Last month, Dr. Ian Simon became the inaugural director of the U.S. Office of Long Covid Research and Practice, an office under the Department of Health and Human Services that aims to coordinate Long Covid efforts across the federal government. The HHS launched this office last summer after first announcing plans for it in a research action plan published in August 2022, contributing to criticism of the government’s slow pace in addressing Long Covid.
Prior to joining the office, Dr. Simon worked in other federal government roles for over a decade after starting his career researching HIV/AIDS. Most recently, he was the Assistant Director for Health Strategy and Biopreparedness at the White House Office of Science and Technology Policy, where he worked to make connections both within and outside of federal agencies.
Betsy Ladyzhets spoke to Dr. Simon about his prior experience, his work at the Long Covid office so far, and his plans for leveraging federal resources to advance research and support for people with Long Covid. As limited time was available for the interview, the office also sent responses to some questions over email and shared resources that may be helpful for readers. This interview has been lightly edited and condensed for clarity.
Betsy Ladyzhets: Dr. Simon, thank you for taking the time for this. I wanted to start by asking how you came into this role — why are you are interested in leading the Long Covid office, and how has your previous work helped prepare you for this role?
Dr. Ian Simon: I’m glad we’re doing this [interview]. I came into this work really from the standpoint of both being really excited by the opportunity and honestly daunted by the challenge.
Going back a bit, when I was a young scientist, I was originally interested in HIV. I was interested in how a virus could hijack the body, live inside our cells, and wreak havoc on our immune systems. I was equally fascinated by how, in the early days of the HIV epidemic, folks were faced with this “mysterious” illness. They were looking at what, seemingly, was a disparate set of clinical manifestations, they were working diligently together, they didn’t have a ton of support at the beginning. [The research] was all about piecing together the origins of the disease, developing standards of care in the clinic that prioritize the humanity of patients, and then eventually getting to the point where we had the triple cocktail [of antiviral drugs] and attempts to create vaccines.
I was fascinated by that, and when I got to grad school, that’s what I wanted to do. I started working in a laboratory that was focusing on developing vaccines for HIV and for other diseases, because I was thinking this is one of the most important medical research efforts of our time. Turned out [that] some of the work that I did then, directly played into what we might be seeing now [with Long Covid]. Back then, I was looking at how viruses, and specifically RNA viruses and RNA virus particles, can live in tissues for months after an infection was seemingly cleared…
What we have at this moment is kind of a repeat of the early 80s, but also very different. We have serious illnesses, we have people working on them, but what we have now that we didn’t [in the 80s] was this keen awareness, when the entire world is hit with a pandemic all at once and unfortunately, millions of people are feeling what it’s like to have a chronic condition after a mass infection event.
At this point, I think there’s an opportunity to take what we have learned, from piecing things together over the years around other infection-associated chronic conditions — and take what we know about this one particular virus [SARS-CoV-2] — and marshal everything that the federal government has at its fingertips, its capabilities to do what we did with the HIV epidemic in the 80s, but do it on overdrive. Let’s get to understanding the origins of the mysterious conditions faster. Let’s put patients at the center of how we think about research, how we think about clinical care, and let’s get to preventive measures. Let’s get to treatments faster. Because now we all have this very keen awareness focused on this moment in time.
So that’s why I was interested in taking this position. I feel like I’ve been prepared from both a scientific background and been prepared [from prior federal positions]. For instance, my last position at the Office of Science and Technology Policy, that office is oriented around marshaling the whole of government to do something. In that case, it’s marshaling the government to take the science and technology that it has at its fingertips and orienting [that science] towards particular priorities. That’s where I learned how to look across different agencies, to identify gaps, to bring folks together towards a common goal. With this opportunity [at the Office of Long Covid Research and Practice], I feel like the goal, my experiences, it was almost a no-brainer to take this position.
BL: Definitely, I can see how your work and past viral persistence-type research could be very relevant. What have you been working on in the last few weeks since you formally started this position? And how are you foreseeing both working with patient advocates and also the different federal initiatives that are have already started up in the last couple of years around Long Covid?
IS: In the past few weeks, I’ve been learning about all of the federal initiatives, I’ve been learning about all the patient advocacy groups, meeting with many of them. The last few weeks have been really about understanding the space, understanding what patients are going through, understanding what research efforts are underway both inside the government and outside the government, and understanding the fight around understanding infection-associated chronic conditions, which is not new.
Part of my first few weeks has been to understand exactly what these other [infection-associated chronic disease] communities have already figured out, what we need to apply directly from the start. Because if I came into this position thinking, we’re starting from scratch or we’re going to reinvent the wheel, that’s helping no one. It’s, frankly, a waste of time and resources. As I’ve been meeting with folks inside the government, outside the government, some industry stakeholders, [the question is] what can we do not just with federal dollars, but also what can we do to leverage the work and activities going on outside the government.
The ways in which I think I’ll be oriented going forward are a regular cadence [of meetings]. Not just, I’m introduced to this one group, but a regular cadence of staying in touch, having good conduits by which we can communicate back and forth. Whether it’s patient groups, whether it’s the NIH, whether it’s the White House — there will be regular check-ins, not a one-off with one announcement but constant communication. So that not only we can know what’s going on, but we can drive towards something we see as a shared vision. And that comes with constant contact.
There’s an opportunity… to marshal everything that the federal government has at its fingertips, its capabilities to do what we did with the HIV epidemic in the 80s, but do it on overdrive.
Dr. Ian Simon
BL: You mentioned leveraging resources. And I know from patient advocates, right now a huge ask is more federal funding or more resources for, particularly, clinical trials. Like, you might be familiar with the Long Covid Moonshot initiative, which is one example of this ask. So I’m curious, from your work so far, how you see the office helping to leverage potential funding or maybe manage relationships with, say, pharmaceutical companies that might be working on drugs. What do you see the office’s role in advancing clinical trials?
IS: Our role as the coordinator of the government’s efforts really puts us at the center of doing just that: making sure that we are connecting folks from outside the government to inside the government, and that we’re connecting industry to what might be happening with patient organizations, connecting research groups to clinical care groups. I see that [connection] as central to our role.
All of this work is oriented towards some topline goals. The topline goals are, let’s understand the origins of Long Covid and other infection-associated chronic conditions. How do we understand that? Yes, research dollars. But also, having really strong feedback loops, trying something [a treatment], understanding if it worked, didn’t work. If it worked, great, how do we improve on that? And if it didn’t, what do we address next? That means, yes, clinical trials, but also adapting clinical care to the latest we understand in terms of what treatments might work. While we’re waiting for a particular drug [to be tested], there might be other treatments that actually help patients now, and [our role] is connecting all of that work together.
You probably saw the announcement where RECOVER gathered another $515 million for their clinical trials, not just this year, but for future years. Part of our job is to make sure that we can have a sustainable source of funds, for RECOVER and for other research efforts throughout the federal government. The Agency for Healthcare Research and Quality also has a program where they have $45 million —
BL: Yeah, I’ve written about that a bit.
IS: Exactly. There are a number of these efforts. The CDC also has efforts to speak to clinicians, to make sure that they are equipped with the latest information on how to treat Long Covid patients, how to identify them, how to get them into care as quickly as possible. All that together is our charge.
BL: That’s great to hear about the focus on future funding, because I know people are always asking about that. I also wanted to ask about the education and outreach pieces of this, both within government and going out to clinicians who are caring for people with Long Covid. One thing specifically that a couple of readers asked about was, with the Social Security Administration, a lot of people with Long Covid, as you probably know, are applying for disability benefits and having trouble with those applications. And similarly, people are asking for more guidance for insurance companies that are rejecting [coverage of] off-label treatments and stuff like that. So I’m curious what the office’s role might be with doing that sort of outreach.
IS: Great question, and I’m glad you asked it. Research efforts, like RECOVER, [get] a lot of attention, and what doesn’t get attention is exactly what you’re talking about, the supports and services that patients with Long Covid need. One of my priorities coming in is to make sure that we are working with those agencies, like the Social Security Administration. They have already been a great partner in some of the government’s Long Covid coordination council meetings and workgroups, and it’s about taking the great work that’s already been started and cranking that up. They might have ways for people to access [support], or they might have mechanisms in place, but maybe this isn’t well-known or well-advertised. Maybe there are some simple ways that we can connect the supports and services that might exist but might be hidden, might be in the shadows, might be underneath a bunch of red tape, and making sure that they are fully accessible to patients out there.
BL: What opportunities do you see, as well, for new supports or new programs that might be specific to Long Covid or other infection-associated conditions, as people are dealing with losing their jobs and other kinds of financial hardships that can come with this disease?
IS: As I mentioned, we have a Long Covid coordination council. And under that is a working group on service eligibility and workers’ rights. We are, right now, working to set up some priorities for that working group. We’ve got some great partnerships with the Department of Labor and the Social Security Administration. What I’m hopeful for, and would love to see as we crank up our work in 2024, is some really smart, innovative ideas coming from that workgroup as to how we can do exactly what you just talked about.
BL: Gotcha, that’s good to hear. It seems like we might be out of time. Is there anything else you would want readers to know, just about what you’re excited about working on this year?
IS: What we really see is that our office is going to have a daunting challenge ahead of us, to marshal the whole of government — not just for research, but for those other pieces you talked about. What I’m really excited about is, yes, supporting research, making sure it has some robust and long-lasting support, but also being able to get our clinicians as up-to-date as possible on what they can do to help Long Covid patients, to work on the supports and services, and to get the word out to the public, not just that Long Covid is real — because Long Covid is real — but that other infection-associated chronic conditions, as well as Long Covid, have been here and they need our attention.
This is not going to go away just because people feel like the pandemic went away. This will be with us for a while. And we really need to tackle this set of health impacts now. So that, God forbid, if we do have another epidemic, we are ready to handle it and we’ve actually figured out ways to mitigate the long-term impacts.
Additional responses and resources from the Office of Long Covid Research and Practice:
Dr. Simon mentioned meeting with Long Covid advocates during his first few weeks in this position. I’m also curious about the progress for the HHS Advisory Committee on Long Covid — are there any updates on that committee that you could share?
In November, HHS announced the launch of the Secretary’s Advisory Committee on Long COVID. We received almost 150 nominations for well-qualified and diverse applicants from across the country with backgrounds in healthcare, research, and lived experience to name a few. We are in the process of reviewing them now.
How do you foresee that the OLC will work with different federal initiatives on Long Covid, such as NIH RECOVER, the AHRQ grants for clinics, and the CURE-ID surveys, as well as academic and private research initiatives?
The Office of Long COVID Research and Practice works with NIH, AHRQ, FDA, and hundreds of other federal employees dedicated to helping people who have Long COVID today as well as finding solutions for tomorrow. We think about our coordination with these agencies through the lens of four domains: conducting research, supporting the development and sharing of clinical practice guidelines, educating the public, and providing supports and services to those living with Long COVID and those that care for them.
What do you foresee as the most promising areas of research related to potential Long Covid treatments and prevention measures (eg. next-generation vaccines), and how will the OLC support this research?
Building on research and clinical findings from other infection-associated chronic conditions has the potential to help patients quickly. For example, knowing how Long COVID patients respond to treatments that have been used for ME/CFS or Fibromyalgia will help guide clinicians in how to help patients with Long COVID.
How OLC supports this research: The Office of Long COVID Research and Practice supports these research efforts by coordinating the work of multiple agencies, to make sure the research needs identified in the National Research Action Plan are accomplished.
How will the OLC include vaccine-induced long haulers in research and treatment? This is a known cause/contributor to Long Covid that has been acknowledged and studied by some leading researchers.
Understanding adverse events following vaccination is important. If someone experiences an adverse event they should report it to the Vaccine Adverse Event Reporting System (VAERS).
How might the office support better protection for people with Long Covid seeking to avoid reinfection, particularly in medical settings (where masks are often no longer required)?
The best protection against Long COVID is to avoid getting COVID-19. For people who are eligible, the CDC recommends staying up to date on COVID-19 vaccination, along with improving ventilation, getting tested for COVID-19 if needed, and seeking treatment for COVID-19 if eligible. Additional preventative measures include avoiding close contact with people who have a confirmed or suspected COVID-19 illness and washing hands or using alcohol-based hand sanitizer.
How does your office plan to integrate years of research done into similar (yet under-studied) post-viral illnesses, such as ME/CFS or Long Lyme disease, into its work on Long Covid? (Dr. Simon did mention this a bit in the interview, but I was wondering if there are specific plans or initiatives in this area that you may be able to mention.)
The National Research Action Plan on Long COVID outlines the goals of the Long COVID federal research portfolio. This research has been ongoing since 2020. We know that infection-associated chronic illness is not new and RECOVER builds upon decades of substantial research on infection-associated chronic conditions and other diseases that may have infectious origins, including dysautonomia and ME/CFS. We are also hopeful that RECOVER’s findings will impact the infection-associated chronic conditions community as well.
Does, or will, HHS have resources (website, phone line, etc.) to help those with Long Covid find treatment and/or research trials in their area?
If someone believes they have Long COVID they should talk to their doctor to help them find the care and support they need as soon as possible. CDC offers a few tools for patients to help them talk about Long COVID with their doctor and prepare for their visit. We’re happy to share those with you. To find clinical trials I would direct you to clincialtrials.gov.
- Patient Tips: Healthcare Provider Appointments for Long COVID
- Healthcare Appointment Checklist for Post-COVID Conditions
- The Disability Information and Access Line (DIAL) helps people with disabilities get connected to information about local community resources that support independent living.
How might the OLC, perhaps in collaboration with other federal offices/agencies, work with international governments to advance research and treatment options for Long Covid at a global scale?
The Office of Long COVID has met with several other countries who are responding to Long COVID and discussed their research efforts. By far, the United States’ investments in RECOVER has made it the world’s largest and most comprehensive Long COVID study.
Overall, what are your top priority research and policy goals for the office in the next year, next five years?
The goals of the Office of Long COVID is to reduce the likelihood that someone will develop Long COVID, and to help the people who are living with Long COVID today.
Additional resources for those living with Long Covid as a disability:
- The Disability Information and Access Line (DIAL) can answer questions about civil rights for people with disabilities including Long COVID and connect people with needed services.
- Workers with Long COVID-19: You May Be Entitled to Workplace Accommodations
- Supporting Employees with Long COVID: A Guide for Employers
- EEOC Enforcement Guidance on Reasonable Accommodation and Undue Hardship under the ADA
- A guide you can share with your doctor on SSI/SSDI: Long COVID: A Guide for Health Professionals on Providing Medical Evidence for Social Security Disability Claims (ssa.gov)
- A guide you can share with a case worker or someone else assisting you with your SSI/SSDI application: Developing SSI/SSDI Applications for Individuals with Long COVID
- Resources on how to get help with your VA benefits application
- Disability Insurance benefits between employers and employees
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