By Joke Kujenya
STRUGGLING WITH an undiagnosed condition for years, 48-year-old Adewale Ojo recounts how he faced relentless pain, fatigue, and uncertainty to JKNewsMedia.
He said while doctors dismissed his symptoms as stress-related, his health deteriorated.
It was not until last year that he was diagnosed with a rare autoimmune disorder—one of the thousands of rare diseases classified under the International Classification of Diseases (ICD-11).
While the diagnosis brought clarity, it also exposed gaps in Nigeria’s healthcare system, where rare diseases often go unnoticed due to limited medical coding and recognition.
Data Gaps in Nigeria’s Health System
The International Classification of Diseases (ICD) serves as a universal system for recording and reporting diseases.
It ensures that health conditions are comparable across countries, improving data sharing and medical decision-making. ICD-11, the latest revision by the World Health Organization (WHO), includes over 5,500 rare diseases and their synonyms.
These classifications allow healthcare professionals to diagnose, treat, and track illnesses more effectively.
However, in many low- and middle-income countries, the adoption of ICD-11 remains slow, leaving patients like Adewale in a medical limbo.
Nigeria, like several other nations, still operates largely on ICD-10, limiting access to accurate documentation and treatment plans for those with rare conditions.
Few health experts consulted were unable to share knowledge on the ICD-10 and not even aware of the latest version ICD-11.
Moreover, the World Health Organisation (WHO) cautions that failure to transition to ICD-11 hampers disease surveillance, misrepresents national health statistics, and delays critical research on rare diseases.
The Cost of Delayed Implementation in Numbers
According to WHO, ICD-11 took effect globally on January 1, 2022, replacing ICD-10, which was discontinued in 2018.
However, a data analysis of health system reports from Nigeria’s National Health Management Information System (NHMIS) indicates that less than 15% of health facilities have made any modifications to align with ICD-11 standards.
Meanwhile, in countries that have adopted ICD-11, rare disease reporting accuracy has improved by 42%, leading to more targeted research and funding.
Health economists also estimate that Nigeria’s continued reliance on ICD-10 skews national disease burden estimates, potentially misallocating healthcare funding by up to 30% annually.
Without proper disease classification, thousands of Nigerians with rare conditions remain statistically invisible, complicating efforts to develop policies that address their needs.
Dr. Emeka Onyekwere, a medical consultant in Abuja, emphasized that updating Nigeria’s health records system to ICD-11 is crucial.
“Without proper disease classification, patients with rare conditions are often overlooked,” he said.
“ICD-11 offers a structured way to track rare diseases and improve access to targeted therapies, he also added”
WHO Upholds ICD-11 as Key to Global Health Data Standards
According to WHO, while countries are not penalized for late adoption of ICD-11, delaying implementation means missing out on improved interoperability, enhanced health surveillance, and updated emergency response strategies.
The agency notes that many advanced health systems, including those in Europe and North America, have already integrated ICD-11, using its digital-friendly design to streamline patient care and research.
Meanwhile, Nigeria’s Ministry of Health acknowledges the importance of ICD-11 but cites logistical and technical barriers to its full adoption.
“Transitioning requires training healthcare providers, upgrading hospital software, and aligning insurance claims with the new system,” said an official from the National Health Management Information System (NHMIS). “We are making progress, but it will take time,” he noted.
WHO adds that globally, ICD-11 aligns with modern healthcare needs, enabling doctors, researchers, policymakers, and insurers to work with precise health data.
It provides a Unique Identifier (URI) for every rare disease, ensuring that even the most uncommon conditions are recognised in medical documentation.
The WHO also discloses that it has made ICD-11 freely accessible, allowing countries to integrate it into their systems without licensing fees.
Success Stories on ICD-11
A report from the Global Rare Diseases Registry Initiative shows that countries transitioning to ICD-11 experience a 30-50% increase in recorded rare disease cases, leading to better funding allocation and treatment accessibility.
Additionally, data from the Global Burden of Disease Study indicates that rare diseases contribute to over 15% of disability-adjusted life years (DALYs) in low-income countries, underscoring the need for improved classification and tracking.
This implies that for Adewale and others living with rare diseases, an effective classification system could mean better access to specialised treatment, research trials, and healthcare funding.
“Living with a rare disease is hard enough. We need a system that acknowledges our struggles,” the NHMIS said. “ICD-11 might be the key to changing that.”
The official also assures JKNewsMedia that the push for Nigeria’s transition to ICD-11 continues as several health experts are currently urging policymakers to prioritize its adoption.
He adds that as global health systems move forward, ensuring that every patient—regardless of how rare their condition is—receives proper recognition and care remains a critical goal, as such Nigeria cannot afford to be lagging behind.
