COVID-19 Data Dispatch

Category: Long COVID

  • Looking ahead to the big COVID-19 stories of 2023

    Looking ahead to the big COVID-19 stories of 2023

    The number of sites reporting to the National Wastewater Surveillance System (see the black line) has declined in recent weeks. This may be a worrying trend going into 2023.

    It’s the fourth year of the pandemic. I’ve written this statement in a few pitches and planning documents recently, and was struck by how it feels simultaneously unbelievable—wasn’t March 2020, like, yesterday?—and not believable enough—haven’t we been doing this pandemic thing for an eternity already?

    As someone who’s been reporting on COVID-19 since the beginning, a new year is a good opportunity to parse out that feels-like-eternity. So this week, I reflected on the major trends and topics I hope to cover in 2023—both building on my work from prior years and taking it in new directions.

    (Note: I actually planned to do this post last week, but then XBB.1.5 took higher priority. Hence its arrival two weeks into the new year.)

    Expansions of wastewater, and other new forms of disease surveillance

    As 2022 brought on the decline of large-scale PCR testing, wastewater surveillance has proven itself as a way to more accurately track COVID-19 at the population level—even as some health departments remain wary of its utility. We also saw the technology’s use for tracking monkeypox, polio, and other conditions: the WastewaterSCAN project, for example, now reports on six different diseases.

    This year, I expect that wastewater researchers and public agencies will continue expanding their use of this surveillance technology. That will likely mean more diseases as well as more specific testing locations, in addition to entire sewersheds. For example, we’re already seeing wastewater testing on airplanes. I’m also interested in following other, newer methods for tracking diseases, such as air quality monitors and wearable devices.

    At the same time, these surveillance technologies will continue to face challenges around standardization and public buy-in. The CDC’s big contract with Biobot expires this month, and I’ve already noticed a decline in sites with recent data on the agency’s dashboard—will CDC officials and local agencies step in to fill gaps, or will wastewater testing become even more sporadic?

    New variants, and how we track them

    For scientists who track the coronavirus’ continued evolution, 2022 was the year of Omicron. We didn’t see all-new virus lineages sweeping the world; instead, Omicron just kept mutating, and mutating, and mutating. It seems likely that this pattern will continue in 2023, but experts need to continue watching the mutation landscape and preparing for anything truly concerning.

    With declining PCR testing, public agencies and companies that track variants have fewer samples to sequence. (This led to challenges for the CDC team tracking XBB.1.5 over the holidays.) As a result, I believe 2023 will see increased creativity in how we keep an eye on these variants—whether that’s sequencing wastewater samples, taking samples directly from healthcare settings, increased focus on travel surveillance, or other methods.

    Public health experts—and journalists like myself—also need to rethink how we communicate about variants. It’s no longer true that every new, somewhat-more-contagious variant warrants alarm bells: variants can take off in some countries or regions while having relatively little impact in others, thanks to differences in prior immunity, seasonality, behavior, etc. But new variants still contribute to continued reinfections, severe symptoms, Long COVID, and other impacts of COVID-19. Grid’s Jonathan Lambert recently wrote a helpful article exploring these communication challenges.

    Long COVID and related chronic diseases

    As regular readers likely know, Long COVID has been an increased topic of interest for me over the last two years. I’ve covered everything from disability benefits to mental health challenges, and am now leading a major project at MuckRock that will focus on government accountability for the Long COVID crisis.

    Long COVID is the epidemic following the pandemic. Millions of Americans are disabled by this condition, whether they’ve been pushed out of work or are managing milder lingering symptoms. Some people are approaching their three-year anniversary of first getting sick, yet they’ve received a fraction of the government response that acute COVID-19 got. Major research projects are going in the wrong directions, while major media publications often publish articles with incorrect science.

    For me, seeing poor Long COVID coverage elsewhere is great motivation to continue reporting on this topic myself, at MuckRock and other outlets. I’m also planning to spend more time reading about (and hopefully covering) other chronic diseases that are co-diagnosed with Long COVID, like ME/CFS and dysautonomia.

    Ending the federal public health emergency.

    Last year, we saw many state and local health agencies transition from treating COVID-19 as a health emergency to treating it as an endemic disease, like the many others that they respond to on a routine basis. This transition often accompanied changes in data reporting, such as shifts from daily to weekly COVID-19 updates.

    This year, the federal government will likely do the same thing. POLITICO reported this week that the Biden administration is renewing the federal public health emergency in January, but will likely allow it to expire in the spring or summer. The Department of Health and Human Services has committed to telling state leaders about this expiration 60 days before it happens.

    I previously wrote about what the end of the federal emergency could mean for COVID-19 data: changes will include less authority for the CDC, less funding for state and local health departments, and vaccines and treatments controlled by private markets rather than the federal government. I anticipate following up on this reporting when the emergency actually ends.

    Transforming the U.S. public health system

    Finally, I intend to follow how public health agencies learn from—or fail to learn from—the pandemic. COVID-19 exposed so many cracks in America’s public health system, from out-of-date electronic records systems to communication and trust issues. The pandemic should be a wakeup call for agencies to get their act together, before a new crisis hits.

    But will that actually happen? Rachel Cohrs has a great piece in STAT this week about the challenges that systemic public health reform faces, including a lack of funding from Congress and disagreements among experts on what changes are necessary. Still, the window for change is open right now, and it may not be at this point in 2024.

    More federal data

  • New CDC report vastly underestimates deaths with Long COVID

    New CDC report vastly underestimates deaths with Long COVID

    The 3,500 Long COVID-related deaths identified by the CDC’s review of death certificates are likely a significant undercount of mortality caused by this condition, experts say. Chart by Karen Wang; see the interactive version on MuckRock.

    On Wednesday, the CDC’s National Center for Health Statistics (NHCS) released a major report on deaths from Long COVID. To identify a small (but significant) number of deaths, NCHS researchers searched through the text of death certificates for Long COVID-related terms. Their study demonstrates how bad our current health data systems are at capturing the results of chronic disease.

    My colleagues and I at MuckRock did a similar analysis to the CDC’s, searching death certificate data that we received through public records requests and partnerships in Minnesota, New Mexico, and counties in California and Illinois. You can read our full story here and explore the death certificate data we analyzed on GitHub.

    Here are the main findings from both analyses:

    • The CDC study is an important milestone in recognizing the reality of Long COVID: this is a serious, chronic disease that can lead to death for some patients. It’s not just an outcome of acute COVID-19.
    • From its national death certificate search, NCHS identified 3,544 deaths with Long COVID as a cause or contributing factor. This is almost certainly a major undercount, experts told me (and told other reporters who wrote about the study.)
    • This number is an undercount because we’re essentially seeing two poor-quality data systems intersect. Long COVID is undercounted in clinical settings because we lack standard diagnostic tools and widespread medical education about it—most doctors wouldn’t think to put it on a death certificate as a result. And the U.S.’s death investigation system is uneven and under-resourced, leading to inconsistencies in tracking even well-known medical conditions.
    • On top of these problems, when Long COVID is diagnosed, it tends to be among people who had severe cases of acute COVID-19 followed by difficulty recovering, experts told me. David Putrino and Ziyad Al-Aly, two leading Long COVID researchers, both pointed to the NCHS’s trend towards identifying Long COVID deaths among older adults (over age 75) as an example of this pattern in action, since this group is at higher risk for more severe acute symptoms.
    • The NCHS count of deaths thus misses Long COVID patients with symptoms similar to myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), which often arises after a milder initial case. It also misses people who have vascular impacts from a COVID-19 case, like a premature heart attack or stroke months after infection—something Al-Aly and his team have studied in depth. And, crucially, the NCHS count misses people who died from suicide, after suffering from severe mental health consequences of Long COVID.
    • While the NCHS count of Long COVID deaths is far too low to be accurate, the researchers did find more deaths as the pandemic went on—with the highest number in February 2022, following the first Omicron surge. This pattern could suggest increased recognition of Long COVID among the medical community.
    • The NCHS primarily identified Long COVID deaths among white people, even though acute COVID-19 has disproportionately impacted people of color in the U.S. Experts say this mismatch could reflect gaps in access to a diagnosis and care for Long COVID: if white people are more likely to be seen by a doctor who can accurately diagnose them, they will be overrepresented in Long COVID datasets. Putrino called this “a health disparity on top of a health disparity.”
    • MuckRock’s analysis of death certificate data in select states similarly found that most deaths labeled as Long COVID were among seniors and white people. The trends varied by state, though, reflecting differences in populations and in local death reporting systems. For example in New Mexico, which has a statewide medical examiner’s office (rather than a looser system of county coroners), three-fourths of the Long COVID deaths were among Hispanic or Indigenous Americans.
    • Our story also includes details about the RECOVER initiative’s autopsy study, which aims to use extensive postmortem testing on people who might have died from acute COVID-19 or Long COVID to identify biological patterns. Like the rest of RECOVER, this study is moving slowly and facing logistical challenges: about 85 patients have been enrolled so far, an investigator at New York University said.

    Overall, the NCHS study suggests an urgent need for more medical education about Long COVID, especially as the CDC works to implement a new death code specific to this chronic condition. We also need broader outreach about the consequences of Long COVID. To quote from the story:

    “Institutions like the CDC should do more to educate people about the long-term problems that could follow a COVID-19 case, said Hannah Davis, the patient researcher. “We need public warnings about risks of heart attack, stroke and other clotting conditions, especially in the first few months after COVID-19 infection,” she said, along with warnings about potential links to conditions like diabetes, Alzheimer’s and cancer.

    And we need other methods of studying Long COVID outcomes that don’t rely on a deeply flawed death investigation system. These could include studies of excess mortality following COVID-19 cases, Long COVID patient registries that monitor people long-term, and collaborations with patient groups to track suicides.

    For any reporters and editors who may be interested, MuckRock’s story is free for other outlets to republish.

    More Long COVID reporting

  • The future of tracking Long COVID

    The future of tracking Long COVID

    Hispanic or Latino New Yorkers were more likely to report Long COVID symptoms than other demographic groups, in a 2021 survey by the city health department. Chart via THE CITY.

    I had two new articles about Long COVID published this week:

    • This story in Science News describes how researchers are working to fill gaps in Long COVID data, largely by collaborating with patients and across different areas of medicine.
    • This story in Gothamist/WNYC describes three public Long COVID clinics run by New York City Health + Hospitals, which offer a range of care to New Yorkers with the condition but fall short of all the specialties needed for comprehensive treatment.

    The reporting process for both stories gave me a lot to think about, in considering potential improvements in recording who has Long COVID and how this chronic disease impacts people.

    And we have a lot of room for improvement. There are plenty of reasons why Long COVID research and data collection are currently difficult, ranging from a lack of consistency in how the condition is diagnosed to historical underfunding for similar chronic diseases like myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and dysautonomia. For more details, see this post I wrote in May.

    The U.S. scientific and medical systems also made specific mistakes early in the pandemic that contributed to our current data gaps, including the dearth of PCR testing—leading many current long-haulers to not have positive test results from their initial infections—and early refusals by many doctors to believe patients’ prolonged symptoms had resulted from the coronavirus. Most medical schools do not spend much time training new doctors to recognize complex, chronic diseases, leaving them unprepared to tackle Long COVID.

    But these problems can be addressed—especially if doctors and researchers are willing to step outside their specific fields to collaborate with each other and with patients. Here are a few specific recommendations that I learned about in reporting my stories for Science News and Gothamist/WNYC.

    Listen to and collaborate with patients.

    “Patients know the right questions to ask to properly document their experience,” Lisa McCorkell, one of the founders of the Patient-Led Research Collaborative (PLRC), told me in an email interview for my story.

    In fact, a survey study by PLRC in which patient-researchers asked other long-haulers to describe their symptoms is considered one of the most comprehensive accounts of this condition. Other researchers have used this list of symptoms in designing their own patient surveys.

    Surveys are one important mechanism of compiling patient experiences, as they can capture information that does not make it into medical records. (Common Long COVID symptoms like post-exertional malaise often are not well-captured in these records.) But patients can also weigh in on other aspects of study methodologies, such as how to collect data in a way that won’t overly tax participants or how to compare groups of patients for accurate results.

    Plus, hypotheses from patients can be valuable starting points for clinical trials, as Julia Moore Vogel from the Scripps Research Translational Institute explained to me. Vogel, who is a long-hauler herself, is working on a new study at Scripps that’s informed by her and other patients’ experiences with Garmin wearable devices. The projects funded by PLRC’s grant program offer further examples of research studies informed by patient priorities.

    Connect health records from different sources.

    One major challenge with studying Long COVID is that this complex condition can impact every organ system in the body. You can’t just analyze heart disease records from a cardiology practice, or lung function records from a pulmonary practice. Every patient could be seeing ten or more different specialists, and all of those doctors might inform different pieces of the overall disease puzzle.

    As a result, devising systems that better compile and connect records from different sources is a priority for researchers studying Long COVID. Arjun Venkatesh, a patient-reported outcomes researcher, described this as “the clunkiest part” of his work: there are a lot of “hidden barriers” to connecting records, he said, ranging from privacy protections to technical mismatches. (For example, a patient requesting their records from a particular doctor might be asked to provide a fax number, something most people do not have in 2022.)

    Still, new projects are in the works to make this type of data sharing easier. One example is Kindred, an app designed by Yale researchers that empowers patients to request their electronic health records and share them with scientists studying Long COVID. Patients also have more legal protections in making data requests now, thanks to a new federal rule that took effect this fall.

    Use wearables and other new tracking technologies.

    Smart watches, Fitbits, and other similar trackers are usually advertised for consumers interested in better tracking their individual health and fitness. But they can also provide valuable, long-term data to researchers studying health conditions like Long COVID.

    The Scripps Research Translational Institute is one institution focused on wearable devices, through studies like Vogel’s and another program called the DETECT study, led by epidemiologist Jennifer Radin. In DETECT, researchers compile data from people across the country who have volunteered to share their wearable device data with Scripps. After one of the participants gets COVID-19, the scientists can compare their post-COVID health indicators to the patient’s pre-COVID baseline.

    “We compare each person to themselves over time,” Radin told me when I talked to her for my Science News story. This method is different from traditional medical research, in which two similar groups of people are compared to each other on a population-wide basis.

    Wearables research faces a lot of its own challenges, such as expanding access to more people (by making devices more affordable or even giving them to study participants for free) and creating analysis systems that can make sense of thousands of data points from each patient. But I personally find it fascinating and hope to continue covering this area. I was even inspired by my reporting to buy a smart watch, as a holiday present to myself.

    Local surveys and outreach in partnership with community groups.

    Anyone can get Long COVID—young or old, vaccinated or unvaccinated, with or without prior health conditions. But a lot of people still don’t know about this chronic condition, even when they might be experiencing long-term symptoms themselves.

    As a result, a major priority for Long COVID researchers and patient-advocates is improving education and outreach about this condition. New York City has a program that could serve as an example here: NYC Health + Hospitals runs a hotline called AfterCare, which residents can call to learn about Long COVID and city resources, including the public clinics I wrote about.

    While AfterCare has proactively called New Yorkers who previously tested positive for COVID-19, the program’s administrators are concerned that it’s likely not reaching everyone who could be served by the hotline. Local long-haulers who I talked to for my Gothamist/WNYC story want to see broader outreach—like subway ads, billboards, and commercials—telling people about Long COVID.

    These same outreach programs could also help researchers collect more comprehensive data about Long COVID. Last week, THE CITY, another local NYC outlet, reported on some early results of a survey conducted by the city health department to find out which groups of New Yorkers are most vulnerable to the condition. Unsurprisingly, the survey found that Hispanic/Latino residents and those living in the Bronx were disproportionately impacted.

    I hope to see more local health agencies follow in NYC’s lead to conduct surveys like this one, paired with outreach and education about Long COVID. This type of data could go a long way in showing political leaders where more resources are needed.

    More Long COVID reporting

  • Sources and updates, November 27

    • More data on the new, bivalent boosters: A new study, published this week in the CDC’s Morbidity and Mortality Weekly Report, has further evidence that the new, Omicron-specific booster shots provide additional protection against COVID-19 for people who previously received the original vaccines. Researchers used test results from pharmacies to compare symptomatic COVID-19 cases among people who had received the new boosters to those who had only received older vaccines. New booster recipients were less likely to get sick, they found, indicating protection against Omicron BA.4, BA.5, and their sublineages. In short: if you haven’t gotten one of the new boosters yet, now is a good time!
    • Patient-Led Research Collaborative announces grant winners: The Patient-Led Research Collaborative, an organization of Long COVID patient-researchers that has produced groundbreaking work about this condition, just announced the winners of its $5 million fund to support new biomedical research on Long COVID. The winning projects will pursue avenues of top priority to patients, such as understanding post-exertional malaise, testing for microclots, and a clinical trial for the drug naltrexone. Projects were themselves evaluated by a panel of patient experts and patients will be heavily involved in the resulting research. Congrats to the PLRC team on this announcement, and I look forward to following the results of these studies!
    • HHS publishes Health+ Long COVID report: Another piece of Long COVID news this week: the Department of Health and Human Services published a report summarizing interviews with people who have Long COVID. The report was one of several responses to the Biden administration’s call last spring for Long COVID research and support programs. It describes patients’ desires for meaningful research, better healthcare, financial support, and more. While this new report may not be adding much to the body of knowledge about Long COVID, it’s helpful to see this information coming from a major government source.
    • Football games associated with COVID-19 spread: And one more study that caught my attention this week: a new paper in JAMA Network Open describes a correlation between National Football League (NFL) games and COVID-19 spikes in the surrounding counties during the league’s 2020-2021 season. Counties hosting more popular games (with at least 20,000 fans present) were more likely to see increased COVID-19 spread afterwards. The paper shows how large events can contribute to widespread disease transmission, even among people who didn’t themselves attend the events.

    All featured sources
  • Long COVID book recommendations

    Long COVID book recommendations

    The Long Haul and The Long COVID Survival Guide, pictured on Betsy’s desk. (Photo by Betsy Ladyzhets.)

    Two new books about Long COVID were published this month, and I’d like to recommend both of them to any readers interested in learning more about the condition—especially to other journalists covering COVID-19.

    First, The Long COVID Survival Guide (from the Experiment Publishing, released November 8) is a compilation of essays from people with Long COVID, for people with Long COVID, edited by journalist and Body Politic founder Fiona Lowenstein. The book covers everything from getting a medical diagnosis to finding community with advocates for other chronic illnesses.

    The Survival Guide is structured like a manual, every chapter ending with specific “survival tips” for long-haulers to use in their own Long COVID journeys. But it’s also a very relevant read for people who don’t have Long COVID, as it provides context about the different challenges long-haulers might go through: medical gaslighting, cognitive challenges, women’s health issues, learning to ask for help, and more.

    Personally, I got a lot of ideas for future journalism projects from this book. As someone covering scientific research and data, I found the chapters about getting a diagnosis (by Dona Kim Murphey, Rachel Robles, and David Putrino) and about navigating Long COVID research (by Lisa McCorkell) particularly valuable.

    Second, The Long Haul (from Simon & Schuster, released November 15) is a nonfiction narrative about how people with Long COVID came together to better understand the condition and advocate for themselves. Author Ryan Prior is a journalist with experience at CNN and other national outlets, and has lived with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) since he was a teenager.

    Prior brings his lived experience and his journalistic experience—which includes covering other chronic illnesses and patient advocacy movements—to covering Long COVID. The book provides valuable backstories on major Long COVID groups, like Body Politic, the Patient-Led Research Collaborative, and the COVID-19 Longhauler Advocacy Project. It also describes early research efforts seeking to better understand Long COVID, including the first stages of the National Institutes of Health’s RECOVER study.

    I’m still reading The Long Haul (as of this writing, I’m a couple of chapters in), but am already finding it incredibly helpful to learn about how Long COVID advocates started pushing for research and recognition, with context from ME/CFS and other post-viral illness work.

    The Long COVID Survival Guide and The Long Haul might not be the most upbeat reading choices for the holiday season, but they’re really vital for anyone engaging with Long COVID—whether you’re a journalist covering this topic or a friend to a long-hauler. To quote from Dr. Akiko Iwasaki’s afterword, in the Survival Guide:

    Long COVID has changed the narrative. The world no longer has any excuse to make the same mistake over and over again, as we have done for previous pandemic and endemic infections. It’s finally time for us to listen.

    Transparency note: I received advanced copies of both of these books to aid in my work as a journalist covering Long COVID, but am not getting any compensation to write this post—i.e., this isn’t sponsored content or anything. I genuinely want more people to learn about and read these books!

    More Long COVID reporting

  • How data gaps contribute to financial challenges for people with Long COVID

    How data gaps contribute to financial challenges for people with Long COVID

    Long COVID symptoms place “significant activity limitations” on about one-quarter of patients, according to data from the Census and CDC’s Household Pulse Survey.

    This week, I had a story published at Kaiser Health News (KHN) about barriers that people with Long COVID are facing as they apply for disability benefits, focusing on programs offered by the federal Social Security Administration. For me, working on this story highlighted the consequences of the U.S.’s poor data collection on Long COVID.

    The article shares stories from a couple of individual patients who are unable to work due to their Long COVID symptoms, but can’t access the support they need. Here’s how the story starts, focusing on Brooklyn mom Josephine Cabrera Taveras:

    When Josephine Cabrera Taveras was infected with covid-19 in spring 2020, she didn’t anticipate that the virus would knock her out of work for two years and put her family at risk for eviction.

    Taveras, a mother of two in Brooklyn, New York, said her bout with long covid has meant dealing with debilitating symptoms, ranging from breathing difficulties to arthritis, that have prevented her from returning to her job as a nanny. Unable to work — and without access to Social Security Disability Insurance or other government help — Taveras and her family face a looming pile of bills.

    “We are in the midst of possibly losing our apartment because we’re behind on rent,” said Taveras, 32. Her application for Social Security disability assistance, submitted last fall, was rejected, but she is appealing.

    Like many others with long covid, Taveras has fallen through the cracks of a system that was time-consuming and difficult to navigate even before the covid pandemic. People are facing years-long wait times, insufficient legal support, and a lack of clear guidance on how to prove they are disabled — compounded by the challenges of a medical system that does not have a uniform process for diagnosing long covid, according to health experts and disability attorneys.

    Estimates of how many people might be in situations similar to Taveras vary widely. I cite a couple of differing estimates in the story: one report from the Brookings Institution suggests between two and four million people may be out of work due to Long COVID, while another from the National Bureau of Economic Research suggests the number is closer to 500,000.

    The CDC and Census’ Household Pulse Survey reports about 14% of all U.S. adults have experienced Long COVID symptoms, and about one in four adults who currently have Long COVID are experiencing “significant activity limitations” due to their symptoms. But the Social Security Administration itself said that it’s only identified 40,000 disability claims that “include indication of a COVID infection at some point,” in a comment for my story.

    Why do these estimates vary so much? It goes back to the beginning of the pandemic, when PCR tests were not available to many people who likely had COVID-19 and early long-haulers were dismissed by their doctors. As we approach three years with COVID-19, there’s still no clear process for diagnosing Long COVID—much less a comprehensive system for identifying and tracking patients. (Many patients also might not yet identify as disabled, but will start looking for government support in the coming years, advocates pointed out to me.)

    Right now, individual long-haulers lack standards or guidance for the medical paperwork they need to access programs like social security disability. And at a broader level, we lack clear estimates of how many people with Long COVID need these programs. The Household Pulse Survey has been a useful step towards such estimates in recent months, but more detailed data are needed to actually tackle the employment crisis that Long COVID presents.

    Even so, we know enough to say that this is a crisis. For the story, I talked to Katie Bach, a senior fellow at the Brookings Institution and author of the report cited above. She told me that, while researchers disagree on the scale of Long COVID’s impact on employment, even the lowest estimates are reason for concern.

    “Even if the bottom end of my range is overstated by 100%, we’re still losing $50 billion a year in wages,” she said. “I don’t think anyone who looks seriously at Long COVID would say this is not a significant problem for the U.S.”

    I hope to do more reporting on this problem; see last week’s post about my new project at MuckRock for more details. Also, the KHN story is freely available to republish, for any other news outlets that might be interested in sharing it!

    More Long COVID reporting

  • Long COVID patients, I want to hear from you for a new reporting project

    Long COVID patients, I want to hear from you for a new reporting project

    Some parts of the country have very limited options for Long COVID care. (See the Science News article for an interactive version of this map.) Medical access is one of many issues I’d like to look at in a new reporting project.

    As regular readers of this newsletter will know, I’ve done a lot of reporting on Long COVID in the last year. This has ranged from the source list database I put together with Fiona Lowenstein, to feature stories about Long COVID research and patient mental health.

    This week, MuckRock (the public records and investigative nonprofit where I work part-time) launched a new project looking at the U.S. government’s response to the Long COVID crisis. I’m hoping that the project will build on previous work that I’ve done in this area, connecting the dots between different aspects of the crisis—with a focus on government accountability.

    As a first step for the project, we’ve put together an AirTable form where Long COVID patients, advocates, caregivers, researchers, and others connected to this condition can share their experiences and story tips. If you’re part of the Long COVID community, please consider filling it out! The form is pretty short (just two required questions) and information you share won’t be used for publication without permission.

    MuckRock is also looking for other newsrooms that might want to collaborate on this project. If you’re a journalist who’s interested, please reach out to me at betsy@muckrock.com.

    One topic that I’m hoping to dig into more is gaps in access to healthcare for Long COVID. A data project I did for Science News, published this week, shows that clinics dedicated to this condition are generally concentrated in big cities, particularly on the East coast. Yet many of the places with the highest Long COVID prevalence are rural areas in the South and Midwest, according to the Household Pulse survey.

    This story shows just one small aspect of the barriers facing Long COVID patients trying to access the care they need. If you have more information to share about this issue, or anything else related to services needed for Long COVID, please consider filling out MuckRock’s callout form.

    More Long COVID data

  • Sources and updates, October 16

    • New paper outlines the CDC’s COVID-19 data failures: A new study by researchers at Johns Hopkins and Stanford, published this week in PLOS One, outlines missing and poor-quality epidemiological data that hindered the U.S.’s response to COVID-19. The researchers reviewed hundreds of reports by the CDC and other health agencies, finding that public data couldn’t answer key questions ranging from how long immune system protection lasts after an infection to which occupations and settings face the highest COVID-19 risk. (H/t Amy Maxmen.)
    • White House pushes for improvements to indoor air quality: This week, the White House hosted a summit event on indoor air quality while launching new resources to help building owners improve their air. The summit featured talks by government officials and leading experts, discussing why indoor air quality is important—especially in public facilities like schools—and providing recommendations. (For more details, see this Twitter thread by Jon Levy.) Biden officials are calling on building owners to participate in the “Clean Air in Buildings Challenge,” which includes bringing in more clean outdoor air and enhancing filtration. While these are important steps for health improvements, some experts would like to see the federal government go further by mandating clean air.
    • Voters do actually support safety measures, poll shows: New polling data from the left-wing think tank Data for Progress suggests that, contrary to popular narratives, a majority of Americans understand that COVID-19 still poses risks and support safety measures. For example, 74% of likely voters support the federal government requiring schools and workplaces to improve indoor air quality, and 70% of likely voters understand that certain groups (disabled people, seniors, etc.) remain at high risk from COVID-19.
    • New study demonstrates long-term risks of infection: Another notable new paper from this week: researchers in Scotland used health records and surveys to follow about 33,000 people who tested positive for COVID-19, compared to 63,000 who did not. The patients were all surveyed at six, 12, and 18 months post-infection; between the six- and 18-month surveys, about 6% of the cohort had not recovered while 42% reported only partial recovery. As one of the biggest studies to date that doesn’t rely solely on health records, this paper shows how Long COVID can be devastating long-term for patients.
    • Further research backs up testing out of isolation: And one more study I wanted to highlight this week: researchers at the University of California San Francisco examined how long people remained contagious after a coronavirus infection. The study included over 60,000 people who were tested at community sites in San Francisco. Five days after symptoms started, the researchers found, about 80% of patients infected during the Omicron BA.1 period were still positive on rapid tests—suggesting that, as other studies have found in the past, five days is an inadequate isolation period. Rapid testing out of isolation is the way to go.

    All featured sources

  • Sources and updates, October 9

    • Household Pulse Survey updates, expands Long COVID data: This week, the CDC and Census released an update of their Household Pulse Survey results on how Long COVID is impacting Americans. In addition to more recent data on Long COVID prevalence, the update includes new information on how adults with the condition find it limiting their day-to-day activities. The data shows that, out of all adults currently experiencing Long COVID symptoms, over 80% have some activity limitations and 25% have “significant” activity limitations. (For more context on this dataset, see my post from June.)
    • NIH shares update on RECOVER study: Speaking of Long COVID, the National Institutes of Health’s Directors Blog shared a post this week with updates on its flagship RECOVER study to learn more about the condition. Major updates include: RECOVER’s current recruitment goal is 17,000 adults and 18,000 children; the NIH recently awarded more than 40 grants to research projects examining the condition’s underlying biology; and RECOVER is utilizing electronic health records to track patients over time. While this is all valuable progress, patient advocates have expressed concerns about limited involvement by post-viral chronic illness experts in RECOVER so far.
    • Paxlovid is going under-utilized, study finds: A new report from the health records company Epic Research provides evidence that Paxlovid reduces severe COVID-19 outcomes: patients over age 50 who received the antiviral drug were about three times less likely to be hospitalized, compared with those who didn’t. The study also found, however, that eligible Americans aren’t taking advantage of this treatment. Out of about 570,000 people who “could have received Paxlovid” between March and August 2022, only 146,000 (about one in four) actually got prescriptions. Paxlovid needs to be better advertised and easier to access.
    • New COVID-19 pill added to Medicines Patent Pool: And a new COVID-19 treatment option is becoming available internationally. Shionogi, a Japanese pharmaceutical company, recently signed an agreement with the Medicines Patent Pool, an international public health organization that facilitates increased drug access in low- and middle-income countries. The agreement allows other drug companies to make Shoinogi’s antiviral COVID-19 pill, called ensitrelvir fumaric acid, which has seen some promising results in clinical trials so far. Paxlovid and Molnupiravir (Merck’s antiviral pill) are already licensed by the pool.
    • Patient access to electronic health records expands: This past Thursday, new federal rules took effect requiring healthcare companies to “give patients unfettered access to their full health records in digital format,” as STAT News reporter Casey Ross put it. This is a major milestone for the democratization of health data, as patient records have historically been locked in a labyrinth of private databases—though more public education is needed to help people actually take advantage of the new rules. Personally, I hope this is a first step towards more record-sharing between health institutions, which could be a key step for more comprehensive analysis in the future.
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  • Sources and updates, September 25

    • CDC adds data on new booster shots: The latest addition to the CDC’s COVID Data Tracker is the Omicron-specific, bivalent booster shots, authorized a couple of weeks ago. So far, the CDC has only provided a total count of Omicron booster recipients (4.4 million, as of September 21) and incorporated these boosters into total counts of Americans who’ve received “first” and “second boosters. A note at the top of the dashboard explains the CDC is working to provide more granular data about the new boosters as separated out from past boosters.
    • Evidence Commons (ASU): Researchers at Arizona State University’s College of Health Solutions have compiled this detailed dashboard of scientific publications related to COVID-19 tests, supported with funding from the Rockefeller Foundation. The dashboard incorporates information from over 3,000 papers, sorted by the type of test under study, methodology, analysis location, and more. It’s a helpful tool to sort through diagnostic details that are often buried in technical documents.
    • Helix announces new CDC partnership: Speaking of testing, the viral sequencing and population genomics company Helix announced this week that it has an “extended agreement” with the CDC to sequence coronavirus samples for the agency’s analysis. While Helix has been working with the CDC on variant tracking for some time, the new partnership extends this important effort: Helix (and research partners) will sequence over 3,000 coronavirus samples per week for the next year, “with the option to double the number of samples during surge moments,” according to the company’s press release.
    • Pathogen Genomics Centers of Excellence: The CDC has also directed new surveillance funding to five state health departments that will test out new genomics technologies and respond to infectious disease outbreaks. These five departments—Georgia, Massachusetts, Minnesota, Virginia, and Washington—are receiving $90 million over the next five years; the funding came out of $1.7 billion allocated for genomic surveillance in the American Rescue Plan. I’m glad to see this sustained funding going beyond COVID-19, though I wish more than five states were getting the money!
    • Long-term nervous system damage from COVID-19: Ziyad Al-Aly and his team at the Veterans Affairs St. Louis Healthcare System have published a new paper on long-term impacts from a COVID-19 infection. The study used a large dataset of electronic health records from a national VA database, including 154,000 people with COVID-19 and over five million controls. COVID-19 patients had an elevated risk of strokes, cognition and memory problems, seizures, mental health disorders, encephalitis, and more. While the VA population isn’t the best representation for the U.S. population as a whole (it skews older and male), the study still provides evidence for long-term neurological complications from COVID-19.
    • Long COVID estimates in Europe: And one more piece of Long COVID news for this week: the World Health Organization’s European division has produced new estimates on Long COVID for the continent. Between 10% and 20% of COVID-19 cases in Europe have led to mid- or long-term symptoms, the WHO found, impacting up to 17 million people. The study also found women are more likely to develop Long COVID.

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