The barriers to accessing MS healthcare are wide-ranging and complex. They vary from country to country, but also between different groups within countries. Some challenges can be addressed locally, but in an interconnected world it is vital we also look to global, sustainable solutions.
Our work globally
A diagnosis of MS is essential for getting treatment, but the Atlas of MS reports that 83% of countries worldwide have barriers that prevent early diagnosis of MS. Along with early diagnosis, access to treatment can make a significant difference to the quality of life of people living with MS. Very effective treatments, or disease modifying therapies (DMTs) exist to manage MS, minimising relapses and reducing future disability.
As of 2023, there are 20 different disease modifying therapies approved by the European Medicines Agency (EMA) and/or the Food and Drug Administration (FDA) for treating MS. Yet access to DMTs is not universal – data from the Atlas of MS shows that people with MS in 70% of countries face barriers in accessing DMTs.
To tackle these challenges, we have set out a framework for the actions that are needed so that people with MS can benefit from swift diagnosis and the right treatment at the right time. This work is driven and shaped by MSIF’s International Working Group on Access, made up of MS experts from over 15 countries across all world regions.
More recently, we have set out priorities for MS healthcare in our response to the WHO’s intersectoral global action plan for epilepsy and other neurological disorders (IGAP).
Joanna Laurson-Doube, MSIF’s International Consultant for Access to Healthcare, writes about the issues of equitable access to treatment for people living with MS, and in the video below, gives an overview of MSIF’s global work to improve access to treatment.
Essential medicines for MS
It is important for people living with MS to have a range of DMTs available to manage the disease course and allow people to consider the benefits and risks of different approaches.
The World Health Organization (WHO)’s Essential Medicines List (EML) has a key role in improving access to medicines globally, yet very few medicines for neurological conditions are included in this list. On July 26 2023, the WHO added three DMTs for MS onto the EML for the first time. The EML guides decision-makers on which disease modifying therapies should be available as a minimum in all health systems.
Off-label treatments for MS
In the Atlas of MS, 87% of countries reported using at least one off-label DMT. Off-label DMTs are often more readily available and affordable in health systems. The evidence-base for off-label treatments is different from treatments which have regulatory approval, but off-label treatments may be the only available and affordable option in low-resource settings.
The question of whether to use off-label treatments is a real issue that clinicians and people with MS face, and we want to support people to understand the benefits and risks, so they can make the best decisions to manage their disease.
Our work regionally and nationally
While international long-term change is essential, real change often happens at a national level. MSIF is working together with national MS organisations to energise local action in order to address challenges around access to MS healthcare.
MENA region access to treatment charter
In 2023, MS organisations across the Middle East and North Africa (MENA) region joined forces to advance their efforts in improving access to MS treatments in the region. With support from MSIF, they created the MENA regional access to treatment charter (English, Arabic) , using the collective voice of the region to call on decision-makers to integrate the right to safe and effective treatment for people with MS into national strategies, policies, and practices.
The charter is an important advocacy tool that MS organisations can use to cater to the range of realities and needs within the region. It has the potential to be used to advocate for policy change regionally, nationally and locally.
The Charter is endorsed by MENACTRIMS and 25 MS organisations in the region, and was launched in December 2023 at the Eighth MENACTRIMS Congress in Abu Dhabi, UAE.