Hidden disability: The quiet struggle with Long Covid in Kenya

Despite its global reach, Long Covid is widely underreported in Africa due to a lack of awareness of the condition, inadequate clinical data, and limited access to health care. The impact on the African continent remains largely obscured by a veil of silence and neglect. In a region already burdened by health challenges, including infectious diseases, poverty, and limited healthcare resources, the added strain of sequelae of SARS-CoV-2 infection magnifies these existing vulnerabilities.

In Kenya, the complexities of Long Covid present a daunting challenge for patients and healthcare providers alike, mirroring the broader struggles faced across the continent. This situation serves as a stark reminder of the urgent need for heightened awareness, bolstered resources, and targeted support to tackle the multifaceted issues surrounding Long Covid. 

“Battling Long Covid in Kenya is like living with a disability that no one knows about,” said Diana Wanjiku, an insurance agent from Kiambu County, who has lived with the disease since spring 2021. 

Long Covid is understudied and underreported in Africa

While the pandemic has impacted populations from all continents, there is a significant gap in knowledge about Covid-19 on the African continent. Not only is the prevalence of contagious disease poorly understood, but it’s also often ignored by healthcare providers and the wider public.

One factor driving the lack of understanding of Covid-19 in Africa is the continent’s longstanding struggle with inadequate healthcare resources and infrastructure. According to the latest updates from Africa CDC, as of early April 2024, only 51.8% of the African population is fully vaccinated against Covid-19. Immediate healthcare needs often take precedence over studying and addressing Long Covid, leading to its invisibility.

“By the time I was seeking information on Long Covid, most of the doctors had no idea” about the disease, said Samuel, a Kenyan with Long Covid (who asked to be referred to by his first name). He later found a Long Covid support group on Facebook that helped him understand the disease and take steps to improve his symptoms, such as changing his diet to help with Mast Cell Activation Syndrome, a common condition that can be triggered by Covid-19. 

In a recent report published by Open Research Africa discussing disparities in Covid-19 research funding and leadership, scientists revealed that the majority of Long Covid research in Africa is primarily financed and overseen by foreign nations. The report’s authors analyzed projects documented in a global database tracking funded Covid-19 research projects.

Out of a staggering 17,995 research projects cataloged in the Tracker as of July 2022, only 786 were carried out in African countries. Noteworthy contributors to Covid-19 research efforts on the continent included Morocco, with 183 projects, South Africa with 128 projects, and Kenya with 91 projects. In total, 75 research funders representing 17 countries directed USD $267 million to Covid-19 research in Africa.

But the funders of these projects were predominantly public or governmental organizations from Europe and the U.S. Institutions such as the National Center for Scientific and Technical Research and UK Research and Innovation led the charge. While the bulk of funding stemmed from international entities, nine funders based in Africa also contributed to the cause. 

This imbalance in research investments poses a challenge for African scientists, as local research needs may differ from external agendas. The lack of sufficient evidence produced within and in the context of Africa worsens the marginalization of Long Covid in the region and weakens attempts to advocate for its acknowledgment and management.

Systemic disparities amplify data challenges

Systemic challenges, such as inconsistent reporting mechanisms and socioeconomic disparities, hinder accurate data collection on Covid-19 and make it difficult for researchers to assess the extent of Long Covid in Africa.

A systematic review and meta-analysis, published in Scientific Reports in December 2023, revealed a nearly 50% prevalence of Long Covid in Africa months after Covid-19 infection. Fatigue, cognitive impairment, post-traumatic stress disorder, and poor quality of life were commonly reported manifestations of the disease. The study’s authors analyzed 25 observational studies, involving a total of about 29,000 infected African patients. Nearly half of the studies originated from Egypt and about 60% of the participants were female.

“A number of people said it impacted their occupation and they either had to change jobs or had to take a role with lesser responsibilities because of the symptoms,”  lead author Waasila Jassat, a public health specialist at South Africa’s National Institute for Communicable Diseases, told Nature in December.

The study’s authors also said this was likely the first meta-analysis exploring the prevalence, risk factors and symptomatology of Long Covid in Africa. The researchers also identified challenges in estimating Long Covid incidence in low-income countries: for example, asymptomatic cases can represent hidden infections and testing can be difficult to access.

Socioeconomic factors across the continent further exacerbate the situation, as poverty, informal employment — which affects the number of people that can afford health insurance — and cultural stigmatization of illness impede access to healthcare and support services for managing Long Covid.

Researchers at Aga Khan Hospital in Nairobi are working to address these challenges through ongoing research aimed at understanding Long Covid specifically within Kenya. “By focusing our research efforts on Long Covid within Kenya, we aim to generate crucial insights that not only benefit our local communities but also contribute to the broader understanding of this complex health condition across Africa,” said Lucy Bobo, a researcher at the hospital.

“Limited media coverage exacerbates the issue,” Wanjiku said, the insurance agent in Kiambu who has had Long Covid since 2021. “If the media had more coverage on Long Covid, particularly in Africa, a lot of patients would understand their symptoms and better manage them.”

Samuel, also living with Long Covid, expressed his hope for a long-term solution through research. “It would be great to have a clear path to recovery to reduce the mental stress that comes with the uncertainty of Long Covid,” he said.

A long journey of strife and self-dependence

Even when Kenyans recognize they have Long Covid, healthcare is difficult to access. According to the National Council For Population and Development, unregistered workers, or those whose work lacks social and legal protections and employment benefits, represent 83.3% of the total Kenyan workforce.

Unfortunately, few unregistered workers opt into the government’s National Hospital Insurance Fund and only 2% of all workers carry private health insurance, primarily accessible to those who have formal employment. Many people in Kenya are unaware of the existence and importance of health insurance.

Many of Kenya’s low-income workers are largely uninsured, particularly for outpatient services. When these Kenyans access healthcare through the private sector, they pay out-of-pocket. If one family member suffers from a major illness, their entire family may be exposed to poverty.

“Public insurance does not adequately cater to expenses such as supplements and expensive medical procedures essential for managing Long Covid,” said Titus Chege, a public health practitioner based in Nairobi who has paid for testing and rehabilitation programs. “I had to get additional private insurance to cover my spouse and me because the public insurance is insufficient to cover Long Covid medical expenses. This situation exacerbates the plight of financially disadvantaged individuals experiencing Long Covid, who struggle to access comprehensive medication under the existing healthcare system in Kenya,” he added.

Wanjiku continues to struggle from bronchitis and chronic fatigue, making daily tasks burdensome. Working from home saved her from losing her job, she said, but her struggle with bronchitis in 2022 heightened her lung sensitivity to dust and cold, requiring two months of treatment.

“I’ve had periods of depression from constantly worrying about my health and my ability to support my family,” Wanjiku said. She would like to see increased access to affordable healthcare, specialized treatment options for Long Covid, and financial assistance for individuals coping with the long-term effects of COVID-19. Additionally, she hopes for greater recognition and support from both the government and the international community to address the unique challenges faced by people living with the disease.

“I urge researchers and policymakers to prioritize the development of effective treatments and interventions for long-haulers, while also ensuring equitable access to these resources for all those in need,” she said.

Jael Bore is a journalist based in Nairobi, Kenya with a passion for shedding light on pressing issues affecting communities worldwide. Specializing in healthcare and social justice reporting, she brings a nuanced understanding of complex topics and a dedication to amplifying diverse voices. Find her on LinkedIn here.

All articles by The Sick Times are available for other outlets to republish free of charge. We request that you credit us and link back to our website.