Covid-19 is still infecting and reinfecting millions of people around the world — causing more and more people to develop Long Covid. But public health and government agencies worldwide have failed to warn people about Long Covid and support those affected, and still aren’t effectively funding research to find effective treatments.
In response to the lack of support, people with Long Covid in the U.S., Canada, U.K., and Europe are buying billboard ads to raise awareness about the disease and promote the urgent need for clinical trials. These billboards aim to do the job of public health authorities, advocates who spoke to The Sick Times explained.
However, as some billboard efforts in the U.S. have run into roadblocks, legal experts say there’s a potential case that advocates may be experiencing discrimination under the Americans with Disabilities Act (ADA).
Many Long Covid advocates are using Blip Billboards, a platform that allows people to submit digital billboard designs to be shown by billboard owners across the country. On this platform, advocates have found their designs might be accepted by some billboard owners but rejected by others for no clear reasons, as the company is not transparent about individual owners’ advertisement policies. Altogether, this results in an enormous amount of frustration, a waste of valuable energy, and time, advocates told The Sick Times.
Sophie Dimitriou, a Berlin-based graphic designer who developed Long Covid in 2023, started Berlin Buyers Club, one of several patient advocacy groups renting out billboard space to share messages about the impact of Long Covid. “They [public health officials] want to try and push us away as collateral damage,” Dimitriou says. “We want to say no, we will not become collateral damage, we are not going to be quiet.”
The guerilla public health campaign for Long Covid
Groups around the world, largely run by people themselves affected by Long Covid, are spearheading a volunteer-driven decentralized public health campaign.
Dmitrou started Berlin Buyers Club in 2023 with flashy, multilingual stickers she designed to raise awareness about Long Covid and Myalgic Encephalomyelitis (ME). The international project grew as Dmitrou brought on other people with Long Covid to develop other merchandise and designs, including billboards. Berlin Buyers Club provides nine free billboard designs that advocates can use. To date, their designs have been featured on 22 billboards across the U.S., where it is easier to purchase billboard space than in other countries.
The U.S.-based COVID-19 Longhauler Advocacy Project (C-19 LAP) has also begun setting up billboards in the U.S. The group has been involved in advocacy efforts since 2020 as a 501(c)(3) nonprofit organization: their activities include lobbying to increase research funding for Long Covid and advising government agencies. To date, they’ve also set up 19 billboards across 19 different states.
In the U.K., patient-led group Not Recovered U.K., a chapter of an international organization that advocates for Long Covid, ME/CFS, and other complex chronic illness and vaccine injuries, is leading a similar campaign, with billboards reading: “Long Covid & ME/CFS destroy lives. No help. No treatment. No cure. We demand clinical trials now!” As of the start of 2024, Not Recovered U.K. has put up ten billboards and even garnered a milquetoast response from the medical research council in the U.K.
Another U.K.-based charity established in 2020, Long Covid SOS, has also been key in advocacy and awareness efforts in the U.K. This charity’s efforts include participation in the U.K.’s COVID inquiry, investigating the government’s decision-making during the pandemic. On December 6, the group rented a “digivan” — a truck with a digital screen — which drove around the Inquiry venue playing a reel that warned onlookers about Long Covid.
They [public health officials] want to try and push us away as collateral damage. We want to say no, we will not become collateral damage, we are not going to be quiet.
Sophie Dimitriou
Putting up billboards isn’t easy
Many U.S.-based organizations and advocates use the Orem, Utah-based company Blip Billboards to run their campaigns. People can submit their billboard designs, where they want them shown, and how much money they want to pay to show their message. They can set a limit for how much money they want to spend on the billboard in a given period of time, and will only be charged based on the number of times the billboard is displayed.
Since these are digital billboards, one location will often play multiple billboards throughout the day and a higher payment typically corresponds to more airtime. Some locations might be more sought after, making it harder to receive airtime. For example, one advocate might pay $20 for a billboard to be shown for one day in Texas and receive 30,000 views over two days, while spending the same amount in a more sought-after location like New York Times Square wouldn’t be as fruitful.
Long Covid advocates have run into roadblocks, including rejections of their billboard designs on unclear grounds and limited airtime in certain locations. These rejections could be considered discrimination, one legal expert told The Sick Times.
Karyn Bishof, founder and president of C-19 LAP, shared that one billboard owner rejected her organization’s design without explaining why. On November 17, 2023, Bishof received an email from Blip explaining that the owner did not want to put up their design because they do not allow political messaging.
“This is a public health message from a 501 C(3) organization, we are not permitted to do political advocacy work,” Bishof responded. Afterward, the Blip representative said they misspoke, but affirmed that the design still went against the sign owners’ advertisement policy.
Bishof ran into another obstacle trying to get ads up on New Year’s Eve: owners of two billboards in Michigan and California rejected designs, while Blip failed to assess a design submitted to New York City’s Times Square in time for the holiday.
“Unfortunately there really isn’t an inquiring option — the rejections appear to be because those particular board owners did not want to approve non-commercial advertisements,” Christopher Trumble, who works as customer support for Blip Billboards, told Bishof.
Lack of transparency could contribute to potential discrimination
Despite paying for the same amount of billboard plays across different locations, Bishof saw a vast disparity in airtime. The same billboard might garner 1,426 views in one location but barely get any play in another location, and she has no idea why.
According to the company, billboard owners have specific slots in their advertisement rotation that are filled up by ads submitted directly to the owner while the rest of the slots are filled up with ads from various customers on Blip, like C-19 LAP. Trumble clarified that billboard owners do not have “direct control” over how often certain ads will play. Instead, Blip determines airtime based on an algorithm that takes the budgets of all campaigns being run on the same billboard into account, and slots them into the rotation. “Our system attempts to spend daily budgets of each campaign if the selected boards have enough availability to do so,” he said.
In short, it might be a case of bad luck: Other customers might be paying more for their design to appear in the same location at the same time.
Billboard owners get the final say on designs, Trumble added. Disabled advocates navigating this system have no way of knowing the advertising policies of individual locations in advance. Due to this lack of transparency, advocates may spend a lot of time setting up and submitting a billboard only to have it rejected.
The rejection of billboard designs could constitute discrimination against Long Covid under the ADA, said Nate Crippes, public affairs supervising attorney at the Disability Law Center in Utah, if billboard owners are denying services to disabled people. This motivation may be hard to demonstrate, though, Crippes said, as there could be other reasons billboard owners deny Long Covid-related designs, such as belief in conspiracy theories against vaccines.
Max Rodriguez, an attorney who currently practices in New York, agrees, explaining that state and federal laws are supposed to protect people with disabilities from discrimination in public places. “Anti-discrimination laws have been used to hold third-party platforms accountable in other contexts,” he said, referring to a recently settled Airbnb lawsuit which alleged that the platform violated a law in the state of Oregon by allowing hosts to see the names and pictures of would-be renters, leading to racial discrimination. “These billboard platforms should take a lesson from other companies’ mistakes and ensure they are preventing discrimination instead of encouraging it,” Rodriguez said.
To improve the billboard submission process for advocates, Blip Billboards could provide more transparent explanations for rejections and share individual advertisers’ policies in advance. Improving transparency would also help the company show that billboard owners using the platform aren’t discriminating against people with disabilities.
Do awareness campaigns work?
Awareness campaigns are a common strategy for public health agencies, as some success stories suggest that such campaigns can impact health-related behaviors. For example, there is strong evidence that mass media campaigns against tobacco addiction can lead to a reduction in smoking. In South Africa, public health campaigns warning about HIV are associated with increased condom use, testing, and knowledge of HIV.
Long Covid advocacy groups are hopeful that their campaigns could similarly move the needle: more public awareness would mean more people taking preventative measures, such as masking in public spaces, and could also pressure governments to take action on collective measures and fund research into Long Covid treatments.
Keith Muise, a teacher from Stephenville, Newfoundland and Labrador and member of the advocacy organization COVID Awareness 2023, set up the first Canadian billboard in mid-December of last year. His design read: “LONG COVID RUINS LIVES, MASK UP!”
“People aren’t looking out for it [Long Covid] because they literally don’t know what it is,” Muise told The Sick Times. Others might know what it is but have misconceptions, he said: They might think that kids and healthy people don’t get Long Covid or that it’s impossible to get if you’re vaccinated. Muise thinks awareness is important, especially for people who have these misconceptions: “These are still our neighbors or our family members, or people we know or care about.”
Billboards provide important visibility “to a condition that is still so invisible” thanks to inadequate attention from public officials and the media, agreed Deborah Lupton, a professor at the University of New South Wales who studies the social aspects of health, medicine, and risk. “We need to see public health and the mainstream news media step up and educate the public about the long-term effects of Covid infection and reinfection,” she said.
For advocates, the lack of institutional support is frustrating as many people with Long Covid are disabled and unable to work themselves, Bishof said. “We have to spend our limited spoons to do basic public health messaging,” she said, adding that public health agencies could easily do the work to reach way more people than a patient-led billboard campaign ever could.
Disclaimer: Sophie Dimitriou also designed The Sick Times’ logos. The design project had no involvement with this story.
Simon Spichak is a Toronto-based science and health writer with a MSc in neuroscience. His work has been published in The Guardian’s Scientific Observer, New York Times, The Daily Beast, Proto.Life, and other outlets. He is the founder of a low-cost online therapy clinic for students called Resolvve and runs a newsletter documenting the expansion of medical euthanasia in Canada.
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