sSince the early days of the pandemic, members of communities with disabilities and chronic illnesses have warned that Covid-19 could be a mass disable event. Still, media stories and political decisions continued to focus on hospitalizations and deaths, largely ignoring “Long Covid” – the patient’s preferred term for the long-term symptoms that some patients experienced after what may start out as an infection. Covid’s lightweight. Pharmaceutical companies, health agencies and governments are confident that vaccines can lower hospitalization and mortality rates, ending the pandemic. But few are discussing the long Covid in the context of vaccines or pandemic resolution. Those of us who experienced the long-term symptoms of Covid-19 ended up wiped out of the narrative again, and wondering: can the vaccine prevent Covid long, and to what extent?
Discussions about the effectiveness of the Covid vaccine focused on the vaccine’s ability to prevent serious illness, death and hospitalization. On February 24, the New York Times reported that the Johnson & Johnson vaccine “strongly protects against serious illnesses”. Earlier this week, David Leonhardt of the Times wrote about the J&J vaccine: “The picture is darker for mild cases, but they are not particularly worrying.” (Full disclosure: part-time work as a video producer for a Covid news program produced by Johnson & Johnson. The program is currently on hold and my involvement has been minimal since December.) The Center for Disease Control and Prevention website says the Pfizer-BioNTech vaccine appears to protect against “more serious outcomes”, such as hospitalization or death. In a recent New York Times opinion piece, Georgetown University virologist, Dr. Angela Rasmussen, explains that the goal of vaccines “is to prevent death and serious health complications that overwhelm our overworked health system. This is undeniably good news, but it does not take into account the long-term results of asymptomatic or mild infections.
A recent University of Washington study found that 30% of Covid patients surveyed still had persistent symptoms at nine months. The study is the only one that the majority of patients surveyed (84.7%) “were outpatients with mild illness”, compared to previous studies that focused only on hospitalized patients. “Our research indicates that the health consequences of Covid-19 go far beyond acute infection, even among those with mild illnesses,” wrote researchers at the University of Washington.
Paola Garcia, 39, in New York, told me that her initial symptoms of Covid were similar to those of a mild cold or flu; she had low fever, fatigue and slight shortness of breath, among other initially controllable problems. But these symptoms never went away. Garcia fell ill on March 20 of last year and, in addition to the symptoms he felt at the beginning, developed more serious symptoms, such as tremors, pericarditis, temperature dysfunction, hair loss, weight loss, nausea, fatigue and cognitive functioning problems. .
Garcia is one of Covid’s many long-term patients who remembers the early days of his virus as initially mild. Donn Seidholz, 67, in Omaha, told me that he tested positive for Covid-19 on August 12, after experiencing migraines, fatigue, brain fog, loss of taste and smell and a racing heart. Seven months later, he still has not recovered his sense of smell or taste, says that the fog in his brain has become “debilitating” and reports continuous and intermittent fatigue. Seidholz’s experience is common to many long-term patients with Covid and, in some cases, mild symptoms can even lead to death.
Given the potentially lasting impact of a mild Covid infection, the discussion of the vaccine’s effectiveness should consider whether the vaccine can prevent diseases and mild infections. That 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 patients at Covid were not hospitalized because their symptoms were mild, others were declined due to overworked health systems, medical prejudice or both.
“My symptoms were not mild,” said 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 developed bilateral pneumonia the following week, but remained untreated until September, when she started to connect with doctors who had been recommended by other long-term Covid patients in the support group I manage.
Since the long Covid is new and widespread knowledge is still limited, it is not surprising that discussions about vaccine effectiveness and pandemic resolution are not taking long-term illnesses and disabilities into account. But there are scientific and historical precedents for the idea that viruses can have long-term effects, and in some previous disease outbreaks, these results were taken more seriously.
During the 1954 race for polio vaccine, disability was at the center of 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 directs the Children’s History Project. Vaccines at the College of Physicians in Philadelphia.
Polio deactivates less than 1% of the infected population, but Dr. Najera says the impact of the virus on children – along with President Franklin Delano Roosevelt’s well-known polio deficiency – has caused great public concern. The scientists who developed the vaccine understood these fears, and the vaccine’s effectiveness was measured by analyzing severe cases of polio in children and determining whether the patient in question had been vaccinated against the virus before being infected.
“There was no laboratory test for the polio itself,” Dr. Najera told me. Unlike Covid-19, polio patients rarely receive a diagnosis before experiencing severe symptoms and paralysis. “They weren’t getting asymptomatic, the least sick,” said Dr. Najera of the first polio vaccine tests. The Sars-Cov-2 virus presents a slightly more complicated puzzle, as cases of Covid 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’s estimate of 30% was quoted by the National Institutes of Health, but the rates may be even higher, as there have been no attempts to estimate the prevalence of long Covid beyond individual studies.
“It will be a while before we fully see Covid’s image in the population,” says Dr. Najera.
Since no government has been monitoring Covid for a long time along with infection, death and hospitalization rates, it will be difficult to measure how much these numbers drop after more people are vaccinated. That said, emerging research from Israel indicates that Covid vaccines can prevent infections and diseases, which scientists call “sterilizing immunity”. If vaccines can prevent infection, they can prevent mild cases and, therefore, long Covid. Unfortunately, Israeli discoveries are still new and it is important to note that although infection rates in Israel have decreased since the vaccination began, infection rates are still higher than in November, and scientists disagree about whether Israel can provide evidence of the vaccine’s effectiveness against new Covid variants.
The polio vaccine was extremely effective in preventing disability, death and, ultimately, in eradicating the virus in most parts of the world. (Polio still exists in Nigeria, Pakistan and Afghanistan, partly due to CIA actions that caused vaccination hesitation among local populations), and Covid’s vaccines will have an undeniable impact on our current pandemic, regardless of whether they provide sterilizing immunity. If vaccines can provide sterilizing immunity, we may be looking at our last batch of long Covid patients.
In the meantime, we cannot ignore the potential long-term impact of Covid’s mild cases. We need more research to find out if the vaccine can prevent minor illnesses and infections entirely; until then, public health guidelines should regard mild infections as a potential threat to society and the economy. A study by the Patient-Led Research Collaborative that surveyed nearly 4,000 long Covid patients who fell ill in the first waves of the pandemic, found that most have yet to fully return to work and many are struggling to gain access to the necessary disabled benefits. Just as doctors and employers should not rule out patients with initially mild cases that report long-term debilitating symptoms, the media and lawmakers should not rule out mild cases as having no effect on society or human health.
In addition, we should consider the long Covid in launching the vaccine and in discussions about ending the pandemic. Initial anecdotes from long Covid patients who received the vaccine demonstrate that responses can vary, with some patients reporting a relief of symptoms and others experiencing more intense side effects. These reactions need to be studied, understood, and vaccine recommendations should take patients with Covid into account for a long time.
Finally, we must be vigilant about how to discuss and plan the “end” of the pandemic, understanding that some people may continue to suffer long-term impacts from the virus in the coming decades. Increased awareness of the long Covid should provide solutions not only for this patient population, but for everyone who has struggled with a “mysterious illness” and everyone whose needs are not being met by the disability benefits system in this country.