Since the earliest days of the pandemic, members of disability and chronic illness communities have warned that Covid-19 could be a mass-disabling event. Yet media stories and policy decisions have continued to focus on hospitalizations and deaths, largely ignoring “long Covid” – the patient-preferred term for the long-term symptoms that some patients have experienced following what can begin as a mild Covid infection. Pharmaceutical companies, health agencies and governments are confident that vaccines can decrease hospitalization and death rates, eventually ending the pandemic. But few are discussing long Covid within the context of vaccines or the pandemic’s resolution. Those of us who have experienced the long-term symptoms of Covid-19 find ourselves erased from the narrative once again, and wondering: can the vaccine prevent long Covid, and to what extent?
Discussions of Covid vaccine efficacy have focused on the vaccine’s ability to prevent severe illness, death and hospitalization. On 24 February, the New York Times reported that the Johnson & Johnson vaccine “strongly protects against severe illness”. Earlier this week, the Times’ David Leonhardt wrote of J&J’s vaccine: “The picture is murkier for mild cases, but they are not particularly worrisome.” (Full disclosure: I work part-time as a video producer for a Covid news show produced by Johnson & Johnson. The show is currently on hold and my involvement has been fairly minimal since December.) The Centers for Disease Control and Prevention website states that the Pfizer-BioNTech vaccine appears to protect against “more serious outcomes” such as hospitalization or death. In a recent New York Times op-ed, the Georgetown University virologist Dr Angela Rasmussen explains that the purpose of the vaccines “is to prevent death and serious health complications that strain our overburdened healthcare system. This is undeniably good news, but it does not account for long-term outcomes from asymptomatic or mild infections.
A recent study from the University of Washington found that 30% of Covid patients surveyed still had persistent symptoms at nine months. The study is unique in that a majority of the patients surveyed (84.7%) “were outpatients with mild illness” as compared with past studies that have focused only on hospitalized patients. “Our research indicates that the health consequences of Covid-19 extend far beyond acute infection, even among those who experience mild illness,” the University of Washington researchers write.
Paola Garcia, 39, in New York, told me that her initial Covid symptoms mimicked those of a mild cold or flu; she dealt with a low fever, fatigue and mild shortness of breath, among other initially manageable issues. But those symptoms never went away. Garcia got sick on 20 March last year, and in addition to the symptoms she experienced at first, she has developed more serious symptoms, such as tremors, pericarditis, temperature dysregulation, hair loss, weight loss, nausea, fatigue and cognitive functioning issues.
Garcia is one of many long Covid patients who recall the early days of their virus as initially mild. Donn Seidholz, 67, in Omaha, told me that he tested positive for Covid-19 on 12 August after experiencing migraines, fatigue, brain fog, loss of taste and smell, and a racing heart. Seven months later, he still has not regained his sense of smell or taste, says his brain fog has become “debilitating” and reports ongoing and intermittent fatigue. Seidholz’s experience is common to many long Covid patients, and in some cases, mild symptoms can even lead to death.
Given the lasting potential impact of a mild Covid infection, the conversation around vaccine efficacy must consider whether the vaccine can prevent mild disease and infection. That being said, when trying to determine the prevalence of long Covid among non-severe cases, it is important to distinguish between non-hospitalized or “outpatient” cases and patients with initially “mild” symptoms. While some Covid patients weren’t hospitalized because their symptoms were mild, others were turned away due to overwhelmed healthcare systems, medical bias, or both.
“My symptoms were not mild,” says Leigh W Jerome, who sought care for Covid in New York in March and was sent home without a PCR test or medication. “I was told that in normal times I would be admitted, but these were not normal times.” She went on to develop bilateral pneumonia the following week, but remained untreated until September, when she began connecting with clinicians who had been recommended by other long Covid patients in the support group I run.
Because long Covid is new and widespread awareness is still limited, it’s unsurprising that discussions about vaccine efficacy and the pandemic’s resolution are failing to consider long-term illness and disability. But there are scientific and historical precedents for the idea that viruses can have long-term effects, and in some past disease outbreaks, these outcomes have been considered more seriously.
During the race to the polio vaccine in 1954, disability was front and center in conversations about ending the outbreak. “There was a lot of demand for the vaccine from parents who were concerned that their children would get polio and be paralyzed,” explains Dr René Najera, an associate in the epidemiology department at the Johns Hopkins Bloomberg School of Public Health, who runs the History of Vaccines project at the College of Physicians in Philadelphia.
Polio disables less than 1% of the population it infects, but Dr Najera says that the virus’s impact on children – coupled with President Franklin Delano Roosevelt’s well-known polio disability – caused widespread public concern. The scientists developing the vaccine understood these fears, and the vaccine’s efficacy was measured by looking at severe polio cases in children and determining whether the patient in question had been vaccinated for the virus before being infected.
“There was no lab test for polio per se,” Dr Najera told me. Unlike Covid-19, polio patients rarely received a diagnosis before experiencing severe symptoms and paralyzation. “They were not catching the asymptomatic, the less sick,” Dr Najera said of the early polio vaccine trials. The Sars-Cov-2 virus poses a slightly trickier conundrum, since Covid cases that are initially diagnosed as mild can still have long-term or disabling effects. Long Covid also appears to be more common than polio paralysis. The University of Washington estimate of 30% has been cited by the National Institutes of Health, but rates may be even higher since there have been no attempts to estimate long Covid prevalence beyond individual studies.
“It’s going to be a while before we see completely the picture of Covid in the population,” says Dr Najera.
Because no governments are tracking long Covid along with rates of infections, death and hospitalization, it will be hard to measure how much these numbers decrease after more people are vaccinated. That being said, emerging research from Israel indicates that Covid vaccines could prevent both infection and disease, which scientists refer to as “sterilizing immunity”. If vaccines can prevent infection, they can prevent mild cases and thus long Covid. Unfortunately, the Israeli findings are still new, and it is important to note that while infection rates in Israel have declined since vaccination began, infection rates there are still higher than they were in November, and scientists disagree on whether Israel can provide evidence of the vaccine’s effectiveness against new Covid variants.
The polio vaccine was hugely effective at preventing disability, death and eventually eradicating the virus from most of the world. (Polio still exists in Nigeria, Pakistan and Afghanistan, due in part to CIA actions that caused vaccine hesitancy among local populations), and the Covid vaccines will have an undeniable impact on our current pandemic, regardless of whether they provide sterilizing immunity. If the vaccines can provide sterilizing immunity, we may be looking at our last wave of long Covid patients.
In the meantime, we cannot ignore the potential long-term impact of mild Covid cases. We need more research into whether the vaccine can prevent mild disease and infection entirely; until then, public health guidelines must consider mild infections as a potential threat to society and the economy. A study from the Patient-Led Research Collaborative that surveyed almost 4,000 long Covid patients who became sick in the first waves of the pandemic, found that most still have not been able to make a full return to work, and many are struggling to access necessary disability benefits. Just as clinicians and employers should not write off patients with initially mild cases who report debilitating long-term symptoms, the media and policymakers should not write off mild cases as having no effect on society or human health.
Furthermore, we must consider long Covid in the vaccine rollout and in discussions about the pandemic’s end. Early anecdotes from long Covid patients who have received the vaccine demonstrate that responses may be varied, with some patients reporting an alleviation of symptoms and others experiencing more intense side-effects. These reactions need to be studied, understood, and recommendations about the vaccine need to take long Covid patients into account.
Finally, we must become vigilant about how we discuss and plan for “the end” of the pandemic, understanding that some people may continue to experience long-term impacts of the virus for decades to come. Increased awareness about long Covid should provide solutions not just to that patient population but to everyone who has struggled with a “mysterious illness” and all those whose needs are not being met by the disability benefits system in this country.