A visit to MS organisations in Central America

MSIF visited MS organisations in Central America to connect with local leaders. The visit gave an insight into MS care within Honduras and Guatemala, including complex health systems, barriers to treatment, and the importance of greater MS awareness. It also highlighted the strength of local MS communities in action, as national MS organisations continue to provide vital support and solidarity to people with MS. 

The trip formed part of MSIF’s ongoing work to strengthen and support MS organisations globally. Learn more about the visit from Paulina Arce Casillas, Senior Organisational Development and Movement Building Manager, and Sarah Dobson, Senior Communications and Campaigns Manager at MSIF. 

Honduras 

MSIF started the trip in Honduras with a visit to the Fundación Esclerosis Múltiple Amor (FEMA), an MS organisation located in San Pedro Sula. As FEMA was applying to become an Associate member with MSIF it was a great opportunity to see the organisation in action.  

FEMA began in the corridors of a local hospital where people with MS would meet regularly whilst waiting to attend appointments. A community was built with the founders inviting patients from other hospitals to join. Formally registered in 2019, FEMA now supports people with and affected both in San Pedro Sula and Tegucigalpa – the two main cities providing MS care. The organisation exists to support and advocate for people with MS across the country, around 346 people with MS in total.     

Meeting the team at FEMA

The visit to Honduras was packed with activity, including workshops with FEMA’s Board, focus groups with people with MS, hospital tours and interviews with health care professionals. 

The first day, MSIF ran a workshop with FEMA’s Board. Trustees joined online from Tegucigalpa and inperson in San Pedro Sula. Together participants developed a policy consolidating good organisational practises for FEMA to take forward when working with the healthcare stakeholders.  

Hospital Visits

Paulina was the invited to observe the first administration of ocrelizumab to MS patients in the country at the Mario Caterino Rivas Hospital. This was a significant moment in the country’s MS treatment landscape as ocrelizumab is considered a high efficacy treatment for MS. It was clear that FEMA has built a strong working relationship with healthcare professionals at the hospital, all parties working together to provide diagnosis and treatment services to people with MS. Similarly, the nursing team at the Honduran Social Security Institute Hospital highlighted the key role that FEMA has played in improving MS care. FEMA helped to furnish the infusion clinic with comfortable reclining chairs, blankets and fans to make the experience as comfortable as possible for people with MS. 

Focus Groups

On the final day, a focus group was held with 6 people with MS who shared their diagnosis stories, experiences accessing MS medicines, and reflections about daily life with MS in Honduras. There was also an interview with Karlibeth Ortega, a young person with MS. Karlibeth shared her hopes for the future with MS, responding   

“I think to find a cure….. that’s the main goal for all of us, to find a cure. And if not the cure, at least treatments that are less painful, and are more manageable for us to deal with daily… [and] for people to know more about MS around the world, and especially in our countries that need a lot of information, so that people can be more have more empathy for us and have more understanding”  

Overall, the visit to Honduras provided a valuable opportunity to gain a deeper understanding of FEMA’s structure and services, as well as meaningful insight into the realities of living with MS in the country. 

Guatemala 

In Guatemala, MSIF visited the Asociación Guatemalteca de Esclerosis Múltiple (ASOGEM) an organisation dedicated to improving the quality of life for people with MS by working closely with patients, families, and healthcare professionals. 

Over the years ASOGEM has evolved from a small grassroots initiative, founded a handful of people affected by MS. 25 years on today, it provides information, psychological support, rehabilitation services, and resources for people affected by MS. ASOGEM has been a member of MSIF since 2015, contributing to various working groups including the International Working Group on Access. It advocates for the right of people with MS in Guatemala and is a respected voice for MS in the country.  

During the visit, ASOGEM President Mario Antonio Cuevas proudly gave a tour of their new headquarters, an expanded space equipped with multiple rooms for therapies and rehabilitation, community gatherings and resources for patients and caregivers. 

Life with MS in Guatemala

The first objective of the trip was to speak directly with people living with MS to gain a deeper understanding of their daily realities. Sarah interviewed four individuals who shared their powerful personal stories about MS diagnosis, navigating the healthcare systems and ASOGEM’s support.  

MS awareness is still relatively low in Guatemala, with access to diagnostic tests being largely limited to the capital Guatemala City.  

Berta Leticia’s path to diagnosis in 2010 was long and confusing ‘I went from neurologist to neurologist until I got to where I needed to go. MS is not a very common disease in Guatemala, and I felt treated like a guinea pig. They told me I had a virus, then a parasite – finally, that I had multiple sclerosis…Here, tests are very expensive, medicine is very expensive, and neurologists charge a lot.

Luz María injects interferon beta-1 three times a week but often faces shortages. ‘Sometimes I’m told there isn’t any supply available in the city. Most people diagnosed with MS don’t receive full support from the Institute of Social Security (IGSS), so many go without medication.’

Every participant described how ASOGEM provided essential support in these moments of trial and was a source of continued solidarity. Berta Leticia shared that ‘ASOGEM is my second home and my second family. They always call me when there are meetings or activities. They help me get medicine or discounts for MRIs, making them more affordable. ASOGEM injects life back into you when you think you have none left.’ 

Berta Leticia shares her story

Luz María shares her story

Workshops 

Later, Paulina and Sarah facilitated workshops with the ASOGEM Board to boost digital skills and share MSIF’s work. A session on ‘Adapting to the Digital World’ explored how ASOGEM can strengthen its digital presence and reach more people affected by MS, while maintaining online security and safeguarding data. 

Paulina and Sarah also presented updates on MSIF’s wider work, including progress on the Atlas of MS and the Essential Medicines List initiative, which aims to improve access to MS treatments globally. 

The visit concluded with a focus group of ASOGEM members who shared their perspectives on daily life with MS in Guatemala. Discussions highlighted ongoing challenges around stigma and low public awareness, but also underscoring the resilience of the MS community and a culture of mutual support 

Reflections 

The visit to Central America revealed the challenges and the strengths of MS communities in the region. People with MS continue to face systemic barriers – complex healthcare systems, limited access to medication, and inconsistent treatment supplies. Yet the resilience, empathy, and determination shown by grassroots organisations like ASOGEM and FEMA are truly inspiring. 

Their work demonstrates the transformative power of community-led support and the importance of collaboration between local and global partners. These insights will inform MSIF’s ongoing efforts to strengthen MS organisations in Latin America to provide the care that people with MS need.  

A huge thank you to FEMA and ASOGEM for your warm welcome, and Suyapa Lupi and Mario for your wonderful hospitality. A special thanks to every person with MS who shared their stories so powerfully in interviews and focus groups. 

Reflections 

The visit to Central America revealed the challenges and the strengths of MS communities in the region. People with MS continue to face systemic barriers – complex healthcare systems, limited access to medication, and inconsistent treatment supplies. Yet the resilience, empathy, and determination shown by grassroots organisations like ASOGEM and FEMA are truly inspiring. 

Their work demonstrates the transformative power of community-led support and the importance of collaboration between local and global partners. These insights will inform MSIF’s ongoing efforts to strengthen MS organisations in Latin America to provide the care that people with MS need.  

A huge thank you to FEMA and ASOGEM for your warm welcome, and Suyapa Lupi and Mario for your wonderful hospitality. A special thanks to every person with MS who shared their stories so powerfully in interviews and focus groups.