A visit to MS organisations in Namibia and South Africa

A recent MSIF visit to MS South Africa and MS Namibia offered powerful insights into the lived experiences of people with MS in the region. MSIF’s Organisational Development and Movement Building team (ODMB) visited to better understand the MS landscape in Southern Africa.

From TV interviews, to focus groups and hospital visits – the trip highlighted the need for better MS awareness, access and equity in MS care. The findings will be used to inform MSIF’s work to better support MS organisations in Africa. Learn more about the visit from Senior ODMB Manager’s Annthadine O-Oyefeso and Paulina Arce Casillas.    

South Africa 

The first stop on the journey was MS South Africa (MSSA), MSIF’s newest member. MSSA provides emotional support and accurate information to people affected by MS. Through advocacy, education, and collaboration it works to improve diagnosis, treatment access and equal care for over 5000 people with MS.  

We met with MSSA’s leadership team including its Director & Chairperson, Non Smit. Together we ran a focus group with people living with MS, interviewed local healthcare professionals and met with NGO partners. 

Through the focus group we learnt about the impact of MS on daily life in South Africa, including barriers to diagnosis and treatment. Participants shared stories of resilience against a backdrop of challenges including healthcare disparities. 

MS is considered a rare disease in South Africa, and whilst there are a range of disease modifying therapies (DMT’s) available, access to medication and treatment depends on ta person’s health coverage, with private or public health recipients receiving very different care.  

In addition, there is a misconception that MS is primarily a ‘white person’s disease’ when it affects individuals from all races, ethnicities and genders. This can result in misdiagnosis and delayed diagnosis amongst different population groups. Addressing these misconceptions amongst the healthcare professionals communities and the wider public is essential in improving equitable and timely access to diagnosis and treatment. 

The focus groups also highlighted the crucial role that MSSA plays within the local MS community – offering information, emotional support, and a sense of belonging for people with MS, their families and caregivers.  

It was fantastic to see the MSSA leadership team in action and to learn more about their work from their Board of Trustees. MSSA has increased its national and global efforts to support people with MS and to contribute to the wider MSIF movement, and we shared ideas for the future.

This year MSIF worked with the MSSA team to pilot The May 50K in South Africa – an MSIF-led fundraising challenge to walk, roll, or run 50km in May. During the trip we delivered participant t-shirts and medals for MSSA to share with local participants. The Board were enthusiastic to be part of this global initiative, for which MSSA raised £20,000. The money will support MSSA’s national initiatives as well as global efforts to accelerate MS research and improve access to life-changing treatments. Looking ahead, the opportunity remains to expand the organisation’s reach, as many people with MS in South Africa still do not receive the support they need. 

Namibia 

The next destination was Namibia, with another busy itinerary meeting MS Namibia’s (MSN) leadership team, interviewing local healthcare professionals and running focus groups with people affected by MS. With the help of MSN founder, Bianca Ozcan, we connected with key stakeholders to gain a better insight into life with MS in Namibia. 

Around 60 people are recorded to be living with MS in Namibia from a population of almost 3 million. However, there are many barriers to diagnosis, including limited access to diagnostic tools for MS and high medical costs. As a result, MSN estimates that the true number of people living with MS is significantly higher. In response, MSN is working to improve MS data collection, raising MS awareness and providing diagnosis training for healthcare professionals. 

We met with local neurologists to discuss the road to diagnosis and treatment for people with MS in Namibia. The conversation offered valuable insights into the country’s healthcare system and the availability of DMTs. Namibia’s public health system does provide access to two types of DMT, but both require prescriptions that can be difficult to obtain. There is no centralised medical database in Namibia with patient records still being paper based, meaning data inaccuracies are common. This makes the process of getting diagnosed or renewing a prescription time-consuming, expensive, and difficult for those who live far from the Capital.

In Swakopmund, a coastal town 300 kilometres west of the capital city of Windhoek, we met a group of women with MS who shared their personal journeys with us. Their stories highlighted the challenges of living far from the capital, where access to specialised medical care is extremely limited. MSN makes a huge difference to the quality of life of people with MS in Swakopmund– providing a community hub to socialise and access information and support – such as mobility aids where necessary.  

The level of pastoral care provided by MSN was truly remarkable. Even with limited resources and the vast distances between those affected, the organisation continues to strive for excellence in supporting its members and their caregivers. MSN’s grassroots efforts are transforming lives. 

One of the visit highlights was being interviewed on television for ‘Good Morning Namibia’. Annthadine and Bianca were interviewed on this popular live morning TV show to raise awareness about MS, MSN and the global MS movement. You can watch the full interview here.    

Reflections  

The trip highlighted the extraordinary impact that MS Namibia and MS South Africa are making despite limited resources and small teams of volunteers. Their dedication improves the quality of life for the people with MS they support and demonstrates the power of local leadership and community-driven action. At the same time, the visit revealed clear opportunities for further growth and collaboration with the global MSIF movement. It offered valuable insights into growing our work with MS organisations in Africa and building on MSIF’s ongoing engagement with North Africa in line with our Aim to support a Stronger, broader, global MS movement.   

A heartfelt thank you to Non and Bianca, for warmly hosting us. Your hospitality and collaboration were truly appreciated. 

Authored by Annthadine O-Oyefeso, Senior Organisational Development and Movement Building Manager and Paulina Arce Casillas, Senior Organisational Development and Movement Building Manager at MSIF.