It’s “all hands on deck” for Long Covid Awareness Day as the CDC ignores Long Covid in new guidance
People with Long Covid (pwLC), advocates, and their allies from around the world are organizing in preparation of the second annual Long Covid Awareness Day, following similar grassroots advocacy efforts in March 2023. This year’s Awareness Day, pwLC plan to highlight the urgency of the Long Covid crisis and the impacts of the ongoing Covid-19 pandemic, and to educate the public on the stigmatized disease often swept under the rug by politicians and public health officials like, Mandy Cohen, director of the Centers for Disease Control and Prevention (CDC).
Events for Long Covid Awareness Day, organized by a variety of advocacy and grassroots groups, include in-person marches, toolkits, letter-writing campaigns, and efforts to light public buildings with teal, which is the color for Long Covid awareness. Many of these actions have been further escalated to increase awareness about the disease following a change to CDC guidance that advocates say will lead to more Long Covid cases.
On the first day of Long Covid Awareness Month, the CDC dropped their Covid-specific isolation guidelines: instead of recommending that people stay home for five days after testing positive, the agency now recommends isolating based on respiratory symptoms, saying people can “go back to normal activities” after just one day if symptoms are mild and improving. The new recommendations aren’t supported by a change in data or science on infectiousness and received heavy backlash. For example, the advocacy group Long Covid Action Project has organized a letter to public officials demanding a congressional hearing and criminal investigation of the CDC.
Though initial reporting on this change by the Washington Post suggested the guidance would be released in April after time for public comment, the CDC made the change a month early, with no time for feedback. The organization also quickly began hiding critiques of the guidance on social media, including comments from people with Long Covid, those at high risk for Covid-19, and other members of the public who shared articles and studies that underscored the lack of scientific support for the new isolation guidance.
“In light of the CDC’s recent decision to shorten the Covid isolation period, now more than ever, we must join together on March 15th and unite as a global community with the support of Long Covid organizations, researchers, doctors, and allies… to confront Long Covid,” said Angela Laffin, the founder of International Long Covid Awareness (ILCA), an organization that plans events and raises awareness about the disease.
“[The CDC’s] new guidance will result in more illness, disability, and death,” said Paul Hennessy, one of the organizers of Long Covid D.C. (LC/DC), a grassroots group that is planning a respirator-required demonstration at the Lincoln Memorial in Washington D.C. on March 15. “Mandy Cohen herself said that her mission was to rebuild trust in the CDC, but you don’t rebuild trust by ignoring hard truths of what this virus is capable of.”
Dara York, a co-organizer for the demonstration, said that she hopes it will empower patients to share their experiences with the disease, especially in the face of the CDC’s abandonment of pwLC. The event will be live-streamed from home for those unable to attend in person. York, a nurse who has Long Covid, has been organizing the demonstration from her home despite recently experiencing a stroke during a reinfection with Covid-19. “Reinfections are dangerous,” she said, explaining that she hopes to spread awareness about the risk of reinfections in people with and without Long Covid.
Since many people with Long Covid are unable to travel or partake in in-person events, many other groups have organized actions and campaigns that people living with the disease and related conditions can partake in from home.
The Covid-19 Longhauler Advocacy Project (C19LAP) is organizing actions calling on President Biden to discuss Long Covid during the State of the Union Address on March 7, said founder Karyn Bishof. Over forty Long Covid researchers, disability groups, public health experts, and others wrote an open letter to the president last December, demanding he speak about the disease and address the Long Covid crisis.
“The President must acknowledge that there’s still an ongoing pandemic, that there is still a mass disabling event happening, and that this community needs help,” Bishof said, explaining that Biden has only publicly said the words “Long Covid” once, in 2022.
C19LAP has put together an extensive toolkit of actions that pwLC and their allies can use to contact various legislative groups, including the Senate HELP committee, which held the hearing in January that highlighted the Long Covid crisis but failed to address the prevention of Covid-19.
Bishof said she has run into obstacles in planning for Long Covid Awareness Day, particularly while trying to light buildings like the Empire State Building in observation of the day. Herapplication to light the Empire State Building was denied without a reason, she said. “It could be a political issue,” Bishof said, noting that billboard companies also rejected her proposed Long Covid messages, which The Sick Times covered in an investigative feature earlier this year. She also believes advocates are running into obstacles because Long Covid Day Awareness Day is not formally recognized.
One action in C19LAP’s toolkit is a letter demanding that Long Covid Awareness be formally recognized by the U.S. government in a congressional resolution.“This year we are trying to formalize Long Covid Awareness Day,” Bishof said. If the day were formally recognized, it may be easier for advocates to plan events and efforts, as well as for the disease to gain the recognition it deserves. “This year is all hands on deck,” Bishof said.
Events for Long Covid Awareness Day and Month are also taking place internationally. The public awareness campaign Billboards for LC/ME that places billboards about Long Covid and myalgic encephalomyelitis (ME) is hiring a digital advertising van to raise awareness about Long Covid in London on March 15, as well as handing out leaflets with information about the disease to the public.
Advocates are also planning demonstrations in Spain and teal lighting of three Canadian landmarks, including Toronto’s CN Tower, to observe the day, according to a press release from International Long Covid Awareness Day. A group in Australia, Long Covid Support Australia, plans to light over 20 bridges and landmarks across the country on March 15.
Other related Covid-19 memorials are taking place this month, including Marked By Covid’s Covid-19 Memorial Day. The Virtual Vigil happened on March 4 and featured remarks by Marked by Covid co-founder Kristin Urquiza, Senator Elizabeth Warren, and journalists Steven Thrasher and Ed Yong, as well as collective grief and Black liberation advocate Malkia Devich Cyril.
Senator Ed Markey and Elizabeth Warren are currently leading a call to establish the first Monday in March as “Covid-19 Victims Memorial Day,” but have garnered criticism from some pwLC who say that their efforts ring hollow by failing to condemn the CDC’s new guidelines and include measures to control the pandemic.
During the Marked by Covid Virtual Vigil, Malkia Devich Cyril addressed thousands. “The American government and private interests have done everything possible to deny our losses and disenfranchise our grief,” Cyril said. “We have to make the courageous decision to feel in the midst of all the shock and anguish we still experience. To turn and face and feel our losses even as the powers that be demand that we repress and reject them. We say no.”
This story was originally published at The Sick Times, an independent news site chronicling the Long Covid crisis. Sign up for our weekly newsletter here and donate here to support our original reporting.
