Title: Long COVID AIRE (Access, Insight, Research, Education) Project

Applicants:  Carla Kuon MD, Lekshmi Santhosh MD, Edwin Charlebois, MD PHD, Kim Rhoads, MD, MS, MPh

Community Partner:  UMOJA Health Coalition

Primary contact: Carla Kuon (Carla.kuon@ucsf.edu), 1545 Divisadero Street #411, SF, CA 94105

Project start date:  January 5, 2024- December 31, 2024

Estimated total budget: 150,000 USD 

The emergence of the COVID-19 pandemic and the sequela of Long COVID further expose continuing healthcare gaps for underserved and vulnerable communities across the US and locally in particular.   The government accountability office has estimated that Long COVID affects up to 23 million in the United States alone.¹ Between 10-30% of COVID survivors are affected with long COVID, making this a public health crisis. It is also clear that communities with existing disparities are at increased risk for both worse COVID outcomes and increased risk of Long COVID. Major challenges to access to resources and information to help diagnose and manage Long COVID  for underserved and vulnerable communities are a significant unmet need and must be addressed. 

Our proposed project,  Long COVID AIRE pilot (improving Access, Insight, Resources, and Education) is a proposed partnership between the existing UCSF Long COVID OPTIMAL-IH clinic and the community-based Umoja Health Coalition³ [https://www.umojahealth.org/about] with the goal of providing a framework for community outreach, education, training and research, to address the multiple challenges presented by Long COVID in San Francisco and the Bay Area. 

Specifically, the Long COVID AIRE Project will:

1)    Increase outreach to affected communities of color providing new information channels about Long COVID and available Long COVID resources for diagnosis and patient self-management.

2)    Develop tailored educational materials for providers and patients on Long COVID diagnosis and management for underserved and vulnerable communities.

3)    Expand existing capabilities of UCSF OPTIMAL to provide Group Medical Visits for patients from local underserved and vulnerable communities.

4)    Develop links from community-based organizations to Long COVID research opportunities to ensure representative data collection and outcomes for significant disparities populations.

5)   Evaluate program feasibility and outcomes through research, in addition to adding opportunities for Long COVID research.

BACKGROUND: Long COVID, according to the Centers for Disease Control and Prevention (CDC), is the occurrence of new, returning, or ongoing health problems 4 or more weeks after an initial infection with SARS-CoV-2, the virus that causes COVID-19. It is also known by other names, including post-acute COVID, post-COVID conditions, and chronic COVID.

Symptoms of long COVID vary from person to person. They may include fatigue, cognitive impairment (or "brain fog"), muscle or joint pain, shortness of breath, heart palpitations, sleep difficulties, and mood changes. Long COVID can affect multiple organ systems and cause tissue damage, as well as disability.

Long COVID Challenges and un-met needs for underserved and vulnerable include:

1. Diagnosis and treatment: Many patients experience a delay in receiving a diagnosis of Long COVID, and subsequently have the experience of seeing multiple specialists to address their multiple disparate symptoms.  While the Department of Justice and Health and Human Services has issued guidance stating that the condition qualifies as a disability under the Americans with Disabilities Act of 1990, many patients experience delayed diagnosis and treatment resulting in increased morbidity, chronic illness, and disabling symptoms
2. Economic and racial disparities: According to the NIH, Black and Hispanic Americans are more likely than white Americans to have symptoms of Long COVID but may not be diagnosed as such because of coding changes.² Risk factors for long COVID, such as pre-existing inflammatory illnesses, diabetes, obesity, respiratory symptoms like asthma, and autoimmune illness, are prevalent in this community and often under-treated or undiagnosed. Lack of access to integrative clinics or clinics that treat chronic fatigue limits options for treatment even after a diagnosis is made.
3. Economic challenges: People with long COVID often leave the workplace or work severely reduced hours, causing them to lose wages and employer-based health insurance. This is increasing the rate of lost wages, SSDI applications, and overburdening safety health networks and public hospitals or clinics such as UCSF.   New approaches to Long COVID care delivery that expand access and leverage scarce resources are needed
4. Research]: There has been to date poor and scarce research on CFS/ME syndrome preceding the COVID pandemic, leading to a poor understanding of the causes for this illness.  The Biden administration has allotted 1.15 billion dollars in supporting research through the RECOVER initiative, yet it has faced criticism by patient advocates for moving too slowly and not meeting the acute needs of patients currently experiencing disability from this illness.  There is also historically low inclusion of people of color and underserved populations in long COVID research. The 23 million patients affected by Long COVID are in desperate need of answers and action now.

    

   Anticipated benefit for underserved or vulnerable communities in San Francisco: will increase education regarding Long COVID workup and treatment options, increase access to care for vulnerable populations by education on the patient and provider side on a continuum.

    

   RESOURCES:

   UCSF OPTIMAL-IH (Long COVID Clinic)  Dr. Lekshmi Santhosh is the associate director of the pulmonary critical care fellowship at UCSF, Director of the Department of Medicine Grand rounds, creator, and director of the post COVID optimal clinic.  She is the recipient of UCSF Health exceptional physician award. Dr. Santhosh and Dr. Carla Kuon have partnered to create the OPTIMAL-IH clinic which is addressing the unmet need of Long COVID patients. Dr. Kuon is an expert in chronic fatigue syndrome and Long COVID, Chair of the Osher Center’s educational case conference series, and author of the book “The Long COVID Solution.” Dr Kuon has created innovative care models such as group medical visits to maximize the ability of a single specialty provider to serve the many. However, this model is rapidly becoming overwhelmed, and it is insufficient to address the vast needs in the population.  Just three months after the OPTIMAL-IH opened, Dr. Kuon’s GMV group visits are booked into the Spring of 2024 and the demand is growing each day.  It is evident that educational outreach to and partnership with the community at large is needed, in addition to bimodal communication with primary care clinicians to establish partnerships of care that increase the number of providers equipped with skills to address Long COVID, and decreasing reliance on specialty care. Patients who are knowledgeable of this syndrome, the diagnostic and treatment options, will be better positioned to advocate for themselves to their primary care providers.

    

   Umoja Health Coalition³ [https://www.umojahealth.org/about] is a community-based coalition initially created by Dr. Kim Rhoads to address the COVID-19 health-related needs of underserved communities of color in the Bay Area.  After taking on COVID-19 and vaccination under a new model of community led care delivery, it has broadened its scope to address other chronic illness and unmet social needs that have left communities of color vulnerable during the COVID pandemic. The Umoja Health Coalition meets biweekly to discuss the health needs of the community and to provide ongoing education. Professor Edwin Charlebois, MD, MPh, a senior scientist at the UCSF center for AIDS Prevention Studies and a principal investigator at the Research coordinating Center of the Multiple Chronic Diseases Disparities Research Consortium—and member of Umoja Health Coalition--will provide his expertise on research analysis, outcome measures. Dr. Kim Rhoads, founder and director of UMOJA,  will advise on the direction of the Umoja health partnership. Dr. Rhoads has expertise in community outreach has been integrated into this proposal and the budget.

    

   The Long COVID AIRE project aims to increase outreach to two communities: the patient community and the primary care community, while supporting ongoing vital services at UCSF’s Optimal Clinic. In addition to creating a curriculum to educate patients and clinicians, there will be opportunities to address mind/body components of Long COVID symptoms--including autonomic dysfunction--with techniques like breathwork and mindfulness approaches such as guided imagery. Resources are needed to expand the OPTIMAL clinic’s reach, to research intervention outcome measures, and to maintain key services such as social work, pharmacy, and clinical care.   

    

   The Osher Center’s research program has a robust portfolio of externally funded research, including two NIH-funded training programs for pre- and post-doctoral fellows, the Training Researchers in Clinical Integrative Medicine (TRIM) Program and the Summer Institute on Integrative Health Equity and Applied Research (IHEAR). Research fellows will be involved with the evaluation of the proposed pilot of the AIRE project. This will provide a valuable training opportunity in community-based, integrative health initiatives for vulnerable patients in the San Francisco bay area.

    

   MZHF Values in Action: The Long COVID AIRE Project embodies multiple MZHF’s core Jewish values including:

   • Service: by addressing the significant un-met community health need of access to information and Long COVID care resources
   • Social Justice: focusing on correcting imbalances, inequities, and injustices in Long COVID diagnosis and management for local underserved communities of color
   • Community Building: will achieved by bringing together existing community-based coalition with the Long COVID provider community, strengthening ties and bi-directional information exchange
   •  providing new educational tools, training, and information to providers and affected Long COVID communities
   • Innovation: through its use of Group Medical Visits to optimize scarce resources
   • Compassion: providing patient-centered care for persons experiencing Long COVID and challenged by isolation and barriers to access to care
   • Education and Leadership (Limud u’Manhigut):  This project will support and involve leadership of community organizations and develop collaboration between the UCSF Osher Center and UMOJA Health. It will also contribute to education programs by providing opportunities for community-engaged learning and applied research projects for trainees at UCSF and other institutions.

   UMOJA Community Board of directors:

   Dr. Darla Cooper, President

   Jeri Marshall, l VP

   Laurin Williams, student board member

   Dr. Teresa Aldredge

   Dr. Judy Mays, Secretary

   Kenyon Callahan

   Dr. Ernie Bridges

   Dr. Lisa Cooper Wilkins

   Ray Green

   Dr . Brenda Thames

   Marcus Dawson, treasurer

References:

1. https://www.gao.gov/products/gao-22-105666
2. https://www.bmj.com/content/380/bmj.p535
3. https://www.umojahealth.org/
4. https://emrespublisher.com/open-access-pdf/transcutaneous-auricular-vagu...