Abstract
Multiple sclerosis (MS) is a chronic, debilitating condition affecting many African people. However, the management of MS in Africa is often inadequate, and there is a need to improve the care and support provided to patients. This paper aims to identify the challenges and opportunities in navigating the journey of MS management in Africa. MS management’s main challenges in Africa include a lack of awareness and education about the disease, limited access to diagnostic tools and treatments, and inadequate care coordination. However, by increasing awareness and education about MS, improving access to diagnostic tools and treatments, fostering multidisciplinary collaborations, encouraging and supporting research on MS in Africa, and collaborating with regional and international organizations to share knowledge and resources, it is possible to improve the management of the disease and improve the lives of those affected by MS in Africa. This paper concludes that improving the management of MS in Africa requires a concerted effort from all stakeholders, including healthcare professionals, policymakers, and international organizations. Collaboration and sharing of knowledge and resources are crucial to ensure that patients receive the best possible care and support.
Keywords: Africa, multiple sclerosis, neurology
Introduction
Highlights
Access to neuroimmunology comes with significant challenges in Africa.
The diagnostic and treatment barriers for neuroimmunology in Africa face obstacles.
Addressing them will require a multidisciplinary approach.
Multiple sclerosis (MS) is an autoimmune disease that affects the central nervous system and is characterized by multiple demyelinating lesions of neurons1. It is a major global health concern and is a subject of ongoing research and studies. As of 2016, the global prevalence of MS was estimated to be 2 221 188 cases2. High-income regions of North America, Western Europe, and Australasia had the highest age-standardized prevalence rates per 100 000 population, while the lowest rates were observed in eastern sub-Saharan Africa, central sub-Saharan Africa, and Oceania2. Historically, it was believed that MS had a low incidence in Africa, potentially due to a lack of genetic and environmental risk factors and limited diagnostic tools, such as MRI. However, recent trends suggest that the incidence of MS is increasing in Africa2. MS is estimated to affect around one to two per 1000 people in Africa, which is lower than in other regions, but the numbers are rising2. The impact of MS on the quality of life of patients and their families is significant, and the economic burden on society is also high.
Generally, access to healthcare in Africa is challenging, mainly due to inadequate funding. The cost of diagnosing and managing MS is often prohibitive for the average African, making it difficult for patients to receive appropriate care3. Also, MS treatment is long-term and multidisciplinary, which can be challenging to achieve and maintain in most African countries. Access to newer treatment options is also limited, and most of the available treatment options are not affordable for most patients. Furthermore, research is scarce on the epidemiology, disease course, treatment outcomes, and drug development of MS in Africa4.
This review aims to overview the epidemiology and management of MS in Africa as it currently stands. The objectives of this review are to provide an understanding of the current state of care for MS patients in Africa, to identify the challenges affecting optimal care, and to suggest ways to improve access to care.
Epidemiology of multiple sclerosis in Africa
MS is a rare neurological disorder that primarily affects African Americans, Asians, and Hispanics and is also more common in women than in men5. Despite the predilection for certain populations, MS is seen across every population globally5. Research on MS in Africa began in 1967. In the early years (i.e. 1960–1999), the majority of studies focused on determining the general incidence and prevalence of the disorder, the potential impact of migration on its rising incidence and prevalence in western countries, and its incidence in specific ethnic groups, such as African Americans5,6. Since the 2000s, most studies on MS in Africa have shifted their focus to understanding the epidemiology, pathology, and etiology of the disorder, as well as reviewing its current state on the continent6–8. However, the incidence and prevalence of MS in Africa are poorly documented, with most estimates based on case–control studies, cross-sectional studies, and retrospective cohort analyses conducted in hospitals9. The majority of these studies were conducted in South Africa, where the first case of MS in Africa was documented in 196710.
In 1967, Dean conducted the first retrospective cohort study in Africa to examine the prevalence, mortality, and incidence of MS in Caucasian South Africans10. The study found that between 1945 and 1954, there were 0.6 cases per 100 000 people and 9.1 cases per 100 000 people, with a higher proportion of females affected. Radhakrishnan and colleagues also conducted a multicenter, hospital-based study in Libya between 1982 and 1984, which found an incidence of 0.8 per 100 000 and a prevalence of 4 per 100 00011. In addition, Rosman and colleagues conducted a study in 1985 utilizing neurologists and evoked potential referrals to determine the incidence of MS in South Africa (in the cities of Pretoria and Wonderboom); the study reported an incidence of 1.6 per 100 000 from 1984 to 1985 but did not determine the prevalence12. The most recent studies on the incidence and prevalence of MS in Africa include a cross-sectional study by Bhigjee and colleagues in 2007 and a community-based survey by Tallawy and colleagues in 201313,14.
A study conducted in the KwaZulu-Natal region of South Africa aimed to determine the prevalence of MS across different ethnic groups and found rates of 25.6 per 100 000 in the Caucasian group, 7.6 per 100 000 in the Indian group, 1.9 per 100 000 in the mixed-ancestry group, and 0.2 per 100 000 in the Black group5. Another study, a community-based survey conducted by Tallawy et al.6, in 2013 in Al-Quseir, Egypt, reported a prevalence of 13.74 per 100 000 people in the region. The Global Burden of Disease Investigation collaborated to conduct an extensive study in 2019 to estimate the national and regional global burden of MS from 1990 to 20169. The study found a prevalence of 8331 in the South African region, 14 426 in the West African region, 12 793 in the East African region, 74 346 in the North African region, and 3239 in the Central African region. The country with the lowest prevalence in Africa was Sao Tome and Principe, at 29 566, and the highest was Egypt. When comparing the prevalence and incidence of MS in Africa to other regions, it is clear that the rates are generally lower15. However, it is important to note that these estimates may be underestimated due to a lack of access to diagnostic tools and trained healthcare professionals in many parts of Africa. In addition, the differences in the prevalence and incidence of MS across different ethnic groups in Africa may be due to genetic and environmental factors2. The potential impact of these differences on the diagnosis and management of MS in Africa is significant, as it highlights the need for increased access to diagnostic tools and trained healthcare professionals to diagnose and treat the disorder accurately (Tables 1 and 2).
Table 1.
Incidence and prevalence of multiple sclerosis per 100 000 populations in Africa
| References | Study design | Country | Study area | Years | Incidence | Prevalence |
|---|---|---|---|---|---|---|
| Dean2 | Retrospective cohort study | South Africa | – | 1945–1954 | 0.6 | 9.1 |
| Radhakrishnan et al.3 | Multicentered Hospital-based study | Libya | – | 1982–1984 | 0.8 | 4 |
| Rosman et al.4 | Prospective Cohort Study | South Africa | Pretoria and Wonderboom | 1984–1985 | 1.6 | – |
| Bhigjee et al.5 | Cross-sectional study | South Africa | KwaZulu-Natal | 2007 | – | 25.6 in the Caucasian group, 7.6 in the Indian group, 1.9 in mixed ancestry and 0.2 in Blacks |
| Tallawy et al.6 | Community-based survey | Egypt | Al-Quseir | 2013 | – | 13.74 |
Table 2.
Available treatment options for multiple sclerosis in Africa and their estimated costs16
| Treatment option | Estimated cost (/month) |
|---|---|
| Interferon beta | $500–$1500 |
| Fingolimod | $2500–$3000 |
| Natalizumab | $5000–$6000 |
| Glatiramer acetate | $1000–$1500 |
| Mitoxantrone | $1000–$2000 |
Risk factors for multiple sclerosis in Africa
MS is a complex neurological disorder with genetic and environmental risk factors. Early research on MS found that certain racial groups had a high prevalence of the illness, suggesting that heredity plays a significant role in developing the condition8. Genome-wide association studies have identified multiple susceptibility genes, including specific alleles at the major histocompatibility complex that increase or decrease the risk of developing MS9. For example, the HLA-DRB1*1503 allele is common among populations of African ancestry while the HLADRB11501 and HLA-DRB10405 alleles are common among populations of European and non-European ancestry9.
Environmental risk factors have also been identified as playing a role in the development of MS16. These include the Epstein–Barr virus, migration, vitamin D deficiency, smoking, and obesity. In Africa, the Epstein–Barr virus and migration are the major environmental risk factors for MS. The Epstein–Barr virus is a herpes virus linked to the onset of MS in pediatric and adult populations12,13. Migration, as studied by Dean and Kurtzke15, in 1971, has also been found to impact the incidence of MS, with individuals who immigrate before the age of 15 having a lower risk. Several large-scale epidemiological studies have investigated the relationship between migration and MS risk14–16. For example, a study conducted in the USA found that African Americans who migrate from the southern to the northern regions of the country have a higher risk of developing MS than those who stay in the southern region15. Similarly, a study conducted in Norway found that immigrants to Norway from countries with a low incidence of MS had a lower risk of developing the disease than those who were born in Norway15. However, the role of other environmental factors such as vitamin D deficiency, smoking, and obesity in MS incidence in Africa has not been studied yet. Still, these factors could likely have an impact, given the prevalence of these conditions in Africa.
It is worth noting that the incidence of MS in Africa is generally lower than in other regions of the world, which may be due to a lack of genetic and environmental risk factors present in Africa. Nonetheless, this low incidence may be due to underreporting of African MS cases. In addition, lifestyle changes such as diet, physical activity, and smoking habits have not been extensively studied regarding MS incidence in Africa. Still, these factors likely play a role in the development of the disease17–25.
Challenges to the management of multiple sclerosis in Africa
Several factors, including lack of awareness, limited access to healthcare, financial constraints, diagnostic challenges, limited availability of treatments, sociocultural factors, lack of infrastructure, limited research, low awareness and understanding of MS among healthcare providers, cultural barriers, challenges in drug supply chains, limited resources for rehabilitation, and limited access to palliative care hinder the management of MS in Africa26.
Lack of awareness of the signs and symptoms of MS makes it difficult for patients to receive a proper diagnosis and appropriate treatment. In addition, limited access to specialized medical care and trained healthcare professionals in many areas, lack of basic infrastructure such as hospitals, clinics, and roads, and cultural barriers such as traditional beliefs and mistrust of modern medicine make it difficult for patients to access healthcare. Financial constraints, such as the cost of medications and other treatments, can also be a major hurdle for patients, particularly in developing countries. Diagnostic challenges, such as the similarity of MS symptoms to other conditions, can lead to delayed treatment. Limited availability of treatments for MS, and sociocultural factors like stigma and lack of education about the disease, can also contribute to delayed diagnosis, lack of healthcare access, and treatment adherence.
Accurate diagnosis of MS is critical for initiating appropriate treatment and improving patients’ quality of life. However, the availability of diagnostic tools for MS varies widely across Africa. The limited availability of diagnostic tools and high testing costs present significant challenges to accurately diagnosing MS in Africa. In some cases, patients travel long distances to access an MRI machine, which is both costly and time-consuming. In addition, the high cost of testing discourages patients from seeking a diagnosis or leads to delays in diagnosis, which significantly impacts their health outcomes. In addition to the availability of diagnostic tools, the number of healthcare professionals trained to diagnose and treat MS is also a critical factor in improving patient outcomes. In Africa, the availability of neurologists who specialize in treating MS varies widely by country and region. Figure 1 shows the distribution of neurologist in Africa, Algeria has the most number of neurologist, while Eritrea, South Sudan, Equitorial Guinea, and Sao Tome and Principe had no registered neurologists.
Figure 1.
Map showing the number of available neurologists in each African country24.
Access to affordable and accurate diagnosis and treatment of MS is a significant challenge in Africa25. Currently, the most widely used diagnostic tools for MS are expensive and are not widely available in all areas of Africa. To address this, there is a need for more low-cost diagnostic tools that can be used to diagnose MS accurately, such as clinical evaluation and other noninvasive techniques that do not require expensive equipment. In terms of treatment, disease-modifying therapies can be expensive and out of reach for many patients in Africa. However, some low-cost treatment options have shown promise in managing MS symptoms26. For example, high-dose vitamin D supplementation has been shown to improve outcomes in MS patients and is a low-cost option that could be more widely implemented in Africa26. In addition, physical therapy and rehabilitation programs can help MS patients manage symptoms and maintain functionality and may be more accessible and cost-effective than disease-modifying therapies. Further research is needed to fully understand the effectiveness of low-cost diagnostic and treatment options for MS in Africa, but the need for more accessible and affordable options is clear.
The management of MS in Africa is often hindered by sociocultural factors that affect patient outcomes. Stigma and discrimination toward patients with MS have a profound impact on their quality of life and mental health. In many African cultures, disability is viewed as a curse or punishment, which leads to social isolation and discrimination against patients with MS. This results in delays in seeking medical care and affects adherence to treatment regimens.
In developed countries, support groups have been established to provide patients with MS a platform to connect with others who share similar experiences, share information, and provide emotional and psychological support. However, in Africa, the number of support groups for patients with MS is limited. The lack of support groups in Africa can significantly hinder the management of MS in the continent. This is a significant challenge that needs to be addressed to improve the management of MS in Africa. Support groups can provide critical support to patients and their families, which could lead to improved patient outcomes, increased adherence to treatment regimens, and reduced social isolation.
The emergence of the COVID-19 pandemic in early 2020 has further exacerbated the challenges faced by MS patients in Africa, with significant disruptions in medical care and treatment, increased financial stress, worsening of symptoms, and a decrease in research and development activities for MS drugs27.
Recommendations and future research areas for multiple sclerosis management in Africa
Increasing awareness of MS in Africa is crucial in improving the management and care of patients with the condition. The lack of knowledge and understanding of the disease can lead to delays in diagnosis and treatment, which can have a significant impact on the quality of life of patients. One way to increase awareness is through public health campaigns. Developing and implementing public health campaigns that educate the general public about MS and its symptoms can help increase awareness and understanding of the disease. This can be done through various mediums such as television, radio, newspapers, and social media. These campaigns can help to break down the misconceptions and stigmas associated with MS and provide accurate information to the public. Another way to increase awareness is by providing training and education for healthcare professionals on MS. Providing training and education for healthcare professionals on the latest diagnostic tools, treatments, and management guidelines for MS can help improve the early diagnosis and treatment of patients. This can help healthcare professionals identify the symptoms better and provide appropriate care to patients with MS. Another key step is to improve access to diagnostic tools and treatments for MS. This can be done by providing affordable and accessible drugs and rehabilitation services, as well as by developing and implementing national MS management guidelines. This will ensure that patients receive consistent and high-quality care. To improve care coordination for patients with MS, it is important to foster multidisciplinary collaborations between neurologists, rehabilitation specialists, and other healthcare professionals. This will help ensure patients receive the best possible care and support. In addition, it is essential to collaborate with regional and international organizations to share knowledge and resources to improve the management of MS in Africa. This will help ensure patients receive the best possible care and support.
Despite the significant impact of MS on patients in Africa, several research gaps need to be addressed to improve the management of the disease. One of the main research gaps is the limited data on the epidemiology of MS in Africa. There is a lack of information on the prevalence, incidence, and demographic characteristics of MS in Africa, making it difficult to understand the specific challenges faced by patients and healthcare providers in the region.
Another gap is the limited research on the cultural and socioeconomic factors that impact African MS management. More research is needed to understand the cultural and socioeconomic factors that contribute to the management of MS in Africa, including the impact of traditional beliefs and mistrust of modern medicine. In addition, limited research on the availability and accessibility of MS treatments in Africa is a gap that needs to be addressed. There is a lack of information on the cost and availability of medications, rehabilitation services, and palliative care.
The impact of the COVID-19 pandemic on MS patients in Africa is another research gap that needs to be addressed, as it is still unclear how the pandemic has affected access to care and treatment for MS patients in Africa. Furthermore, limited research on the impact of the social determinants of health on MS management in Africa is a gap that needs to be filled. Social determinants of health, such as poverty, education, and access to healthcare, can significantly impact MS management in Africa. Still, more research is needed to understand how these factors affect the diagnosis, treatment, and outcomes of African MS patients.
Limitations of study
This review has few limitations that should be taken into consideration when interpreting the findings. First, there is limited data available on the management of MS in Africa, which restricted the scope and depth of the review. Moreover, MS management varies across countries and regions in Africa due to differences in healthcare infrastructure, resources, and cultural beliefs. Therefore, it was not feasible to capture all the nuances of MS management in this review. Finally, there is a limitation of language. Most of the literature on MS in Africa is published in the English language. Consequently, this review is restricted to English language sources only.
Conclusions
The incidence and prevalence of MS in Africa is yet to be determined due to scarcity of epidemiological data affected by underreporting and underdiagnosis. What is evident, however, is its significant burden in the African population. Furthermore, there are also considerable challenges in healthcare delivery such as lack of awareness, sociocultural beliefs, limited access to diagnostics tools and treatments, inadequate coordination, and lack of support group. However, by increasing awareness and education about MS, improving access to diagnostic tools and treatments, fostering multidisciplinary collaborations, and encouraging and supporting research on MS in Africa, it is possible to improve the management of the disease and improve the lives of those affected by MS in Africa. It is important to note that improving the management of MS in Africa requires a concerted effort from all stakeholders, including healthcare professionals, policymakers, and international organizations. Collaboration and sharing of knowledge and resources are crucial to ensure that patients receive the best possible care and support.
Ethical approval
NA.
Consent
NA.
Sources of funding
No external funding was received for this study.
Author contribution
Conceptualization: NA & AOM, Writing First Draft: NA, AOM & JO, Writing Final Draft: NA, AOM & JO.
Conflicts of interest disclosure
The authors declare that they have no financial conflict of interest with regard to the content of this report.
Research registration unique identifying number (UIN)
NA.
Guarantor
Nicholas Aderinto.
Provenance and peer review
Not commissioned, externally peer-reviewed.
Acknowledgements
None.
Footnotes
Sponsorships or competing interests that may be relevant to content are disclosed at the end of this article.
Published online 6 April 2023
Contributor Information
Nicholas Aderinto, Email: nicholasoluwaseyi6@gmail.com.
AbdulBasit O. Muili, Email: muiliabdulbasit@gmail.com.
Joshua Opanike, Email: Olajoshua1@gmail.com.
References
- 1. Heine M, Maartens D, Hanekom S, et al. Multiple sclerosis in sub-Saharan Africa – a scoping review. Mult Scler Relat Disord 2020;42:102133. [DOI] [PubMed] [Google Scholar]
- 2. Dean G. Annual incidence, prevalence, and mortality of multiple sclerosis in white South-African-born and in white immigrants to South Africa. Br Med J 1967;2:724–30. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 3. Radhakrishnan K, Ashok PP, Sridharan R, et al. Prevalence and pattern of multiple sclerosis in Benghazi, North-Eastern Libya. J Neurol Sci 1985;70:39–46. [DOI] [PubMed] [Google Scholar]
- 4. Rosman KD, Jacobs HA, van der Merwe CA. A new multiple sclerosis epidemic? A pilot survey. S Afr Med J 1985;68:162–163. [PubMed] [Google Scholar]
- 5. Bhigjee AI, Moodley K, Ramkissoon K. Multiple sclerosis in KwaZulu Natal, South Africa: an epidemiological and clinical study. Mult Scler 2007;13:1095–1099. [DOI] [PubMed] [Google Scholar]
- 6. Tallawy HN, Farghaly WM, Rageh TA, et al. Door-to-door survey of major neurological disorders (project) in Al Quseir City, Red Sea Governorate, Egypt. Neuropsychiatr Dis Treat 2013;9:767–771. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 7. GBD 2016 Neurology Collaborators. Global, regional, and national burden of neurological disorders, 1990-2016: a systematic analysis for the Global Burden of Disease Study 2016. Lancet Neurol 2019;18:459–480. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 8. Ebers GC, Sadovnick AD, Risch NJ. A genetic basis for familial aggregation in multiple sclerosis. Canadian Collaborative Study Group. Nature 1995;377:150–151. [DOI] [PubMed] [Google Scholar]
- 9. Jacobs BM, Peter M, Giovannoni G, et al. Towards a global view of multiple sclerosis genetics. Nat Rev Neurol 2022;18:613–623. [DOI] [PubMed] [Google Scholar]
- 10. International Multiple Sclerosis Genetics Consortium. Multiple sclerosis genomic map implicates peripheral immune cells and microglia in susceptibility. Science 2019;365:eaav7188. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 11. Moutsianas L, Jostins L, Beecham AH, et al. Class II HLA interactions modulate genetic risk for multiple sclerosis. Nat Genet 2015;47:1107–1113. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 12. Sundqvist E, Sundström P, Lindén M, et al. Epstein-Barr virus and multiple sclerosis: interaction with HLA. Genes Immun 2012;13:14–20. [DOI] [PubMed] [Google Scholar]
- 13. Alotaibi S, Kennedy J, Tellier R, et al. Epstein-Barr virus in pediatric multiple sclerosis. JAMA 2004;291:1875–1879. [DOI] [PubMed] [Google Scholar]
- 14. Milo R, Kahana E. Multiple sclerosis: geoepidemiology, genetics and the environment. Autoimmun Rev 2010;9:A387–A394. [DOI] [PubMed] [Google Scholar]
- 15. Dean G, Kurtzke JF. On the risk of multiple sclerosis according to age at immigration to South Africa. Br Med J 1971;3:725–729. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 16. Dean G, Bhigjee AIG, Bill PLA, et al. Multiple sclerosis in Black South Africans and Zimbabweans. J Neurol Neurosurg Psychiatry 1994;57:1064. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 17. Makhani N, Morrow SA, Fisk J, et al. MS incidence and prevalence in Africa, Asia, Australia and New Zealand: a systematic review. Mult Scler Relat Disord 2014;3:48–60. [DOI] [PubMed] [Google Scholar]
- 18. Walton C, King R, Rechtman L, et al. Rising prevalence of multiple sclerosis worldwide: insights from the Atlas of MS, third edition. Mult Scler 2020;26:1816–1821. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 19. Pierrot Deseilligny C, Souberbielle JC. Contribution of vitamin D insufficiency to the pathogenesis of multiple sclerosis. Ther Adv Neurol Disord 2013;6:81. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 20. Oksenberg JR, Baranzini SE, Sawcer S, et al. The genetics of multiple sclerosis: SNPs to pathways to pathogenesis. Nat Rev Genet 2008;9:516–526. [DOI] [PubMed] [Google Scholar]
- 21. Tarlinton RE, Khaibullin T, Granatov E, et al. The interaction between viral and environmental risk factors in the pathogenesis of multiple sclerosis. Int J Mol Sci 2019;20:303. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 22. O’Gorman C, Lucas R, Taylor B. Environmental risk factors for multiple sclerosis: a review with a focus on molecular mechanisms. Int J Mol Sci 2012;13:11718–11752. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 23. Jamal I, Shah J, Mativo P, et al. Multiple sclerosis in Kenya: demographic and clinical characteristics of a registry cohort. Mult Scler J Exp Transl Clin 2021;7:20552173211022782. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 24. Okubadejo N, Ojo O, Lawal T, et al. Unveiling multiple sclerosis in nigeria: the conundrum of diagnosis and access to disease modifying therapies (P5.152). Neurology 2014;82(suppl):10. [Google Scholar]
- 25. Yamout BI, Assaad W, Tamim H, et al. Epidemiology and phenotypes of multiple sclerosis in the Middle East North Africa (MENA) region. Mult Scler J Exp Transl Clin 2020;6:2055217319841881. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 26. Multiple Sclerosis International Federation. MS in Africa. 2017. Accessed: February 10, 2023. https://www.msif.org/about-ms/ms-in-africa/ [DOI] [PMC free article] [PubMed]
- 27. World Health Organization. Multiple sclerosis. 2017. Accessed: February 10, 2023. https://www.who.int/news-room/fact-sheets/detail/multiple-sclerosis