Governments around the world mobilized quickly to curb early Covid-19 infections, but patients stuck with long-term debilitating symptoms of the virus (sometimes unable to work or perform basic daily tasks) feel that the National and international responses have ignored one of the most important responses to the pandemic. effects, nearly a dozen activists from 10 countries told POLITICO.
“We just have to rot,” said Chantal Britt, founder and president of Long Covid Switzerland. “That’s why all these organizations come up – there’s no official help.”
The Swiss government declined to comment on the record.
Some studies suggest that long-term Covid could affect up to 30 percent of infected people, a fact that is often not discussed publicly when governments discuss what preventive measures are appropriate at this stage of the pandemic. The long-term effects of the virus could disable enough people even to have a global economic impact that researchers worry about.
And while the United States has invested more than a billion dollars to better understand the disease, patients in the United States and beyond, where most countries invest less, feel confused and ignored as their numbers grow.
Many advocates, who spend their days lobbying governments, are also patients struggling with a range of symptoms, including extreme fatigue, shortness of breath, diarrhea and heart palpitations.
Some, whether because they have little access to basic health care or because they get little response from their government or doctors, are using Facebook and other social networking sites to create support groups, share ideas and commiserate.
“In terms of government … I don’t even think it’s being discussed,” said Wachuka Gichohi, a Covid advocate in Kenya who started the Long Covid Kenya support group on Facebook.
Her group, like many that have formed online, is a place where patients share information and advice about the disease, especially helpful for those who can’t afford a doctor.
But social media support groups and patient initiatives are barely enough, advocates say. They want governments to take the risks of prolonged Covid seriously, through more research funding, clearer protocols for treating the syndrome, guaranteeing disability benefits for patients who cannot work and more widely recognizing the public risk.
“Increasingly, the government just wants to move on. It’s all about: ‘Now we have to live with Covid,’ said Jo House, an advocate from the UK. this.”
Governments have pointed to circumstances that have made action difficult: little comprehensive evidence about the cause of the disease and few proven cures. And many countries lack the resources to try to deal with prolonged Covid, while dealing with new infections and making up for lost time fighting diseases such as tuberculosis, HIV and malaria.
Even countries with resilient health systems face other crises, such as economic challenges, regional wars, record-breaking heat or devastating famines.
But that doesn’t mean the issue is being ignored, European Health and Food Safety Commissioner Stella Kyriakides said in a statement to POLITICO.
“Effective therapeutics can also address negative health effects that may persist after infections have resolved, and we need to prioritize their development and implementation,” he said. “We are working on this with our agencies and Member States, and will continue to prioritize communication about the benefits [of] vaccination and strengthening of immunity”.
“No one helps us”
Advocates have said the politicization of the pandemic, not just a problem in the United States, has made it harder to act. Suggestions that Covid-19 still poses a significant risk because of long-term symptoms are unpopular, especially for governments trying to navigate a faltering global economy or cater to an electorate that is weary of more than two years of warnings about the virus .
“There seems to be a political cost to the pandemic, a cost that most governments are unwilling to bear,” César Medina, leader of one of Mexico’s longstanding Covid advocacy groups, said in a message from WhatsApp.
As more people have developed symptoms, Covid-19 advocacy organizations have grown in size and reach, particularly in Europe, where several national-level organizations have created Long Covid Europe and are working to become an non-governmental organization approved by the World Health Organization.
The groups have said recognition, research and rehabilitation are their overall goals, language that has been adopted in WHO guidelines.
And while some groups such as the WHO have long recognized the need for more work on Covid, patients say their governments are acting as if the threat isn’t real.
“There are so many things we have to learn and no one is helping us,” said Eleni Iasonidou, a pediatrician who heads Long Covid Greece. “In 10 years, we’ll have answers and Covid will take its place as a disease for a long time. But in the meantime, we’re all here and we have to live with it for those 10 years, and we’re already living with two years of symptoms”.
The concern is not just for people who have had Covid for a long time. Advocates have said it is irresponsible not to discuss the threat the little-understood syndrome poses to the population, especially as the number of cumulative infections grows, fueled by increasingly contagious variants.
“The government needs to inform its citizens about this risk so you can make informed decisions,” said Emma Moderato, a long-time Covid advocate in Sweden. “We are often not seen as part of the pandemic.”
“Progress has been minimal”
Some governments, especially in Europe, are investing millions in research, collecting data, setting up interdisciplinary and specialist clinics and disseminating information about the lasting impacts of Covid-19. Several are working to establish protocols, from health ministries to disability insurance, according to government announcements and statements to POLITICO.
A spokesman for the National Health Service in the UK told POLITICO that a new plan for long-term Covid patients would be published in a few weeks. And a spokesman for the German Ministry of Health outlined the country’s long and ongoing plan to deal with the long Covid, which includes specialist clinics, insurance policies and pension benefits for patients and avenues for research funding .
“Ensuring that patients with COVID-19 receive appropriate care is an important policy priority,” the statement said.
But in much of the world, there is little help for people suffering from persistent symptoms, advocates said.
In one of Mexico’s longstanding Covid advocacy groups, the Colectivo Covid Persistente México, patients are considering what legal action might force change, while seeking recognition, new public policies and care protocols.
“The progress has been minimal, some institutions have listened halfway, others reluctantly confirm that they will do everything possible to help, but from above there is still not the slightest recognition,” Medina said in a text.
Although a Mexican senator, Ruth Alejandra López Hernández, sent a letter asking the Ministry of Health to do more, she represents the exception to the general response, Medina said.
Politicians, like the general public, are tired of pandemic calculations.
“Everyone is so sick and tired of Covid,” said Ann Li, who heads the Belgian Covid group Post-Covid Gemeenschap. “There is a lot of work to do. But there is no time and I can’t find any volunteers who can help me”.