruses prompted all manner of misinformation, sometimes misguided, sometimes malign.

“The term “Spanish Flu” arose not because Spain was where the H1N1 flu virus originated, but because the Spanish press were among the only media permitted by their country to write freely about what was happening.”

Woodrow Wilson severely curtailed accurate reporting to Americans during the pandemic as a wartime measure when he signed the Sedition Act in 1918. It was repealed by Congress in December 1920.

In 1918, controversy existed about the usefulness and legality of face masks, which resulted in various pressure tactics by both sides of the debate. This led to San Francisco establishing a mandatory mask ordinance in October 1918 and an organized campaign against the law in 1919 by the Anti-Mask League of San Francisco.
A “public service announcement” published in the San Francisco Chronicle in October 1918 declared that “the man or woman or child who will not wear a mask now is a dangerous slacker.” I cannot help but wonder why solid research on the effectiveness of masking for the general public as a defense against viruses spread by respiratory droplets from person to person was so lacking 100 years later when Anthony Fauci, MD, director of the National Institute of Allergy and Infectious Diseases, first commented on whether we should wear them. Eventually, mask mandates during COVID-19 were followed by news reports of angry protestors storming grocery stores to demand an end to enforced masking.

A highly transmissible and deadly global pandemic will unmask every weakness in our larger society, but in public health, our research unveils these weaknesses routinely. Our raised voices calling out the harms of poverty, gun violence, lack of health care and all manner of oppression are largely ignored.

The same inequalities that influence nearly every aspect of our lives, from education and employment to housing to health care, to the safety of front line workers and care of our most vulnerable older Americans have been highly visible during the COVID-19 pandemic. Already burdened by myriad social and economic disadvantages, people of color, women and essential workers, from store clerks to bus drivers, struggled to survive — and many did not.

Black, Latino and Native American communities were disproportionately affected by COVID-19 and died at rates far above those of white people.

Clearly, in the column of unlearned lessons, we must confront the fact that we tolerate too many preventable deaths among our fellow Americans when we could do so much better. Pandemics hold a mirror up to our complacency.

We all have our personal stories about the pandemic, and these range widely. My adult children remained employed and took care of each other while we chose not to risk visiting until vaccinated. We watched our daughter graduate from her master’s program via Zoom. I worried about my sister in New York City taking the subway. We were informed that my mother, who has Alzheimer’s disease and resides in a memory care facility in White Plains, NY, had COVID-19. We placed her in hospice care.

At the time, there were no readily available COVID-19 tests, and hospitals were overflowing. Health care staff at the memory care facility were sleeping in the building to avoid spreading the virus. I was terrified when a faculty colleague was hospitalized for many weeks with severe COVID-19, complicated by MRSA pneumonia.

Miraculously, and thanks to the compassionate work of our health care providers, both my mother and colleague survived. As an epidemiologist, I am acutely aware and greatly mourn that hundreds of thousands of Americans died, that we will never know the true number, and that the deaths will continue, even as we see transmission and mortality statistics decline, across the state and country with rising vaccination numbers.










I also know that we in public health will spend the next several decades trying to understand the full impact of the events of 2020 on those of us who survived COVID-19 across the holistic spectrum of physical, cognitive, emotional and mental health.

— Education

Reflections on Philanthropy in a Time of Crisis

Together, we have navigated the immense challenges of the COVID-19 pandemic. I have had the privilege to be a part of some much-needed moments of hope in my role as associate vice chancellor for Health Sciences Advancement. Even in the face of uncertainty and unrest, there has been an outpouring of philanthropic support.

What stands out to me more than any dollar amount was the commitment of our community to our tripartite mission — comprising research, education and care — and the community’s dedication to ensuring UC San Diego was equipped to rise to the challenge of COVID-19 in addition to maintaining its incredible portfolio of projects spanning every facet of the health sciences.

Research has been a central focus of much of our work over the past year. With the onset of COVID-19, we knew that there were few places equipped to contribute to battling this new illness quite like UC San Diego. Thanks to the gifts of philanthropists such as the Tu Foundation — which gave $1 million in support of Dr. Davey Smith’s efforts to develop new diagnostics, therapies and ways to track the virus — we were able to immediately begin understanding and pushing back against COVID-19.

An anonymous donor made a significant gift in support of Dr. Lars Bode’s work, which was central to providing global guidance on COVID and breast milk, helping new families navigate caring for a newborn amidst a pandemic.

Philanthropy also allowed us to be a leader in the development and testing of COVID-19 vaccines, which we knew would be the key to beating this disease. Many others invested in our COVID-19 efforts, and not only to research.

As a public university, and one of the top in the nation for health sciences, education lies at the heart of our mission. With the emergence of COVID-19, we pivoted to online learning, but early on we knew that eventually, we would need to bring our students and faculty back to campus to continue their learning and research.

Return to Learn was a comprehensive program that allowed us to reopen campus safely.
Philanthropy was central to that. Even prior to the pandemic, the philanthropy of Dr. Herbert Wertheim, Vanessa Wertheim and the Wertheim family established The Herbert Wertheim School of Public Health and Human Longevity Science which helped lead the way for Return to Learn.

Through a three-part strategy encompassing risk mitigation, viral detection and clinical intervention, we made sure that as we welcomed people back on campus, we limited their risk of exposure to the virus, kept an eye out for anywhere the virus might be present and supported students with COVID-19 so that their needs were met until they recovered.

UC San Diego Foundation Trustee Dene Oliver and his wife Elizabeth made the first major gift to our COVID-19 Emergency Response Fund, which expanded testing and diagnostics, advanced clinical trials and supported members of the UC San Diego community — including students — who faced various challenges due to COVID-19.

Gary and Jean Shekhter supported the San Diego Epidemiology and Research for COVID-19 Health (SEARCH) alliance, a collaborative study co-led by UC San Diego, Scripps Research and Rady Children’s Hospital-San Diego aimed at helping local businesses and employees return to work safely. Working together was central to continuing operations on campus and beyond.

“As an academic medical center, we are committed to providing the very best health care to our community.”

Philanthropy played a critical role in our clinical response. From the very earliest days of the pandemic, we knew that in order to rise to the challenge of COVID-19, we would need to increase our capacity to care for people with the disease.

To that end, philanthropists such as Joe Tsai and Clara Wu, as well as the Conrad Prebys Foundation, made gifts that supported acquisition of resources for our care staff so that they were protected as they worked on the front lines.

The generosity of our community also allowed us to open La Jolla Family House, normally reserved for patients’ families, as an on-campus housing area for medical staff so that they could care for patients without endangering loved ones at home.

And when the day came when vaccines were finally available, philanthropy allowed us to distribute them quickly and efficiently. A partnership between us, the San Diego Padres, the County of San Diego and the City of San Diego allowed UC San Diego Health to establish a vaccine superstation in the parking lot of Petco Park. At its peak, the site was administering more than 5,000 doses per day — roughly 225,000 in total.

However, we also recognize that COVID-19 has had an outsized impact on communities of color and underserved neighborhoods. The Hood Family Foundation stepped in to support mobile vaccine clinics, pop-up sites in the neighborhoods where disparity was most prevalent, so that the people there had access to a lifesaving intervention.
But our donors remained cognizant of many other illnesses that weren’t taking a break because COVID-19 appeared.

Philanthropists
made truly transformational gifts such as:

  • Hanna and Mark Gleiberman who helped establish Gleiberman Head and Neck Cancer Center, part of Moores Cancer Center, to redefine the way we understand and treat head and neck cancers.

  • Steven Strauss and Lise Wilson made a gift to the Cardiovascular Institute establishing the Strauss Wilson Center for Cardiomyopathy, allowing us to redefine care for heart disease.

  • Several families, including Iris and Matthew Strauss, Sally and John Hood, Karen and Don Cohn and Humberto and Czarina Lopez, all supported the creation of new endowed chairs across several health sciences areas.

  • Kristin Farmer, founder and CEO of ACES, made a gift to establish the Autism Comprehensive Educational Services (ACES) Innovation Project, advancing autism diagnosis research.

These and more, far more than a single article could do justice to, ensured that we continued battling old diseases even in the face of new ones. Philanthropy has been a vital part of every facet of UC San Diego Health and UC San Diego Health Sciences. The proof is in the thousands of gifts made — and the countless lives those gifts have impacted — in our region and around the world.

We are excited for what’s to come, but we cannot sustain and grow the level of achievement our physician-scientists, clinicians and students attain without the continued partnership of our community. You have brought us this far; we are eager to move forward with you at our side. Thank you.

— Clinical

Fetaulaiga Ala: At a Crossroads

I was in our Hospital Command Center in early February 2020 when we got that first call that U.S. Marshals would be transporting people who were sick and might be infected with a novel coronavirus — evacuees from Wuhan, China being held in federal quarantine at the nearby Marine Corps air base — to our hospital in Hillcrest. Our Incident Commander turned me and said, “Liz, what’s our plan?”

My first thought was “Holy s***, this is real. This is really happening.” Until then, it was all talk, just something we heard about in the news. We’d been through this before. With Ebola, we had prepared, we created a dedicated unit, but the virus never came. It occurred to me in that moment that this time would be different.

“I didn’t know what my plan was, but we obviously needed one — quick.”

It was one patient from Wuhan that day. Then another. Then another. The first thing we needed to do was figure out how to clear and secure the path of patient transport from ambulance to the rooms that had been readied for them. For the first few weeks, we worked closely with the Marshals. Everything was tightly controlled. Then one day the Marshals left, and it was up to us to determine who could go where and when.

Then it all snowballed from there.

After the Wuhan evacuees were released, we were at, well, “fetaulaiga ala.” (That’s “crossroads” in Samoan, which my parents spoke at home while I was growing up in Hawaii and California, and the language in which words still first come to me sometimes.) That’s when our leaders turned to me and said, “Liz, we need to secure every entrance. No one in except staff and patients. No visitors.”

We needed a new plan.

Seemingly overnight we set up a system to screen each person entering our hospitals, and only those with an employee badge or appointment could enter. Those early days were the hardest — processes and requirements were changing every day with the fluid situation. Sometimes mistakes were made simply because a person could show up to work following yesterday’s new protocols, not knowing they had already changed again.

It quickly became clear that our agents couldn’t possibly staff every entrance station, so we worked closely with the health system’s labor pool — a system for re-deploying staff from other units to an area of greatest need. Suddenly, agents weren’t just responsible for themselves, but became team leaders and subject matter experts in a way they never were before.



“At the same time, many of us were worried about our own families. We may have been a little resentful at first of all the people who could do their work from home when we couldn’t.”

I had to show up to work every day, as did my husband, a San Diego Police Department detective. And of course we worried that we could be bringing this mysterious virus home to our family. I’m grateful those fears never materialized and we fortunately have not been affected personally by COVID-19. As we learned more about the virus, and with the tremendous support of UC San Diego Health’s experts and leaders, we were able to take all the right precautions to work comfortably and safely on the front lines.

I cannot tell you how proud I am of my amazingly adaptive team. Whenever the need seemed impossible, we just dug in our heels and said “How can we help?” even if that meant working double-shifts (16-hour days) for seven days straight when we had to. Even when the worst happened — we lost a member of our team to COVID-19 — we came together, and we stepped up our efforts to get everyone vaccinated.

In January 2020, the Security team was again called upon to help make the impossible possible: Work with the County, the City, the San Diego Padres and San Diego Police Department to open the state’s first drive-through Vaccination Super Station at Petco Park. Oh, and do it all in just five days from idea to open gates. Everyone jumped in. It was hard at first, making adjustments every day to traffic flow and maintaining a safe environment for our hundreds of staff and volunteers, as well as the thousands driving in each day to be vaccinated, all in a parking lot downtown. Several days of wild winter storms didn’t make it any easier.

At times the Petco site felt like an episode of M*A*S*H — it was like a medical drama and I found myself in the middle of patient care in a way that I normally don’t. Each day a “doc of the day” was in charge of overseeing medical care, should patients need extra observation for rare allergic reactions after vaccination. I’ll never forget this one day when I was talking to the doc-of-the-day at our onsite command center when a call came through by walkie-talkie for a medic. I basically threw the doctor into a golf cart and drove him to the medical tent. He jumped out and started calling out commands before I’d even rolled to a stop. I’d never seen anything like it before.

I’ll also never forget the gratitude of the people coming in to be vaccinated — even if they had waited for hours, they were thanking us. That was worth all the hours of walking, talking, planning. After the Petco superstation, launching and managing additional vaccination locations was easy by comparison!

Before COVID-19, one of the main things my Security team was focused on was managing workplace violence. Most people would probably be surprised to hear it, but violence is a major issue in health care environments everywhere. So for many years we’ve been developing threat assessments and implementing data-driven programs for conflict management and weapons screening.

A silver lining of the pandemic has been that now, with staff at each hospital entrance to screen for COVID-19 symptoms and compliance with masking and visitor requirements, hospitals everywhere are more secure than they ever have been before. It’s long kept me awake at night that, just by its nature, the hospital is completely open to the public. There wasn’t a way to know who was in the hospital at any given time — who they are, why they are there, where they are going. But now calls to Security to manage unauthorized people, custody and domestic violence issues, vandalism and theft have gone down to practically zero. I can tell you how many people are in the hospital at any given time, and that’s huge from a safety perspective, including in the case of fire. I hope we can keep it that way going forward.

Through all of this, we realized that we are more capable than we ever thought possible — we really can implement totally new systems very quickly when we need to. If you had told us before we’d have to do the things we did, we’d laugh and say we couldn’t do it. But we did it, and we improved every day along the way. I’m grateful to the team for not becoming overwhelmed, but instead realizing that UC San Diego Health, where we are blessed with incredible support and resources, is the best place to be.

— Clinical

In Short, Long COVID is Complicated

But with each patient, doctors learn more about ways to make the disease go away forever

In March of 2020, just a couple of weeks into the pandemic, the Division of Infectious Diseases at UC San Diego Health launched a COVID-19 Telemedicine Clinic. The goal was to provide patients recovering at home with direct access to an infectious disease specialist and a nursing team that could communicate with them daily or as needed about symptoms and concerns.

It was a mutually beneficial relationship. Patients were able to speak directly with a doctor who could give them advice. Physicians were able to see and study the clinical course of COVID-19 firsthand.

Quickly, we learned that the clinical course of COVID-19 varies greatly. Duration and severity of symptoms were often unpredictable. Some patients had very mild cases, perhaps no symptoms at all, while others suffered greatly, sometimes worsening to the point of emergency department visits or hospitalization. There were few telltale indicators of disease progression, and when patients asked if or when they would feel better, there often was not a conclusive answer.

We also learned that the psychological trauma from COVID-19 was significant. For the first time in many patients’ lives, they confronted the specter of their own mortality. They grappled with the stigma, sometimes the guilt, of having the disease, perhaps unknowingly exposing family or loves ones. They struggled with necessary isolation during their illness and literal distance from their support network.

All of this was on top of the immense stress and trauma gripping society. In time, we noticed that some patients who had seemingly recovered from their initial COVID-19 illness began complaining that some symptoms returned or persisted. They asked to return to our clinic for evaluations. As infectious disease physicians, we are aware that post-viral syndromes can occur in a small subset of patients following an initial illness, such as influenza or mononucleosis. But with COVID-19, the number of patients with recurring or ongoing symptoms appeared alarmingly high.

“Persistent symptoms included severe fatigue, shortness of breath, cough and anxiety.”

They reported that simple activities, such as doing laundry, would become so exhausting they would need to go to bed to recover. Many patients were so sick they could not return to work or struggled to manage household duties or care for their children.

Many complained of “brain fog,” reporting that their thinking had become sluggish, fuzzy, or just not as sharp as it once was. One patient described getting into her car, closing the door and then forgetting how to roll down the window. Others experienced speech impairments or difficulty articulating certain words.

These cognitive/psychological symptoms, which also included insomnia and depression, ran concurrent with physical woes: chest discomfort, rapid heart rate, reflux and joint pain. In trying to treat them, we were learning everything we knew about chronic COVID from our patients themselves. (The term “Long COVID” comes from patients who referred to themselves as “long haulers” in online chat forums.) We began to hear similar tales at other health systems across the country, though published, peer-reviewed medical literature and clinical guidelines were scant.

“Early on, we created the Long COVID Interdisciplinary Working Group to bring together specialists across UC San Diego Health to share insights about evolving problems and treatments.”

The working group included colleagues from pulmonology, neurology and cardiology, among others. Psychiatry and spiritual care were integrated into the group, and both have been instrumental in supporting patients through their recovery.

Over the last year, we have gained a much greater understanding of “Long COVID,” or more technically, “post-acute sequelae SARS-CoV-2 infection.” We know now that Long COVID may affect up to one-quarter of patients who experience a COVID-19 infection. The severity and symptoms of the initial infection are not directly related to development of Long COVID. Indeed, the majority of Long COVID sufferers were never hospitalized or in need of intensive care.

Symptoms vary among Long COVID patients. The disease course remains hard to predict, which makes it difficult to help patients manage expectations about recovery. We still just don’t know with certainty when, or even if, they will have a full recovery.

Diagnosis of Long COVID can be challenging. It requires a long interview with the patient to learn the details of their disease course and symptoms. Treatment includes drugs to address specific symptoms, such as heart medication for tachycardia, as well as comprehensive physical and cognitive therapy, plus emotional support.

Many Long COVID patients have significant recovery times, approximately three to six months, but a subset continue to experience severe symptoms longer. As we continue to care for Long COVID patients, we also glean new insights into the pathophysiology of the illness and learn new lessons that will allow us to better care for all COVID-19 patients in the future.

— Clinical

Dose of Reality

Creating vaccines was the first step; getting them into arms required the often unseen efforts of pharmacists

On December 11, 2020, the U.S. Food and Drug Administration FDA granted emergency use authorization (EUA) for the first COVID-19 vaccine (Pfizer), with the Moderna vaccine given EUA just a week later.

Those approvals were the breathmaking result of medical science working at breathtaking speed — developing, testing and approving new vaccines in less than a year when the typical process can require a decade or more. But for all of the celebrating that vaccines were finally available — the only true way to mitigate and end the pandemic — the moment also marked the beginning of an unprecedented time of effort and innovation, of fear, worry and sleepless nights for myself and my colleagues.

As a pharmacist, my fundamental job is to ensure that medicines are delivered, dispensed and used correctly, to help ensure that whatever treatment is prescribed, it works as safely and effectively as possible.

“The approved COVID-19 vaccines represented a monumental challenge at every level.”

They were brand new. Clinical trials aside, a lot remained unknown about how well they would work, what effects and results might be seen, short- or long-term. The vaccines were simple to use — an injection into the muscle of the upper arm, just like a flu shot — but they were complicated to store and distribute, with different refrigeration needs and shelf lives.

Both the Pfizer and Moderna vaccines rely upon mRNA molecules, which are very fragile. To keep them intact, the molecules are encased in tiny droplets of fat, which must be stored at very low temperatures to maintain their shape and shield the mRNA. For the Pfizer vaccine, that meant transporting and storing it at -70 degrees Celsius. (-94 degrees Fahrenheit). For the Moderna vaccine, it was a slightly more balmy -20 degrees C (-4 degrees F).

(The third vaccine, Johnson & Johnson, uses a different approach and can be stored at normal refrigerator temperatures.)

UC San Diego Health has multiple specialized, ultra cold freezers capable of keeping the vaccines appropriately frigid. Still, we fretted about unpredictable power outages or unforeseen temperature deviations. We prepared for every contingency and, on the day after FDA authorization, we received our first allocation of the Pfizer vaccine.

There was huge anticipation. We knew the day of arrival (by FedEx), but not when or in what exact form the vaccines would appear. They came in a single box, which I remember expecting to be much larger. Still, there was so much excitement, hope and worry. This box would start everything! We had reviewed advance instructions on how to remove the vaccine vials from the box, but we read them again and again. We weren’t taking any chances. There were three trays in the box, totaling 2,925 doses. We put one tray in each of three different freezers, just in case one went down.

Our job was to reconstitute and distribute vaccine doses where needed. Initially, vaccines went to health care workers and then over time more broadly to patients and the public. We began delivering first to vaccination sites within the hospitals, carefully calculating the number of doses that could be dispensed during operating hours. We didn’t want to waste a single dose.

When vaccination eligibility expanded and we launched our super stations, everything got more complicated. We were preparing thousands of doses a day to sites indoors and outdoors, across the county. We didn’t sleep. I drank more black coffee than I care to admit. Everybody on the team went all out, and I worried about their physical and mental health. It was hard, but I believed we were making a difference.

I got certified to help vaccinate people; anything to help. My first inoculation was a fellow pharmacist at the RIMAC super station. He said it didn’t hurt, so that was an accomplishment.

“Later, I was asked if I would like to throw out the ceremonial first pitch at the Padres’ “reopening day” game June 17, 2021 at Petco Park. I would be representing UC San Diego Health and all health care workers.”

My kids were so proud. My daughter asked if I would be only throwing out the first pitch or pitching the entire game. I told her it was likely the manager would pull me after my no-hitter (and no-batter). Pregame instructions said there would be no autographs. My children said it was a shame the players couldn’t get mine.

I have been asked what I will remember about the pandemic. I will remember everything as much as I’m sure many would like to forget. Although I wish this didn’t happen, there were good things that came from this pandemic. I will remember the time, effort and energy that my team put in; I am so proud of them and so grateful to be a part of this amazing group of people. There was so much teamwork, not only from the pharmacy team but also in collaboration with people I may not have worked with otherwise.

Through it all, there was fear, frustration and exhaustion, but also excitement, hope, appreciation, gratefulness and love that came from so many directions. You don’t forget such things.

— Clinical

Doctors Without Borders

As the pandemic worsened, UC San Diego Health physicians and staff widened their work, offering experience and help to hard-pressed colleagues in Tijuana

In the spring of 2020, fear was in the air. The COVID-19 pandemic had arrived. Cases in San Diego County were growing: On March 3, there was one documented daily case; by April 3, there were hundreds of reported cases daily and, in time, there would be thousands.

Local hospitals were struggling to accommodate the growing numbers of patients with an infectious disease scarcely understood. There were acute shortages of personal protective equipment (PPE): N-95 respirators and surgical masks, gowns, gloves, eye protection. Ventilators — machines that mechanically pump oxygen into patients who cannot adequately breathe on their own — were limited. Physicians faced prospects of needing to choose who might get a ventilator and who might not, the latter effectively a death sentence.

As a pulmonologist (a specialist in the respiratory system, from windpipe to lungs) at UC San Diego Health, all things COVID-19 consumed my world at the time.

“I saw dozens of patients daily. I lived and breathed the disease metaphorically while my patients did so literally.”

Colleagues convened constantly to consider options. Hospital leadership held virtual town halls to update UC San Diego staff on the situation. In one of them, we discussed what was happening less than 15 miles to the south in Tijuana, Mexico. The pandemic seemed worse there: rising numbers of cases and deaths, but even fewer resources. I wondered aloud if anything could be done.

Over the next few days, I received calls and emails from peers asking how they could support my mission to Tijuana. What? I had no experience with medicine outside of the United States. I had never been to Tijuana General Hospital, the largest in the region and the eventual focal point of our efforts. It did not matter. I realized I needed to step up, to try to make something happen.

I reached out to San Diego County health officials to help me get in touch with others who might be able to assist. Andres Smith, an emergency medicine physician, medical director of emergency services at Sharp Chula Vista Medical Center and president of the board of directors for Cruz Roja de Tijuana, which manages the city’s ambulance services, joined the effort and connected us with officials at Tijuana General, who invited colleagues and myself to visit. It became a large-scale team effort. It needed to be to have a chance at success.

We did not go as medical saviors. We had no plans to take over, to treat the hospital’s patients. We went to see for ourselves what was happening and share what we knew, what we were learning every day in our own increasingly crowded intensive care units. We went to learn.

“We expected to find a hospital at the breaking point. It wasn’t, at least not in spirit and determination. “

There were critical shortages of people, equipment and technological support, but there was a strong desire among everyone to help as many as possible. Tijuana General had become a COVID-19 hospital, entirely turned over to the care and treatment of infected patients. One had to wear full PPE all day, every day. It was exhausting. Medical personnel were doing their best. They were smart and motivated, but there weren’t enough of them. Many doctors and nurses had already died of the disease. Deemed at high-risk, physicians over the age of 60 were not permitted to treat COVID-19 patients, leaving that duty to younger, less experienced colleagues pulled in from elsewhere. Almost no one possessed specialized training or extensive experience in pulmonary issues and respiratory disease.

For the next month or so, in May and June, volunteer teams of UC San Diego Health medical staff visited the Tijuana hospital daily. We couldn’t treat patients, but we could advise and consult with the doctors and nurses who were providing direct care. We proposed ways to optimize ventilator settings, when specific interventions might be implemented, how to deploy bedside ultrasound to decrease complication rates and myriad other observations learned from our own practices and patients.

It proved an unimpeded give-and-take of knowledge and compassion. We invited staff from Tijuana General to visit UC San Diego Health to see how we were set up and how we did things. I remember discussing the case of a COVID-19 patient with rheumatoid arthritis with one of our Mexican colleagues. He was a trained rheumatologist and thrilled to talk — at least in that moment — about a disease he knew a lot about and who had had minimal opportunity to treat in the preceding months.

Groups gave money in support. The San Diego Rotary Club donated $25,000 to purchase oximeters, a tool critical to monitoring patients’ blood oxygen levels. Other funding bought ventilator humidifiers, a necessity for patients being mechanically ventilated for long periods.

While we couldn’t address every need, other people, groups and institutions also rose to the challenge. We focused on what we could do with the greatest benefit. Most of all, we gave of ourselves — our time, presence, expertise and training — and it helped.

“And that was the goal: to help.”

— Clinical

For Whom the Pandemic Tolled

A physician who treated hospitalized COVID-19 patients and who experienced the disease herself recalls lessons learned and patients lost

In November of 2020, with both the holiday season and pandemic looming, I asked the public to continue wearing masks to protect themselves and to honor their communities, and to honor those working diligently to save the lives of patients infected by the SARS-CoV-2 virus.

I spoke from personal experience, having had COVID-19 myself, fortunately, a mild case, but exhausting nonetheless.

I encouraged families to have difficult conversations while in good health to identify surrogate-decision makers and to consider executing an advanced directive. With the promise of effective vaccines, it seemed like the final push toward the end of a tumultuous era in world history.

Yet through December and January of 2021, some of our worst fears were realized in the unprecedented numbers of critically ill patients admitted with COVID-19, both locally and nationally. A cursory look at COVID-19 hospitalizations suggests these numbers fell dramatically in February and March as vaccination efforts expanded, but lost in translation was the great emotional and societal costs hidden behind these numbers.

As a critical care physician, dealing with death and dying is as much a part of my job as saving lives. Navigating conversations with families when patients fail to improve or progressively worsen is an acquired skill that my colleagues and I work hard to execute with compassion and empathy.

“The majority of hospitalized patients we treated survived. They improved and were discharged from the hospital to continue their recoveries, some at home and some at rehabilitation facilities.”

But many did not, despite the most aggressive forms of intervention, novel therapies and state-of-the-art life support.

There remain significant public misconceptions about the victims of COVID-19. Maybe they were chronically ill or knowingly participated in some risky behavior that lead to their illness, but I can assert with confidence that the vast majority of patients my colleagues and I treated were ordinary people of all ages: parents, children, sisters and brothers, grandparents, hard-working, bread-winning, contributing members of our society. They disproportionately represented minority groups, often from underserved communities. We must work harder to understand this epidemiology and its implications for future pandemics.

We are extremely fortunate that as vaccination rates have risen, we have not replaced many of those lost to COVID-19 with equal numbers of new patients —though we still admit new patients every week. Now, we face a different epidemic: those suffering from chronic critical illness. There are many patients who linger in intensive care units across the country or in long-term acute care hospitals. These patients and their families live in limbo, waiting to see whether the body will heal with more time or ultimately require drastic action, such as a lung transplant. If the worst happens, and they succumb to their disease, we feel this even more acutely, having cared for them and their families often for months on end.

As I write this, the numbers of vaccinated individuals are rising, perhaps to reach the moving benchmark of herd immunity. But there persists a spectrum of hesitancy, which cannot impinge upon maximum
effort to protect those who are vulnerable not by choice, from children not yet eligible to be vaccinated to those with compromised immune systems who may not be able to produce a robust response to vaccination.

For many of us, not just frontline workers, but all of those who have grappled with the demands of work, life, school and childcare throughout the pandemic, a fog of exhaustion persists. Processing the experience of the last year and a half will take time, and there remains much to be learned medically, scientifically and personally. My hope for all is that as we return to some semblance of normalcy, we do so with a renewed sense of gratitude and awe for what we still have and deep reverence for all we have lost.

That, to me, will feel like real progress.

— Clinical

You Can’t Go Home

The pandemic brought hospital staff and patients closer together, even as it imposed distance and isolation from family and friends

I can still recall the moment our unit transitioned from a progressive care unit (PCU) to a COVID-19 unit. It began on a mid-March morning. I kissed my husband and my boys goodbye before leaving home for work, not really knowing how this emerging pandemic would change that morning — and so many mornings after.

During my lunch break on March 11, 2020, I called my husband and said, “This is serious. I think we have to make some adjustments at home for about two weeks until we figure out what is going on with this virus.” The two-week plan would require him to take care of the kids while I stayed in my elderly parents’ garage to avoid any cross-contamination.

“The two-week plan became four weeks, then more. I would not come home again to my family and my own bed for six months.”

My co-workers stepped up to provide me with much-needed support during this difficult transition and time. I have so much respect and admiration for all of my colleagues. Teamwork allowed us to persevere through the pandemic. It was always a group effort: doctors, nurses, clinical care providers, respiratory therapists, physical therapists, occupational therapists, environmental services team members and others.

We needed to be flexible and innovative in how we provided nursing and patient care. We preplanned all of the supplies we would require before stepping into patients’ rooms. As caregivers, we were in rooms for hours: starting IVs, drawing blood, providing medication, passing meals and making sure all of the patient’s necessary activities were completed.
There were moments of distress, frustration and anxiety because policies were constantly changing in response to changing conditions. There were moments of fear when there was talk of a personal protective equipment shortage nationwide. Seeing the large shipping containers of equipment and materials as we prepared for the surge, it seemed like there would be no end to the pandemic.

I still recall a married couple, both admitted for COVID-19. They were initially treated in the Intensive Care Unit. The husband was eventually transferred to my unit. The wife sadly died.

Every morning we would set up his designated iPad so family could communicate with him via Zoom. Initially, we had to hold the iPad for him, but as his health improved, he was able to hold it himself.

Every day he got better. Every day, he would ask about his wife. His family had not yet told him. It was painfully difficult to change the conversation, per his family’s request. They did not want him to become depressed or lose strength knowing she was no longer nearby. They wanted him to get better before telling him that the virus had taken the love of his life. In time, using multiple therapies, he improved enough to go home. It would be a different place, but his story is still one of success and a reason we all worked so hard for so long.

Although I spent more than six months physically separated from my family, I am honored to have been a part of the UC San Diego Medical Center in Hillcrest’s COVID-19 unit. Through the process, I was able to gain knowledge, respect and admiration for my work colleagues, and was humbled by a virus that affected all aspects of our lives.

When emergency use authorizations were granted for the COVID-19 vaccines, I felt a sense of relief. With each shot, I knew we were one step closer to the end of the pandemic.

Of course, the eventual end of one pandemic does not mean the end of all pandemics. There will be others, but I have learned from and leaned upon my co-workers, family and friends, and I know we can meet whatever comes next.