While governments lifted restrictions and international attention moved elsewhere after some declared victory over the initial, acute phase of the Covid-19 pandemic, a significant portion of Covid-19 survivors continued to battle debilitating symptoms that had no name, no recognition, and no clear path to treatment.
Dr. Jane Achan, a pediatrician and Principal Advisor at Malaria Consortium who oversees research across Africa and Southeast Asia, recognized early that the pandemic’s impact would extend far beyond the acute illness. Her groundbreaking research into Long Covid in Africa would reveal a hidden health crisis of staggering proportions – one that has largely been ignored.
The Forgotten Patients
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“We recognized that people did not move on. There were a number of people who remained unwell and reported significant changes in their daily living, but also significant changes in their health status after an episode of acute Covid-19,” Dr. Achan observed in 2022, as she launched what would become the largest study of Long Covid on the African continent.
While literature emerged about long-term Covid complications in the Global North, “there was no data coming out from Africa yet again”. This gap prompted Dr. Achan’s team to investigate what she calls “this new phenomenon, or new emerging global health challenge, in the context of Africa”.
The World Health Organization defines Long Covid as a condition that typically involves symptoms beginning within three months of a Covid-19 infection, persisting for at least two months, and cannot be attributed to any other medical explanation. Globally, studies suggest it may affect 6 in every 100 people, with prevalence estimates ranging from 6% to 11% among adults infected with the virus.
A Staggering Discovery
The results of Dr. Achan’s comprehensive study across Uganda and Ethiopia – following 4,800 participants, half of whom had recovered from Covid-19 – revealed a crisis hiding in plain sight.
“We found, on average, about 67% of individuals who had had Covid-19 remained unwell in one way or the other,” Dr. Achan said. “In a significant proportion of them, they are still unwell two to three years after the acute illness.”
These weren’t vague complaints captured through casual phone surveys. “We had clinical assessments of these patients. So it was not a phone interview. This was a physical interaction between a clinician and the patient,” she said. “So we believe that this is a true status of the burden of Long Covid in the communities we work.”
The burden Dr. Achan’s team documented, affecting two-thirds of Covid survivors, far exceeds global estimates, suggesting that Long Covid may be particularly severe in malaria-endemic regions.
The Complexity of Overlapping Diseases
In regions where malaria is prevalent, Long Covid presents unique challenges. Both conditions share overlapping symptoms, including fatigue, fever, and neurological disturbances, creating diagnostic complexity that further complicates patient care.
“We wanted to see if prior malaria exposure still played a role in Long Covid symptoms,” Dr. Achan said about her team’s research design. Ethiopia and Uganda were strategically selected for their different malaria transmission intensities. Uganda represents a high-burden setting and Ethiopia a relatively lower-burden context, allowing researchers to examine how malaria prevalence might influence long-term outcomes of surviving Covid-19.
The study’s rigor was also intentional. Dr. Achan’s team used “a really systematic approach to the diagnosis” with “a tool that we use that was informed by other Long Covid illness, I mean, studies, especially in the north, and had also been agreed upon by different Long Covid working groups.”
The Diagnostic Desert
Perhaps most troubling was the complete absence of recognition within existing healthcare systems. “Many times, the patients reported that even the prior history of acute illness was never solicited by the healthcare providers,” Dr. Achan said. The implications were devastating: “Many of the patients received their first diagnosis in the context of this study, despite the fact that they’ve been unwell for so long.”
The diagnostic challenges extended beyond simple oversight. “There are no diagnostic guidelines. The clinic evaluation does not recognize the previous illness with Covid-19,” she said. “Even in our attempt to disseminate the findings, some physicians do not believe that some of the symptoms could be attributed to Covid.”
This lack of recognition is particularly problematic given the wide array of symptoms associated with Long Covid, which can include persistent chest pain or tightness, persistent cough, fatigue, blood clots, muscle pain and joint aches, digestive issues, depression, changes in or loss of taste and smell, hair loss, gastrointestinal issues, loss of lung function, sleep disturbances, and skin rashes.
The Burden of Disbelief
The dismissal of symptoms created an additional layer of suffering for patients already struggling with mysterious ailments. Dr. Achan recounts one particularly telling interaction during a research dissemination session: “The physician asked us, what’s fatigue in an African patient, or an African, we are always in the gardens. We are always working very hard.”
Such attitudes meant that “a lot of the symptomatology were not believed, and that created a lot of frustration”. The psychological toll was immense, as patients found themselves questioning their own experiences while battling debilitating symptoms that medical professionals refused to acknowledge.
Dr. Achan recognized the importance of capturing not just the statistics but the lived experience. During one dissemination panel, a patient participant emphasized that while numbers were important, what truly mattered was “the qualitative description of what fatigue feels like to that one patient.” The patient’s request was clear: “Please, in your dissemination, add these vivid descriptions of what a patient with fatigue feels like, so that whoever is listening believes that it’s really a huge problem. I can’t wake up. I can’t lift up my hand.”
Healthcare System Failures
The challenge isn’t just recognition – it’s access to appropriate care. While Uganda and Ethiopia have public health facilities and community-based services, Long Covid presents unique obstacles.
“The challenge that the individuals had was having to access care at multiple points,” she said. “Because they don’t have a singular comment, an individual would have to go to four different clinics within a facility, many times running on four different days to be able to get care for the complaints they have.”
The fragmented approach to care created additional burdens for patients already struggling with energy and mobility issues. “Whereas the general public health care is available, I think that in the context of Long Covid where an individual has chronic multiple conditions. The biggest challenge that these patients had was having to go to many places to be able to have a holistic assessment of their complaints.”
Mental Health Crisis
Among the most concerning findings was the overwhelming mental health burden. “Mental health issues came up highly,” Dr. Achan said, “… it’s not a one-time referral, it’s a linkage to long-term care.”
The mental health challenges stemmed not only from the physical symptoms but from the isolation and disbelief patients encountered. “Some of the participants really felt that they had been neglected. They mentioned that the world moved on after the pandemic slowed down,” Dr. Achan said.
Access to mental healthcare, already limited across the African continent, became a critical gap that the research team had to address. “Access to mental health care is not very easy in the African continent. And I think why I mentioned that particularly because there really needs to be some changes in their approach to mental health care provision for that large population to be managed.”
People living with Long Covid often report worse physical health and mental well-being than those who did not develop the condition, with persistent symptoms potentially leading to disability and reduced work capacity.
The World Moves On
Malaria Consortium’s research reveals a fundamental disconnect between global pandemic narratives and local realities. “The biggest surprise in the context of the second study is how the world quickly moved on and actually forgot that there was an additional health care need that was created even after the pandemic ended,” Dr Achan said.
The lack of services for Long Covid sufferers represents what Dr. Achan calls “this hidden health burden” – a population of millions whose suffering became invisible as global attention shifted elsewhere. Despite the WHO declaring an end to the acute Covid-19 pandemic in May 2023, the chronic aftereffects continue to plague survivors worldwide.
Building Response and Recognition
Following the research findings, various organizations and regional bodies have begun responding to the crisis. “They’ve made recommendations around, particularly their approach in their settings, what they’ve been able to do in terms of modifications, of setup of new clinics to assess different components of Long Covid,” Dr. Achan said. “They’ve also particularly emphasized having patient groups, platforms where patients share experiences and also share coping mechanisms.”
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The Africa CDC has shown particular interest in the findings. “They’ve also encouraged us to ensure that our findings fit into any guidelines that are being developed, both at the national level, but also globally with WHO and regionally with Africa CDC,” Dr. Achan said. “They weren’t aware that we were conducting this study, and they were actually quite happy that we had significant and quite diverse data for the African continent that would fit within some of the guidelines they’ll be developing.”
A Call for Recognition
As healthcare systems and governments focus on other priorities, Dr. Achan’s research serves as an urgent reminder of unfinished business. “The healthcare challenges did not end with a pandemic,” she emphasizes. “There are a number of individuals still suffering with long-term complications of Covid-19.”
Her work is now focused on ensuring that this population doesn’t remain forgotten. The research team is “engaging with the Ministries of Health, engaging with different Long Covid working groups, but also engaging with the patient population, just to ensure that there’s increased visibility and recognition of this healthcare need”.
The path forward requires fundamental changes in healthcare delivery, diagnostic protocols, and perhaps most importantly, attitudes toward patient experiences. “We need to recognize this population, and we need to support this population in terms of, you know, ensuring that one, they are optimally diagnosed, but also that they achieve the support and the healthcare that they require to be able to live normal lives.”
Malaria Consortium’s research reveals global health inequalities and offers ways to address them, and while Dr. Achan and her team found the main pandemic has eased, millions of Africans still face health problems, especially in areas where malaria is common and the burden seems very high.
“I think for me, it’s really a call for the recognition of this hidden health burden.”
There is no cure for Long Covid yet, and although scientists on the continent are on the road to diagnosis and treatment, doctors don’t fully understand what it is, creating ongoing problems for healthcare systems worldwide. In Africa, addressing existing diseases, as well as emerging conditions like Long Covid after the pandemic, means multiple health challenges need more attention and action.
