SIDNIE CHRISTIAN:
Welcome to Living with Long COVID, Stories, Science, and Public Health.
My name is Sidnie Christian, and I’m a Senior Analyst in infectious disease preparedness here at ASTHO.
Long COVID continues to affect millions of people worldwide, with complex and often long-lasting impacts on health and daily life.
Today’s conversation will not only explore the science behind long COVID, but also the personal stories of those living through it, and how we can work together to raise awareness and strengthen support for those affected.
We’re joined by an incredible panelist of experts and advocates who bring both professional expertise and lived experience. They’ll share more about their backgrounds in just a moment, but briefly, our panelists are Karyn Bishof, the president and founder of the COVID-19 Long Hauler Advocacy Project.
Ms. Heather Drummond, I’m the Deputy Director for the Center for Access to Whole Person Care at the Washington State Department of Health.
Dr. Monica Vidaurrazaga, Infectious Disease Lead Physician at Family Health Centers of San Diego. And finally, Ms. Kathleen Banks, a long COVID advocate.
Thank you all for being here, and for contributing to this important and timely conversation. With that, I’ll turn it over to Karyn to get us started.
KARYN BISHOF:
Hi, everybody. Thank you so much for being here today with us. My name is Karyn Bishof, and I am a person with long COVID since March 2020. I am the founder and president of the COVID-19 Long Hauler Advocacy Project, and a former firefighter, paramedic, and educator. I held a Bachelor of Science in Exercise Science and Health Promotion.
And in terms of my long COVID involvement, I have been involved with the National Academies of Science, Engineering, and Medicine, AHRQ, CMSS, APHA, NIH RECOVER, CDC, and several coalitions.
The COVID-19 Long Hauler Advocacy Project is a long COVID 501C nonprofit organization founded in 2020 by patients and led by those living with the condition that has grown to 60 chapters across the U.S. state and territory.
U.S. states and territories, along with community-based chapters, including pediatrics and caregivers. With a focus on education and resource development, we convene cross-sector stakeholders, advise research and policy, provide peer support, and advocate fiercely for our community.
As I said, I contracted COVID-19 in March of 2020. While working as a firefighter paramedic. My case was mild, I did not require hospitalization, and I was only able to access testing at that time because of my role as a firefighter paramedic.
I quarantined for 2 weeks with the rest of my crew and returned to work still feeling unwell. Instead of recovering, my condition progressively worsened, and within less than a month, I lost my ability to work and became disabled due to COVID-19 and long COVID.
Before that, like I said, I was a healthy K-12 physical education and health teacher. I coached, I was director of athletics, and I was an active single mom.
It has been 6 years that I have been waiting for meaningful help, treatment, or solutions, none of which have come. I spent 5 years fighting for workers’ compensation and waited years to be approved for Social Security disability.
I’m just gonna run you through a brief picture of what my personal long COVID history looks like. And prior to getting COVID and developing long COVID, I dealt with hypertension, PCOS, and typical sports injuries. But after getting COVID-19, I developed many, many, many things, from long COVID, including POTS, lupus, insomnia, chronic migraine, gastroparesis, depression, PTSD. I had myocarditis for 2 years, and as you can see, with this many conditions.
You are led to have to navigate many, many specialists, which is for a patient who is unable to work and do typical activities of daily living, this becomes a full-time job. It’s expensive, and our providers are not talking to one another. I’ve gone forward and I’ve had to hire a patient advocate to help me manage just the coordination of my care alone. My care includes over 15 medications, via every route that one can take, and in the last year alone, I’ve had multiple cervical lymph node excisions, bilateral tonsillectomy, and two chest port placements.
In 6 years, these are just my abnormal labs, from positive and high, and negative and low, and as you’ll see, many of these are specialty labs and not things that the majority of providers are running.
Again, this is time-consuming, costly, but again, a picture into how severe and the systemic nature of long COVID and how it impacts every aspect of a person’s living and health.
Long COVID is a serious, chronic, and disabling and potentially fatal condition that can follow even mild COVID-19 infection. It’s not rare, it’s not resolved, and it’s not behind us. What you just saw was my singular picture into long COVID, but there’s tens of millions of us living with long COVID in the United States, and hundreds of millions more globally.
In fall of 2022, the CDC serology data showed that more than three-quarters of the U.S. population had already been infected with COVID, and CDC data from the same period showed approximately 1 in 5 reported developing long COVID. That’s already tens of millions of people back in fall of 2020 with long COVID.
Since 2020, U.S. disability rates have risen by more than 35%, with millions more now living with functional limitations. Labor force data reflects that same trend, with substantial increases in the number of disabled individuals participating in or exiting the workforce.
And our children are not spared.
NIH Recover Pediatrics estimates found that long COVID affects 14-20% of children, and has surpassed asthma, which has historically been the most common chronic pediatric condition in children, underscoring the scale of this crisis. COVID-19 infections lead to immune dysregulation, autoimmunity, cognitive decline, cardiovascular disease, organ damage, autonomic dysfunction, neurological impairment, cancer, and increased mortality. National Mortality Surveillance has identified thousands of U.S. deaths with long COVID noted on death certificates, which is unfortunately a figure that experts acknowledge is a substantial undercount.
And we know that long COVID is costing economies hundreds of billions to $1 trillion annually.
In 2024, NASEM developed a definition that highlighted the chronic systemic disease state with multiple organ involvement due to SARS-CoV-2 infection.
We wanted to highlight that long COVID can result from mild, severe, or asymptomatic acute infection. It can be continuous from acute infection or delayed in onset by weeks or months. It can range from mild to severe, or alternate. It can affect anyone. It can exacerbate pre-existing conditions, it can impair an individual’s ability to work, and it can be diagnosed on clinical grounds, as there is not yet a biomarker that exists to demonstrate long COVID conclusively.
This definition was developed because of the many definitions and criteria being used across research and clinical care, which limited meaningful and accurate use of the data. The goal was to establish a standard definition to expedite education, research, clinical care, and reduce waste.
The NASAM Committee also recommended that HHS reconvene this committee in 3 years as new evidence emerges, because the definition and the education surrounding it will continue to evolve over time as we learn more about this devastating condition.
Since 2025, many of the essential long COVID programs that were developed and shaped by the patient community were eliminated, including federal offices, advisory bodies, care networks, public resources, and research funding.
Significantly increasing the demand for C-19 Labs’ leadership in education, coordination, and strategy to address these critical gaps.
Since the closure of these programs, HHS has convened a long COVID roundtable in September, and during Long COVID Awareness Month, both HHS and CDC launched new long COVID websites. However, despite these signals of engagement, meaningful action has stalled and resources have lacked. In response, C19 Lab has continued to move forward with independent action and strategic planning designed to serve at scale Whether implemented federally or at the state level, with the goal of achieving both.
So as I said, we are a 501C nonprofit organization with chapters across every U.S. state and territory, and this national network allows us to connect directly with patients and caregivers, understand local needs, and develop coordinated state and national strategies to deliver solutions and support the millions affected. We bring together experts across sectors, patient leadership, engagement, medicine, research, and public health to operate as a unified force. We center education at the foundation of our work.
Recognizing that it informs and drives advocacy, research, resource development, cross-sector convening, and peer support. Our goal is to build longitudinal infrastructure and resources to support a meaningful, urgent, and adequately scaled response to long COVID.
Previous models in the past were not necessarily successful. We’ve had initiatives that have gotten too big to really facilitate the mission at hand, and many of the people needed in the room are not necessarily there. We have other efforts that are really great and specific, or state-specific, or center-specific, but they’re not scalable or coordinating at the national levels.
Thus far, one of the most, helpful and successful programs that we’ve had was the Office for Long COVID, but unfortunately, that was one of the programs that we lost in 2025.
So, for our desired response model and how it helps restore trust in public health, that begins with saying that the patient community stands by, which is nothing about us without us. That means that patients should be involved from every stage of the process, from brainstorming, planning, recruiting, advertising, facilitation, analysis, dissemination, and longitudinal flow-through.
What we envision is having an entity like C19 LAP and a coordinating entity, such as, or an entity similar to ASTHO, that can help organize and coordinate curricula and action with state and territorial health departments, who can then help implement actions at the state level. This is really important, and again, you know, establishing a national, state-based long COVID public health network is what is going to help support the urgent and skilled response that we need across the nation. So by Investing and centering education, we build recognition and the ability for assessment, which increases documentation and data. That documentation provides patients access to care, support services, coordination, and improved quality of life, and that data informs public health policy, communications, care delivery, legislation, and resource allocation. All of those actions lead to better outcomes, from strengthening public health infrastructure to improve care delivery, coordination, and access, reduce costs to patients, families, and communities, increase labor force and educational participation, economic improvement, improved restored public trust, reduced burden on the healthcare system and support services.
Strengthen preparedness and response frameworks, reduced stigma and discrimination, and again, better data, better policies, and adequate funding and resources.
Education can come in the form, and should come in the form, of TV, radio, social media, public transit, airports, hospitals and doctors’ offices, clinician CMEs and medical societies, medical school curriculum, conferences and grand rounds, partnership with long COVID organizations, and other locally-based community-based organizations.
While we’ve lost many of our programs and resources, there are still plenty of resources that do exist that we can be using.
And tens of millions of people in the United States need your help, and we want to work with you.
We would like to seek partnership with state and territorial and tribal departments of health and other national organizations, because we need to develop and scale public health and clinician education. We need to build and standardize long COVID resources, support research, data collection, and clinical documentation, strengthen care delivery and coordination, advance policy and systems level change, expand peer support and community integration, support medical education and workforce development, and bring new clinicians, researchers, and stakeholders into the field. Together, we can build and coordinate scalable national response to long COVID, and we start with doing that in partnership with patients. Thank you so much.
KATHLEEN BANKS:
Thank you so much, Karyn. That was an excellent presentation. And thank you, ASTHO, and thank you, everyone here. It’s a pleasure to be here today to talk about what it’s like to access care and treatment for long COVID.
My name’s Kathleen Banks. I’m a health systems researcher with expertise on patient-physician relationships. I’m currently a doctoral candidate at the Boston University School of Public Health, and I focus on access for healthcare… access to healthcare, pardon me, for people living with long COVID.
If there’s one thing I want to leave you with here today.
It’s that there is treatment for long COVID.
And I know there’s treatment for long COVID, because for several years, I spent most of my time as a professional patient.
I developed COVID in January of 2022.
It was my first and only infection after being vaccinated 3 times.
It was less than one month after I had defended my proposal for my dissertation. I was on track to graduate in August 2022.
But I had to take medical leave that semester, because in March 2022, two months after my infection, after feeling symptoms of dizziness and fatigue, my doctor and I knew that I had long COVID.
I would later learn that those were symptoms of dysautonomia and post-exertional malaise, or PEM.
I would spend hours in the dark under a weighted blanket, trying to soothe sensory sensitivity and fatigue.
I could barely leave my house to take my dog for a bathroom break. Most of my day was spent sleeping, and yet I would never feel rested.
Every morning for 3 hours, I would spend all of my energy scouring the internet, online chat groups, social media, anything to see what treatments were available.
Because as a public health professional and translational researcher, I know that it takes 12 to 17 years for evidence to get to the point of care.
As a human being, I do not have 12 to 17 years to get back to my life.
By the time I found information that described my symptoms and the drivers of long COVID, the largest battle for accessing healthcare was just beginning.
Because it wasn’t that the treatment wasn’t available, it was that the doctors did not understand long COVID, and did not believe me.
I was dismissed when I suggested testing for potential virus reactivation, such as Epstein-Barr virus, or treatments such as Mestinon for my dysautonomia symptoms.
Personally, I was shocked.
I have worked in healthcare for the better part of 20 years. I speak doctor fairly fluently, and I was being told that there was no treatment for long COVID, and what I was suggesting was unacceptable to consider.
And I know I’m not alone. We have data across continents showing that people are being disbelieved and dismissed by their doctors.
People living with long COVID manage their care and treatment across multiple specialists with little to no external support.
Most patients describe their healthcare pathway as, quote, complex, difficult, and exhausting.
A major concern among patients is that healthcare providers lack knowledge about long COVID and do not recognize that knowledge gap.
In a national survey of U.S. physicians, nearly 80% agreed that long COVID is a problem in the U.S. However, only 7% felt confident in treating long COVID.
Less than one-third of primary care physicians felt prepared to recognize or evaluate long COVID, and among primary care physicians who felt unprepared to evaluate long COVID, only 53% had access to a trusted colleague with long COVID experience.
As I mentioned earlier, patients report that healthcare providers downplay the severity of their symptoms, and are unable or unwilling to offer any remedy. Standard testing panels, scans, and biometrics come back as normal, even when the patient is visibly shaking and breathless.
Patients report that physicians are reluctant to prescribe or approve any promising drug or treatment for symptoms because they are not evidence-based or FDA approved for long COVID.
Phrases such as, you’ll get better with time, have been offered in lieu of treatment.
Patients report disbelief or gaslighting by primary care providers, lead them on lengthy diagnostic oddities that can take months or even years.
Poor experiences in the exam room often lead patients to avoid seeking in-office healthcare altogether.
The lack of outpatient treatment may prove costly.
Long COVID patients were 52% more likely to have an urgent care visit.
94% more likely to have an emergency room visit, and 48% more likely to be hospitalized compared to people without long COVID.
One thing that is hindering treatment for long COVID symptoms is that health systems are not designed to accommodate illnesses for which there are no diagnostics or FDA-approved treatments.
This leaves clinicians with little to no room to explore patient symptomology during the standard 40-minute initial or 20-minute follow-up appointments.
Physicians report that they rely on the patient narrative when treating long COVID, which can be complicated by language and cultural barriers. Moreover, patients with long COVID exhibit extensive cognitive damage, often presenting as cognitive decline or brain fog, which makes communication difficult.
Patients may lose their words, misunderstand their physician, or require extra time to describe their symptoms.
With the average face time between patients and physicians at only 16.5 minutes, communication problems stemming from long COVID can lead to heightened stress for the clinician, misdiagnoses, deteriorated trust, and patient distress.
Despite these challenges, management and treatment options for long COVID symptoms exist.
Within both primary and specialized care.
Clinicians, researchers, patients, and advocates have noted the importance of identifying and treating the symptom clusters while clinical trials for root causes of long COVID are underway.
As of 2026, multiple clinical guidelines document how these symptom clusters can be treated with existing protocols. However, the translation of these practices to the point of service remains less than desired.
And are typically attained by only those who have the financial means and privilege to access care.
Although thousands of peer-reviewed publications about long COVID exist, the protocol for symptom treatment have been created, the elephant in the room remains. What will it take for clinicians to exercise long COVID treatment at the point of care? Or at the very least, transfer patients to knowledgeable specialists.
As I mentioned earlier, health systems are structurally ill-equipped to give clinicians adequate time to explore the multi-systemic conditions associated with long COVID.
This remains one of our largest challenges, and one that I hope we, as the public health and healthcare community, can begin to address.
Because while there is not a cure for long COVID, There is not an FDA-approved long COVID medicine.
There is treatment for long COVID symptoms.
We can build the necessary systems to get that treatment to the point of care.
And if we can feel just 10% better, even… by even one of those interventions. If we can improve our quality of life by just 10%, That is 10% closer to getting back to our lives.
Thank you very much.
HEATHER DRUMMOND:
Good morning, or good afternoon, everyone. It is my pleasure to share about the work we are doing at the Washington State Department of Health to address long COVID.
Okay… My name is Heather Drummond, I use she/they pronouns, and I serve as the Deputy Director for the Center for Access to Whole Person Care at the Washington State Department of Health.
I plan to discuss long COVID data, and the work we are doing to monitor long COVID prevalence in Washington State, and the various programmatic initiatives we have underway to build sustainable resources for communities, providers, and public health partners.
According to the Census Household Pulse Survey, as of September 2024, approximately 6.2% of Washington adults were experiencing long COVID.
Additionally, 1 out of every 6 of these individuals with long COVID reported significant activity limitations.
The chart below breaks down prevalence data from the Household Pulse Survey by age, sex, and urban-rural demographics.
As you can see, prevalence is highest in the 35 to 49 year old age group, with those who identify as female, and slightly higher in rural communities.
This chart shows the percentage of Washington adults who have ever experienced long COVID symptoms as a percent of all those who have reported a COVID-19 infection.
For example, in August 2024, 27.1% of those who have reported a COVID-19 infection mentioned that they experienced long COVID symptoms currently or in the past.
And as we’ve already described, this is symptoms lasting 3 months or longer that an individual did not have prior to their COVID-19 infection.
The last chart here, again, the timeframe is June 2022 to August 2024, and the blue line, or dark line here, is national data, while the orange line depicts Washington state data.
So, for example, in August 2024, roughly 17% of Washington adults with long COVID report significant activity limitations in their daily life.
So, our team has been working to develop a surveillance system for long COVID to better understand trends in prevalence over time.
At the core of this work is, ensuring that it’s as passive as possible, meaning we’re using data that’s already being collected through healthcare encounters rather than asking providers or patients to report separately.
No single data source gives us the full picture, so we’re taking a multi-source approach.
The boxes at the top here outline the various data sources that we are currently reviewing.
Our most advanced effort is with Essence Data, which is our emergency department syndromic surveillance platform. It gives us near real-time data on emergency department visits statewide.
And we’re actively developing long COVID queries using both the specific diagnosis code for long COVID, U09.9, and broader symptom-based patterns, like fatigue, shortness of breath, and cognitive issues. So this work is the furthest along.
We’re also evaluating the All Payer Claims database, which would let us track healthcare utilization across Medicaid, Medicare Advantage, and with commercial health plans.
That’s in a feasibility assessment phase right now. The data governance process is pretty complex, but the analytic potential is significant because claims data would allow us to calculate actual rates and track patients over time.
Hospital discharge data is in the planning stage and would give us a clearer picture of the inpatient burden.
And we’re also beginning to explore two additional streams in purple here, electronic case reporting data through our statewide disease reporting system, WDRS, and electronic health records, which could provide richer clinical detail.
These are earlier in exploration, but represent where we want to go.
One important design decision we’ve made is to use a tiered approach to case identification. For data sources that use standardized codes, like claims and hospital records, we anchor our definition to the specific long COVID diagnosis code.
But for our ED surveillance data, we use a broader approach that also captures symptom patterns. We keep these reported separately and never merge the data because they’re measuring somewhat different things, but we feel creates sort of a more complete picture, recognizing, the multiple reasons, that hinder being able to document a diagnosis for long COVID.
And to put this in context, our team conducted an economic analysis, estimating that long COVID is responsible for approximately $1.53 billion in direct medical costs in Washington state alone.
As I mentioned previously, roughly 6% of Washington adults report experiencing long COVID, and as we know, that burden can fall disproportionately on communities that are already facing barriers to healthcare access, which is why surveillance and equitable planning go hand in hand.
So, where are we headed? I wanted to highlight four areas where we see both opportunity and need.
First, we need sustained surveillance infrastructure. Long COVID isn’t going away, and we need dedicated, ongoing data pipelines, not one-time analyses.
Second, data governance and modernization. Some of the data sources we need have complex access processes that were designed for a different era.
We need agreements that can flex with emerging conditions and emerging knowledge without requiring lengthy renegotiation every time.
Third, equity-centered analysis. We know long COVID doesn’t affect everyone equally, and so being able to deepen our ability to stratify by race, ethnicity, geography, and insurance status can help us direct resources to where they’re most needed.
And fourth, cross-jurisdictional collaboration.
This work is strongest when we are connected with local health jurisdictions, accountable communities of health, clinical partners, patient advocates, and national efforts, as have been shared earlier today.
We also have embarked on… oh! The next few slides will outline the various programmatic initiatives that are underway, with the first being a training module for community health workers.
We are building a four-module training that will be embedded into our existing statewide community health worker training, which is housed here at the Washington State Department of Health.
The training focuses on identifying long COVID, supporting individuals who have long COVID, and connecting them to various, health and social support resources. The training is being developed in both English and Spanish, and is expected to launch this coming month.
We also have embarked on a partnership with the University of Washington Long COVID Clinic, which is one of just a few long COVID clinics across the country, and the only clinic in Washington state.
Our primary goal is to increase patient access to long COVID treatment statewide.
To that end, we are funding the development of multiple opportunities for clinical education, in addition to the awareness-raising and stigma reduction goals in the provider-facing aspects of our public campaign, which I’ll share more about in our next slide.
The first is a module on long COVID that will be embedded into the University of Washington Medical School curriculum, which has been developed in collaboration with UW med students.
The second is an on-demand physician training that will be modified from that med school curriculum and allow providers to take individual modules as needed.
And the final resource is a clinical decision support tool that will be embedded into the electronic health record system. We’re working with Epic on this one, and we’ll include logic to prompt providers for follow-up.
If there’s a record of a positive COVID test, or it meets other clinical criteria.
The tool will also include flowcharts for providers to follow for diagnosis and treatment guidelines. And I did want to mention here, highlighting that, the UW Long COVID Clinic has a very strong Patient Advisory Council who’s been very connected to this work as well.
Finally, our public awareness campaign, which I believe is scheduled to launch tomorrow. The goals for this campaign including… include raising awareness that long COVID is real.
Letting people with unexplained symptoms know they are not alone, and there might be an explanation.
And getting around people’s resistance to hearing about COVID and long COVID through sort of a catchy comic style, as you can see here.
There’s also a provider portion focused on listening to patient advocate stories, overcoming stigma and disbelief, which we already heard about earlier, and directing providers to learn more so they can better support folks who come to their clinic or practice.
The third component of our public awareness campaign is paying community-based organizations to recreate or change our campaign materials in ways or in languages that will resonate best with their audiences.
Focused especially on populations we believe are most at risk.
Based on the data we have access to.
This page includes several resources, and I believe, Sydney shared some additional resources in the chat. One to highlight here that I haven’t yet mentioned is our provider-facing podcast we developed called You Matter, Voices in Healthcare.
We have released two long COVID-focused episodes.
We also have print materials available for free to any provider in Washington state, including brochures and posters on various long COVID topics, such as long COVID and sleep, long COVID and depression, long COVID and diabetes.
With these resources, I did want to give a shout out and a thank you to the Pima County Health Department, who we adapted many of these resources from, and they have really led the way in building awareness of long COVID through a public health agency.
That’s it for me, thank you.
MONICA VIDAURRAZAGA:
Hello, everyone. I’m Monica Vidaurrazaga. I’m an infectious disease and internal medicine physician out of San Diego.
I work at a federally qualified health center here in California, and, really got in… started working here in 2020. So, for our… it’s a pretty big system throughout San Diego County. We provide care to about 200,000 patients each year over about 27 sites, and our patient population is mostly a medically underserved and racially and ethnically diverse community. About 84% are low income, and about 76% are racial and ethnic minorities.
I started working here in 2020, which obviously was a big year from the infectious disease space, and I really got into long COVID as an infectious disease consult. So we… my clinic site’s right in front of a hospital.
And we would frequently get discharges for ID follow-up after an acute COVID illness. And so, as of 2020, I was starting to see these patients who did not recover from their acute COVID illness.
And from there, our clinic system had a partnership with CDC, and there was a project which was focused on providing education to a group of providers here with our system for long COVID and other fatiguing illnesses.
So I was part of that, and pretty much… for about 3 years was, partaking in webinars and, smaller group sessions weekly for, long COVID.
And throughout this time, we were… being referred patients with long COVID in our clinic system, and trying to help them, and guide them, and… get them better, hopefully.
Since that program ended, I then took over more of a leadership role in it, and it is still ongoing, where we have monthly webinars, through the iECHO system, and then, also there’s monthly smaller group meetings, which are The idea is to have a smaller group of providers who can bring cases and discuss with panelists, who have been caring also for long COVID patients across the nation.
So, and then my one other role with Family Health Centers beyond this sort of project is we also have a research, team here, and part of my research with them is infectious disease-focused, but also post-infectious disease, so there’s another long COVID project that we are partaking in, and we’re a site for, that’s based out of Canada.
So, that’s kind of how I got into long COVID.
You know, it’s a tough act to follow all those great speakers, and I, you know, what everyone says really resonates, from the provider aspect.
I hear, you know, like Kathleen and Karyn were saying, and I’ve had many patients who have also shared similar stories, and… Just the challenges that everyone’s had.
From my perspective, from the clinician aspect.
I would say is, you know, the biggest change is almost, how you have to think as a clinician. You know, I think Kathleen mentioned we’re… trained to be evidence-based. So, you know, when we learn about diabetes and high blood pressure, we look at the guidelines, and we figure out, okay, this patient would, you know, this is first-line treatment, and then we do this, and this is how we monitor. And it’s very regimented, in a way, for a lot of the components, but long COVID isn’t that way. It can’t be that way. It’s a very heterogeneous condition. Everyone presents differently.
As mentioned, there’s not yet any FDA-approved medications, so we have to think more outside the box, we have to go more off-label, we have to be more willing to adapt and change our practice… the way that I sort of approach it is similar to… when I was in infectious disease fellowship, and there was a really rare case, and there aren’t guidelines on some of these, you know, parasitic conditions, or… bacterial conditions, because it’s just so rare. And so we’d have to look for case reports and literature review and see what was done before, and then kind of come up with a care plan.
My approach to long COVID is similar, but the main difference, and sort of the dichotomy of it, is it’s not rare. It’s something that we see all the time, and we just have to be able to, number one, recognize it, diagnose it.
Be familiar with it, as mentioned, and then sort of figure out the best approach for each individual patient.
So, I… I think that is sort of one of the biggest components on, sort of, the care.
Obviously, it’s really important to understand the patient needs and be able to develop a… treatment plan per patient. It’s not gonna be the same thing for everyone, and it… It’s also really important to make sure the patient’s on board with the plan, because they’re the ones who tell me.
What’s bothering them the most? what have they heard? What have they want to try? And, It really is a team effort, from my perspective, to find what would best work for them.
I also tend to do interventions step by step.
Because… at least some patients may be a little bit more sensitive to certain therapeutics or things like that.
So, for a couple reasons. Number one, if something works, that’s amazing, but we also want to know what works, rather than throwing everything at them at once. Similarly, if there’s any side effects, it’s a little bit easier to parse out what may be causing those side effects if, If, you know, if they’re having them.
A lot of times, too, we may start low, go slow. I know that’s a common thing, in a lot of long COVID patients as well.
And then I would say another sort of component to help with care is really try to meet the patient where they are. You know, it was already mentioned, but It… a lot of the patients may have fatigue and brain fog, and it can be a lot to ask, go do this, go see so-and-so, do this test, do that test, remember to get this lab draw, remember to do it this time of day. It’s a lot to handle for any patient, but specifically if you’re dealing with so many symptoms, and it’s just hard to manage. Karyn mentioned it was a full-time job for her, it’s tough.
So, we try and meet patients where they are in the best way we can. So, if that’s virtual visits or having, you know, the phlebotomist go to their homes to get labs, you know, try to do as much as we can from our end.
To not make anything worse, but hopefully facilitate their lives.
Similarly, you know, support them with You know, case management, in-home support services, workers’ accommodations, you know, anything like that.
That we can give so their lives can hopefully be a bit easier as we try and find what may work for them.
I think the other big thing that, from a healthcare provider, that I have realized, that I need to do, and we all need to do, obviously, is document really well.
And it’s more so for the support of the patient. So… I… my patients will often hear me say, like, listen, I’m not trying to give you more problems or add to your problem list, but we want to define what you’re feeling. So if they have long COVID and POTS, or long COVID and MCAS, we need to put a name to what they’re already experiencing, and make sure we’re Documenting it clearly to hopefully help, so if they need to do any of the rigorous disability process or anything further, it’s there in the chart, and it’s clear, the… Along, you know, with… care. It’s also been mentioned, but there are obviously a lot of barriers. I would say the… just the systemic limitations that was mentioned, so… the fact that, you know, we’re allotted a certain amount of time per patient visit in most clinic settings is challenging, going back to that program that I was part of, the idea was… for, you know, a group of us to be lawn care primary care providers.
And I do… I am the primary care provider for some of my long COVID patients, for… but for a lot of subset, or bigger subset, I’m almost a consult. I’m an internal consult, so I’m with the clinic system, so it makes it a bit easier than having to go elsewhere.
But a lot of it is because just the time that we’re allotted, and I… would be amazing to have more time with every single patient, but obviously there’s a lot that goes into that, and every clinic’s different.
But that is definitely a limitation, and a barrier.
Insurance is a tough one, too, so… You know, with no medications being… FDA approved for long COVID. Everything is pretty much that I try and prescribe is off-label, unless I can, you know, unless they have POTS and I can give a certain medication for that, or, you know, something of the sort.
And it’s… it’s hard. You know, I work… most of my patients have Medicaid or Medicare or are uninsured, and they don’t have the finances to be spending money on all these medications and things like that out of pocket.
So that… that’s a challenge, because as many prior authorizations as I do for Mestinon was mentioned earlier, you know, for Mestodon, I’m denied, and I’m denied, and then we’re trying to figure out, well, how can we get this patient with long COVID and dysautonomia to try it and make it make sense? And also not feel like they’re just throwing money away, because… they may not be able to work because of long COVID. So, it’s obviously a complex issue, and There’s no straightforward answer, unless they would just start approving all prescriptions, but hopefully with time, that will get there.
And then similarly with, like, DME or durable medical equipment, you know, some of our patients with post-exertional malaise, you know, if they have that physical therapy assessment at home, they may see, okay, the patient can go sit to stand, they can walk around.
But that’s not the reason why they may need an aid. They may need it, because when they go to the grocery store, they can’t stand in line to pay for their groceries. They’re going to need a sit, or, you know, things like that. It’s more sort of the… Other components of it that aren’t as standard as what is previously been seen or considered for some of these equipment.
I think another, barrier, which I thought Karyn mentioned nicely when she showed all those referrals and consulting physicians she’d seen, is… The challenges with that.
So, in our clinic system, we do have some specialty care within it, including, obviously, infectious disease, but there’s some other ones, but there are certain specialists that we don’t have in our system, and so that’s a referral outside the system. And just with the challenges of, number one, getting to a provider who may feel Comfortable and, knowledgeable about what to do, or, like, what we may or may not be looking for, plus what would work well for the patient in terms of location, so they’re not having to travel very far, and then getting, sort of, all the information back so we can all be on the same page isn’t as smooth? Is it… should be, or we’d want it to be. So I definitely find that can be a challenge as well.
And then, you know, I think something else that was already mentioned as well, but just to reiterate, is educating us, educating the providers. So, you know, I… we don’t know everything. I mean, that’s no secret. There’s no way we can know everything, you know? But it’s important that we learn and know where our gaps are, and… you know, for me, I’ve had a lot of education and learning over the past few years because of these programs that I’m part of. And, you know, things like this are amazing, so we can help educate, as many people as we can.
But I do think, you know, as, was mentioned with Heather in Washington State, you know, it needs to start sooner, you know, long COVID wasn’t around when I was in residency or med school or anything like that, but other post-infectious chronic conditions were, you know? you know, Lyme, EBV, you know, ME-CFS, all these things did exist pre-COVID, but I didn’t hear about it in medical school or, you know, throughout my training. So that’s something that needs to be started, I think, from the beginning. So when we get to our, you know, when we’re working.
It is something. Even if we don’t know all the ins and outs of it, you know, we know enough to recognize it and hopefully tie them in with a provider who feels a bit more comfortable.
And I think just the last thing I’m gonna say is I, once again, appreciate being here, I appreciate what everyone said, and I do think the lived experience is one of the best things that And the biggest things that I’ve learned from, both in terms of, you know, like, testimonials like we heard today, but also throughout the program that I’ve been partaking in, in every… every didactic, every webinar, we always have the lived experience represented, and I have learned so much, both from them, but also from my patients, and I really think If… We, as the collective providers, can just you know, make sure we’re listening, and, hearing and continue to learn from them, I think that’s gonna be our best success, because as much as I try to stay up-to-date on everything, you know, it’s hard, but our lived experience will have their ear to the ground, and they’re the ones who often say, hey, let’s try this, and I’ll look it up, and if there’s no big risk, then I’m all for it.
But, thanks for having me!
BOYEA:
Thank you, Dr. Vidaurrazaga. We really appreciate, your perspective and experiences, as well as all of our speakers, really for taking the time and sharing their insights and perspectives. We do have some time for Q&A, and I know we have some in the Q&A box, so we’re gonna start there.
So, Heather, I’m going to throw the first question to you. Somebody in the chat wrote, they want to know more about the funding you have available for all of this wonderful work that you are doing. So, could you talk a little bit more about that?
DRUMMOND:
Yes, absolutely, Alyssa, and recognize that’s… that often is the… the biggest and most challenging question. So thankfully, we continue to have, COVID funding from the CDC, which is being leveraged to support this work. It’s sort of the waning part of our COVID funding. It only goes through July of this year, so we are actively trying to explore how we can continue the work that we are doing, and we’ve also attempted to be intentional about building durable resources that can continue to support our communities.
Even after funding goes away. So these, education modules, these campaign materials, this clinical support tool, etc. All of those are… will continue to be available, even as funding goes away. We’re exploring what is, possible for ongoing surveillance, and as I mentioned, trying to make it as passive Or automatic as possible to minimize the burden in a resource-poor environment.
BOYEA:
Thank you so much. And I do believe you have a second question, that came in. Could you speak a little bit more to the development of the case definition for long COVID for syndromic surveillance?
DRUMMOND:
Yes, absolutely, great question. So, and… The case definition is, specific to the different data sources that I mentioned, but very broadly, we have sort of two, definitions that are leveraged based on the type of data within each data source.
The first is the narrow case definition for longed COVID, which requires that ICD-10 code, the diagnostic code, and, information within the various free text areas in the, in the patient record, around suspected long COVID. So, the primary use case for that is to really identify cases To understand prevalence.
And then for some of the other data systems that we are working to leverage, we are using a broader definition, which could include the diagnostic code or, specific fields within the free text, in the case record that could… that could indicate presence of long COVID through specific symptoms, and the primary use case for this is more around trend monitoring, so understanding the prevalence of those, types of symptoms over time. Are those increasing? Is that potentially connected to, Long COVID, surveillance and prevalence across Washington state.
BOYEA:
Thank you so much, Heather.
Alright, so we do have a few more in the chat. So the first is knowing the impact of long COVID, should public health be doing more to prevent long COVID like we did during the pandemic? So, masking, isolation when sick, etc.
And I’ll… I’ll let anybody who is interested in answering that.
BISHOF:
I’ll take a stab. Hi.
Yes, absolutely. The only way to prevent long COVID is to prevent COVID-19 infection.
We know that through various research that reinfections increase the incidence of long COVID. The data coming out of Recover that used three different EHR databases show that the prevalence has continued to increase over time as well. I think that there… because of the messaging that the pandemic has ended, which is not necessarily true. People are still getting infected every day. New cases and reinfections, again, all resulting in increased prevalence.
There’s this misconception that… that things are over, that the risk is gone, that if you had COVID before, and you ended up recovering, or you didn’t develop long COVID, that you’re in the clear if you get it again. And we just… we know that that’s not accurate. So, a lot of what you heard everybody talking about here today, which is education, is really the foundation for everything else that needs to happen. For prevention, for advancing clinical care, for advancing research, and public health policy and the resources needed to respond at whole. So everything related to long COVID starts with preventing COVID and addressing COVID-19.
BANKS:
And just to add to that, thank you, Karyn, you know.
the incidence hasn’t changed since 2020. It’s been the same at 6%. And so we do have the same number of cases since 2020. I think there’s a false narrative, as Karyn was saying, that… that we don’t have long COVID anymore, and that’s just not true.
DRUMMOND:
I was gonna add one more thing, around, sort of, the role of public health and, supporting education and messaging and prevention resources, a lot of the work that we are building to support long COVID efforts sort of stems from work we did to support COVID-19 vaccine efforts, and recognizing, vaccination is a great… something we can leverage to, decrease severity of disease and, decrease risk of acquiring long COVID. So, another connection point in public health programming to continue to encourage, COVID-19 immunization.
BOYEA:
Wonderful, thank you all. We have a few more, so first, do those speakers have any suggestions for health departments to connect with patient groups or long COVID providers?
BISHOF:
Yeah, so, I… as I plugged into the chat, we… I plugged in our public health resources page, which I think is really a valuable resource for everybody that is on this webinar. We have both our comprehensive guide to long COVID, which goes through everything you can possibly think of from the long COVID patient perspective of what people need to know, but also addresses clinicians, researchers, and others.
And we expanded on that this last fall by also publishing a guide for cross-sector stakeholders to respond to long COVID, and it goes over how every sector has a responsibility and how they go about acting upon that. In terms of connecting with the patient community, as I said before, C19 Lab has a chapter in every single state. We have been involved in almost every, nearly every federal effort and many state efforts that You guys have heard about are either constituents or members have been parts of some of these.
And we are currently in the process of building out, as I kind of briefly went over as well, programs that we could partner on at the state level between patients and departments of health, and bringing in other entities. So, we would love to hear from you, we would love to partner with you, we would love to advance education and solutions at the state level.
And, the local levels as well. And, I think that reaching out to the patient community is invaluable. Again, we have to be part of the solutions, and even if you end up connecting with a long COVID organization who might not, be within your niche, we know the others who are, so don’t be afraid to reach out. We want to partner with you guys, and we want to advance things forward.
BOYEA:
Thank you so much, Karyn, I really appreciate that.
Anybody else have any thoughts? All right. We have a couple of more questions in the chat. So, this one is for Dr. Vita Razka. On the clinical side, is long COVID considered a diagnosis of exclusion at this point? We’ve… they’ve shared a lengthy list of alternative diagnoses. Is it typical for those to be rolled out before diagnosing long COVID?
VIDAURRAZAGA:
Yeah, it’s a great question.
My perspective is it’s changed over the years. I think initially, when the initial long COVID diagnoses came out, it, you know, the wording was, you know, if we can’t explain it by any other diagnosis.
I… don’t go with that anymore. I think for most patients, it’s long COVID, and let’s see if they have any other, like, co-occurring diagnoses or anything that can overlap.
So… For me, no. Yes, do the workup, make sure they don’t have sleep apnea, but definitely, I believe you can diagnose it without ruling out everything and making the patient go do 5,000 tests.
BOYEA:
Thank you.
All right, the next question is, setting aside access to care, does anyone have a sense of why there’s a higher incidence in rural communities? Yes, please.
BISHOF:
He’s good.
I mean, access to care in rural communities is a downside, even outside of long COVID itself, right? We have limited access to facilities, there are less clinicians at these facilities, there is less funding for these facilities, and it is even harder, as, you know, we heard patients struggle to just get to doctor’s appointments that may be even locally for them, and it can exacerbate their health for days and weeks and even months afterwards.
when you’re in a rural community and you may have a transport time of getting an hour, an hour and a half to a facility to go do all-day testing and come home, that is a lot on a patient, and sometimes it turns patients off. Sometimes patients say, you know, I’m going to make myself sicker just going for this test, but at the same time, not doing that test can cost them losing disability, not getting work or school accommodations, and all these things. So patients are really… kind of stuck between this rock and a hard place, and when it comes to rural care overall, rural care needs a massive investment in terms of infrastructure and support and bringing more, even, mobile kind of clinics, right? There was a previous program that was out in Arizona where they had a mobile long COVID clinic that actually went out to communities in rural areas and met with patients, and… and did assessments and things like that. Integrating these types of things into rural communities can actually help that population.
BOYEA:
Thank you so much, Karyn.
Alright, I’m gonna check the chat one more time. I think we’ve answered most of the chat questions.
I know there was one, that Heather had answered via text, or chat, which is basically looking for, the module that’s embedded within the UW medical curriculum and resources, and wanting to know, more about that, And she provided, that they’ll be shareable, and that you can contact Power of Providers at doh.wa.gov.
Alright.
We do have one more, quick question, and then I have one question I’d like to ask all of the panelists, to wrap up the webinar today. The question is, do we have any evidence that the vaccine can prevent long COVID?
VIDAURRAZAGA:
Yeah, I think there’s some good data out there to show patients that were vaccinated, prior to contracting COVID have a lower rate of obtaining long COVID. Obviously, not 100% effective, as we heard today, but there is data to support that.
BOYEA:
Fantastic. Okay, so I know we are coming up on time, and I’d like to ask one final question before we wrap up. And I’d like, you know, everybody to, you know, share their one action, or one Next step that they hope that either participants on the webinar today, or healthcare systems, or policy makers, or public health leaders will take as a result of conversations like these.
So what is one hope, or one action, or one takeaway you hope that folks will take from conversations like these?
BANKS:
I’d just like to say, again, thank you for having us here today, and thanks for everyone for joining. I’d really like to see people go back to your professional organizations and talk with the leaders about making sure long COVID is a priority. I’m thinking specifically, like, the AMA and other clinical Professional organizations, because those are… the guide points for what physicians actually practice, or what clinicians actually practice, depending on, the different, specialties. So, please go back, and talk about it, not just within your own circles, but in a broader capacity as well.
BISHOF:
Yeah, I mean, I would echo, what Kathleen just said in terms of bringing it back to your medical societies, your institutes, your departments of health, and advocating for why these things are a necessity. A lot of what we spoke about today are a lot of data and resources that are available and out there that many of us just don’t know of and aren’t aware of. When we think about responding to long COVID, we go, great, where do we start? start with the patient community. Start with us and bring us into the conversation to elevate what resources are needed, to elevate the gaps, to build these programs. I think what’s also important is all of the entities that are here and beyond acting independently and not having to be mandated to act to respond to long COVID. And again, that goes back to being an advocate within your own agencies, and facilities, and thinking big and long-term.
So a lot of, again, what we talked about at UW, the resources that they’re developing, even though they use funding, if they lose funding, they still have resources that could be used longitudinally, right? Their clinician education program and things like that. So when you guys are all thinking about how to respond to long COVID, again, it’s involving the patient community, thinking longitudinally, acting independent, and not having to wait to be mandated to act on long COVID, and recognizing via the data and the patient stories that this is a massive public health crisis, an ongoing public health crisis, and we are going to have to respond to it one way or another, whether we do it willingly, or whether we end up being forced to because of the systemic impacts on society and our healthcare system. So, what we really need is that action, that partnership, and the self-willingness and self-education to learn and be able to advocate within our entities to move the long COVID action forward.
VIDAURRAZAGA:
I completely agree. Yeah, and I think I would just say, from the provider’s standpoint, speaking to patients, you know, if… if you’re still trying to find that provider, like, keep looking. I tell my own patients who see me, feel free to get a second opinion anytime. You need to feel comfortable with who you are seeing, and you need to find a good fit. I know it can be a challenge at times, and you may have certain limitations, but that would be one takeaway I’d want to Make sure everyone is aware.
DRUMMOND:
One takeaway I’ll share, which, Monica, you already mentioned, is recognizing that, you know, long COVID is not the only infection-associated chronic condition, and we, as public health.
Have an imperative to, build long-term infrastructure to support this disease and the individuals who are affected by it, so… which can include provider education, stigma reduction, access to treatment and care, all of those things. I think there’s… sort of an expectation or desire that COVID and long COVID is a pandemic problem, and we’ve moved on from the pandemic, but those things are here to stay, and so we really need to be thoughtful about ensuring we have Infrastructure and funding to, work to address this very important public health issue.
BOYEA:
Absolutely. Well, thank you all so, so much for joining us today. Thank you to our attendees, thank you to our speakers. I think we’ve heard it loud and clear. Long COVID is not a single story. It’s a collection of lived experiences and clinical insights and ongoing, evolving research.
And what we’ve really highlighted today is both the complexity and the urgency that we need to continue to listen. We need to continue to learn, and we need to continue to work together to improve care and outcomes for those living with long COVID.
So, with that, I want to encourage you to check out the numerous resources that were dropped in the chat. We will be posting a recording of this, webinar on our ASTHO Long COVID webpage, and we really encourage you to fill out the evaluation survey.
Let us know what you thought about the webinar. We’re always looking for ways to improve. So again, thank you all so much for your time today, and we hope you have a great rest of your day.