Katie Drackert delivers a speech at the Austin city council meeting where councilmembers recognized International Long COVID Awareness Day. Photo via Virginia Hernandez / Long COVID Collective.
Around the world, people with Long COVID recognized International Long COVID Awareness Day with events, demonstrations, and buildings lit up in teal. Austin, Texas, is the latest city to recognize the day, through a proclamation from the Austin city council — a major step in the state.
Los Angeles’s city council also recently recognized Long COVID Awareness Day in a resolution passed on February 24. Other cities and states, from Vermont to Minnesota, have taken similar actions, and hundreds of buildings were illuminated in teal on March 15 through an effort called “Lit for Long COVID.”
But New York City is largely absent from the recognition, despite a petition calling on the city to formally acknowledge the day and light City Hall in teal.
“There are so many red states that have landmarks lighting up for Long COVID,” said Julie Lam, founder of Mask Together America and a lead advocate behind the New York City petition. She is proud to see the recognition across the U.S., but disappointed it hasn’t yet extended to her home city, she told The Sick Times.
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Austin, Texas recognizes awareness day
Austin advocates, photo via Katie Drackert
Austin advocates, photo via Katie Drackert
Austin advocates, photo via Katie Drackert
The city council of Austin, Texas, recognized International Long COVID Awareness Day during a council meeting on March 12. Local advocacy group Clear the Air ATX also organized a petition and reached out to two city councilmembers, Vanessa Fuentes and Marc Duchen, who had been following the group on social media, said organizer Katie Drackert.
Advocates from Clear the Air ATX and the Long COVID Collective, another local organization that provides community support, offered feedback to those councilmembers’ staffers on the awareness day proclamation. The two groups began collaborating on the effort as they “happened to both submit this at the same time,” said Rachel Madison, co-founder and chair of the Long COVID Collective.
At the city council meeting, representatives from both groups spoke alongside a local Long COVID clinician and councilmembers. “When I was actually standing behind [Councilmember Duchen] while he was speaking, it was probably the first time I felt seen by the community” of Austin, said Long COVID Collective member Cindy Kohler.
Drackert emphasized that this proclamation “is not where it ends for Clear the Air.” In addition to recognizing the awareness day, the organization’s petition — which is still accepting new signatures — calls on the city of Austin to “increase visibility for Long COVID and International Long COVID Awareness Day” using social media and other communications channels, and to support an updated resource on Long COVID for Austin residents.
“Getting the city on the record saying that Long COVID awareness matters is a really great starting point for further advocacy,” Drackert said. “I know people can view these proclamations as performative, but I would encourage people to see it as a point of leverage for seeking better education, awareness and care.”
Collaboration between the two local groups was instrumental in making the recognition happen, Drackert said. For other advocates interested in taking similar actions in their cities and regions, she recommended “teaming up with other organizations” and starting to plan far ahead of time, noting that Clear the Air ATX launched their petition on February 11. “If people really want to have some bangers, start planning for Long COVID Awareness [Day] 2027 sooner rather than later.”
Madison, from the Long COVID Collective, wants to help other advocates take similar steps toward formal recognition in other cities and regions. While many of the Collective’s members are in Texas, the organization operates mostly virtually and has members across the U.S. and internationally. “Part of our goal for next year is … sharing our resources from this year, like our speech, our proclamation request, to then be adapted to other cities,” she said.
I know people can view these proclamations as performative, but I would encourage people to see it as a point of leverage for seeking better education, awareness and care.
Katie Drackert, Clear the Air ATX
New York City has yet to acknowledge the day
Across the country, Mask Together America’s New York chapter was inspired by the recent win in Los Angeles to write a petition calling on NYC Mayor Zohran Mamdani to recognize Long COVID Awareness Day. The petition has over 400 signatures, and 21 Long COVID and COVID-19 advocacy organizations have endorsed it.
As an early epicenter of COVID-19 spread in spring 2020, New York City has also become a center of Long COVID research and activism. The city is home to several prominent Long COVID clinics, including clinics run by the public healthcare system NYC Health + Hospitals. The local health department has also conducted Long COVID research, seeking to study how the chronic disease has impacted New Yorkers.
In one 2022 survey, about 80% of New Yorkers with confirmed or suspected COVID-19 cases experienced at least one symptom lasting one month or longer.
Lam and other advocates at Mask Together America’s New York chapter shared their petition with several different city offices and agencies, including the city health department, office for people with disabilities, and Manhattan Borough President. They also submitted a request for a mayoral proclamation. On March 11, they received a response from the mayor’s office stating the office was “unable to fulfill [the] request for a mayoral commendation.”
The organization has faced some challenges finding the best recipient for their petition within city government, said Mask Together America scientific advisor Angelique Corthals. Forms like the ones they used can be a “black box, and you don’t know who’s at the other end,” she said.
Corthals and her fellow advocates plan to continue trying to contact NYC policymakers about Long COVID recognition even after the official awareness day passes. They have put together a letter template for New Yorkers to contact their city councilmembers. Corthals is also working with colleagues at the City University of New York’s John Jay College of Criminal Justice, where she is a professor, to advance the effort.
Beyond the lack of recognition for this awareness day in New York City, there is an “ongoing need for a stronger response, at both the city and federal levels, to the Long COVID crisis,” wrote Gabriel San Emeterio, co-founder of Long COVID Justice,* in a statement. “Ideally, by next year, the city will not only recognize Long COVID Awareness Day but also advance systems of care for the estimated 1 million New Yorkers living with Long COVID who need research, services, benefits, and treatment.”
Taking action on Long COVID should also include “structural prevention measures, like improving indoor air quality and supporting masking,” San Emeterio added.
Ideally, by next year, the city will not only recognize Long COVID Awareness Day but also advance systems of care for the estimated 1 million New Yorkers living with Long COVID who need research, services, benefits, and treatment.
Gabriel San Emeterio, Long COVID Justice
More actions across the U.S.
Maryland demonstration, photo via Adam Van Bavel
Los Angeles demonstration, photo via Miles Griffis
Photo via San Diego Convention Center
San Mamés Stadium in Bilbao, Spain. Photo via Long CoVID Euskal Herria Elkartea.
Doña Casilda Iturrizar Park in Bilbao, Spain. Photo via Long CoVID Euskal Herria Elkartea.
While New York City’s city hall building was not lit up in teal on Sunday, two other landmarks in the city were: the David N. Dinkins Municipal Building and Gotham Hall. Both joined hundreds of other landmarks worldwide in an effort called Lit for Long COVID, coordinated by the Long COVID Foundation.
The Long COVID Foundation “quarterbacked, helped other orgs and people by providing information, and reached out to many places as well,” wrote Devin Russell, the organization’s CEO. “It was just sheer effort and teamwork to get more than 500 places illuminated.”
The foundation also sponsored a billboard in Times Square, which ran a one-minute message about Long COVID twice an hour. “Long COVID is not rare!” it read. “Hundreds of millions have developed Long COVID, including healthy active people and children. Every COVID infection can cause damage. High-quality masks can help protect you.”
Overall, the Lit for Long COVID campaign included 140 landmarks in the U.S., 119 in Canada, 105 in Australia, 42 in the U.K., and many more in other countries. Other organizations involved with the campaign included International Long COVID Awareness, the Canadian COVID Society, Long CoVID Euskal Herria Elkartea, Clean Air LA, Asociación Long COVID Aragón, Association Winslow Santé Publique, and more, Russell said.
Advocates also gathered in Maryland, where lawmakers are considering legislation that would support grants and loans for Long COVID research and development. At the demonstration, held on March 9 at the Maryland state capitol building, advocates “held a moment of silence for the millions who are now disabled and out of the workforce due to Long COVID,” wrote organizer Adam Van Bavel from the group Maryland Indoor Air Quality Advocates.
“Since 2020, the number of disabled workers has doubled,” Van Bavel wrote. “Action must be taken now — not in the future. This isn’t a want, it’s a dire necessity.”
Action must be taken now — not in the future. This isn’t a want, it’s a dire necessity.
Adam Van Bavel, Maryland Indoor Air Quality Advocates
Legislation is underway in Vermont, too: on March 13, the state’s Senate passed a resolution recognizing March as International Long COVID Awareness Month and March 15 as the awareness day. Next, the state’s House of Representatives will consider the resolution, according to advocate Ylan Roy.
“It’s an emerging disease, but there are over 20 million people with it,” said Vermont Senator Virginia Lyons, chair of the health and welfare committee, at the March 13 hearing. “We’re learning more and more about it, and how to help people who have developed a disability with Long COVID.”
The Senate committee also plans to send a copy of this resolution to Vermont’s state health department, Lyons said.
International and online demonstrations
Demonstration in Calgary, photo via Karen Lord / Canadian Covid Society
Art display at the Calgary demonstration, photo via Karen Lord / Canadian Covid Society
Around the world, other Long COVID organizations demonstrated and lit up landmarks. The Canadian COVID Society held four events across the country, in Vancouver, Calgary, Toronto, and Montreal. At each one, speakers with Long COVID and scientists studying the condition shared their experiences.
“We have had cold weather this week and it was still snowy at our location, and –14º [Celsius] here this morning as we set up,” wrote Karen Lord, one of the organizers at the Calgary location. “Due to the cold, we had tech difficulties and lost our PA system partway through, but the sun was out and we managed a pretty solid event for a first attempt.”
Toronto’s CN Tower — the tallest structure in Canada — was lit in teal for the awareness day, along with other landmarks from Vancouver City Hall to Niagara Falls.
Landmarks were also illuminated across Europe. In Spain, this included several landmarks in Barcelona and in Bilbao. The organization Long CoVID Euskal Herria Elkartea organized a demonstration in front of the Guggenheim Museum Bilbao.
In Australia, several advocacy groups for Long COVID and myalgic encephalomyelitis (ME) held a meeting at the national parliament building in Canberra on March 10. Policymakers, researchers, clinicians, and people with Long COVID and ME discussed how Australian institutions could better support those with the diseases.
“All Snakes No Ladders” board game, photo via Farida Iqbal / FB Australia Long Covid Community
Photo via Farida Iqbal / FB Australia Long Covid Community
Photo via Farida Iqbal / FB Australia Long Covid Community
Then, in Melbourne on March 15, other Australian advocates held a demonstration outside Victoria’s parliament building. They designed a Long COVID-themed board game, called “All Snakes No Ladders,” in which “every single obstacle or situation” was taken from “someone’s lived experience navigating their life while dealing with Long COVID and the systemic barriers they face,” wrote organizer Kirsty Yeates.
“It was a big day! We made it work despite some difficult conditions, like the heat and the competition with three other protests in Melbourne on the same day,” said Farida Iqbal, another organizer of the board game demonstration.
Some organizations hosted virtual events or campaigns, including Twitter/X spaces and webinars. Renegade Research’s virtual event, a community dialogue on Twitter/X, is coming up on Wednesday starting at 4 p.m. ET. And the COVID-19 Longhauler Advocacy Project has compiled prompts for spreading awareness on social media that community members can use throughout this week.
Beyond calling for recognition, many Long COVID advocates see the international awareness day as an opportunity to build solidarity both within and outside the community. Through organizing the board game demonstration, “We have established a solid activist team now that is working really well together!” Yeates wrote. “This is exciting, and sets us up well to do even more powerful things in future.”
We have established a solid activist team now that is working really well together! … This is exciting, and sets us up well to do even more powerful things in future.
Kirsty Yeates, Australian Long Covid Community
*Editor’s note: The Sick Times collaborated with Long COVID Justice to develop the Long COVID Essentials resource sheets. Our newsroom operates independently of financial supporters.
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