AFLAR
Rheumatology: a New Dawn in Africa, but what about Advocacy?
Being members of the EULAR IPARE Working Group, Franklin Hiagbe, Maranda van Dam and Dieter Wiek (pictured) attended the African League of Associations for Rheumatology (AFLAR) Congress in conjunction with the Cameroon College of Rheumatology from 10 – 12 April 2025 in Yaoundé, Cameroon.
EULAR IPARE was founded in 2022 and aims to connect and collaborate with patient organisations outside of Europe.
Rheumatologic Care in Africa
In Africa there is a massive lack of rheumatologists. According to a study done by the ACR in 2015, the ideal ratio would be 2:100 000.
Africa currently has 150 rheumatologists serving a population of 1.25 billion. The majority of rheumatologists (85) are in South Africa (60 million population) with the remaining 65 serving 1,240 billion people. There is no record of rheumatologists in 17 countries.
Africa is contaminated with infectious diseases like HIV and hepatitis and regular breakouts of cholera, malaria and measles. Resources and medical care are funneled to take care of these patients, and RMD resources are severely watered down. Medications are often shared or halved by patients themselves to assist other patients when supplies run low.
In contrast to earlier reports, rheumatological conditions are now not considered to be rare in Africa and several presentations reflected this, but we have to be aware of phenotypes that are unique to Africans. An increase in demand is caused by migration.
The role of the traditional healer plays a massive role in the delay to diagnosis of a lot of patients, as this would be the first port of call for most. There is a famous saying in Cameroon “one finger cannot hold a piece of meat”. In other words, at least two fingers are required to eat a piece, even with a fork. It is normal for many African patients to seek health care from both traditional and western medicine. It is also believed in the family unit if someone is ill. This could be an evil spirit and not a chronic disease, and the understanding of chronic diseases is minimal.
Our key takeaways from the AFLAR Conference:
- The prevalence of musculoskeletal disorders in the developing world is similar to the developed world, but the burden is higher due to delayed diagnosis. poverty, manual labour, sociocultural ingrained fear of these diseases, limited access to treatment and care.
- Access to services is limited because of lack of clinical services, there is rarely the opportunity for rehabilitation and reconstructive surgery.
- Due to exorbitant costs treatment with biologics is not possible, DMARDs used well are regarded as just effective.
- No guidelines are available for treating and monitoring patients with co-infections like HIV, TB, Hepatitis.
- Heterogeneity exists from country to country in Africa, but also within countries.
- Collaborative research projects, clinical studies, epidemiological studies and registries can generate evidence to guide clinical practice and policy making.
- A roadmap must be created to increase the number of rheumatologists and enable more equitable access to healthcare across Africa.
- The value of support groups for disease management has long been acknowledged, but most countries lack this pillar of healthcare.
Patient support groups
Several presentations underlined the importance and relevance of patient support groups. According to a presentation by Dr Dfiza Dey from Ghana there exist 16 patient support groups in 11 African countries.
A survey from Ghana, where 122 physicians with an average of 7 years of practice participated, showed that the majority acknowledged the positive impact of patient support groups and expressed their willingness to recommend support groups, but time constraints and inadequate support systems were regarded as barriers. The major concern, however, was the fear that patient support groups provide misinformation and encourage unconventional, traditional, not evidence-based therapies.
With our attendance and our two presentations we intended to create awareness in how far patient support groups can contribute to better healthcare and how you can implement patient support groups in practice. We emphasized the need that clinicians, healthcare professionals and patient representatives collaborate, altogether guide the work and thus add credibility to their work and outcome.
Both presentations were well received. Hearing from a patient group was indeed a foreign occurrence for most of the rheumatologists in the room. We spent a long time arguing and convincing them of the importance. Some attendees expressed their interest in supporting the initiation of patient support groups.
The importance of patient support is lost in most parts of Africa. Education, especially concentrating on sub-Saharan Africa, needs to be the focus over the next 5 years. It is important to emphasize the role a patient support network can have on already overburdened specialists and healthcare.
As a new dawn breaks in Africa for rheumatological diseases, a massive need for patient advocacy and support groups will grow exponentially. The lower income countries rely heavily on western countries for support and education, which makes this hopeless situation seem less so.
There is no doubt that the growing number of RMD patients across Africa will create a massive burden on patient care and support systems. The role of patient support groups is a crucial and beneficial element of any health system. The needs of an RMD patient are often much more than a clinical appointment. In the foreseeable future Africa will face the challenge of offering patient support to already impoverished countries.
As one of our colleagues said during the conference: ”If you do not think that you will make a difference, no matter how small you are, you have clearly not been in a room with a mosquito”.
Based on our experiences we would like to offer our help in initiating patient support groups and support them on their way.
Thanks to EULAR and the AFLAR organisers for enabling this great AFLAR experience.
References:
African Journal of Rheumatology Volume 11, January 2023m ISSN 2307-2482
Profile of Spondyloarthropathy patients in Kano, Northwestern Nigeria
Ibrahim DA, Na’Isa MBK, Hamidu A
Spondyloarthritis and autoimmune diseases: preliminary study of 23 Senegal Cases
Charifah S, Niasse M, Gueye YA, Diallo S
Call for Action: development of patient registries in Africa
Genga EK
The current outlook of rheumatological care in Africa: Current State, challenges and recommendation. Annals Med Surg 2022;82 https://doi.org/10.1016/j.amsu.2022.104689
Traditional healers to improve access to quality health care in Africa
Yao Boum, Sylvie Kwedi-Nola, Jessica E Haverer, Rise R G Leke
For more information contact:
Dieter Wiek, EULAR, IPARE – dieter_wiek@web.de or birte.gluesing@eular.org
Maranda van Dam, Axial Spondyloarthritis Association South Africa – chairman@axspasa.org.za
Franklin Hiagbe, The Rheumatology Initiative Ghana – franklin.hiagbe@gmail.com
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