In 2019, we convened a meeting of experts from around the world to establish key priorities in access to MS treatment and healthcare

The barriers to accessing healthcare are many and complex. They vary from country to country, but also between demographics within countries. This is why MSIF’s international working group on access comes together to find ways of improving access to MS treatments and care around the world.

In July, the working group met to talk about key issues on global access to MS healthcare, with representation from all world regions. We also had a virtual online group of people affected by MS from Indonesia, Latvia, Morocco, Sri Lanka, the United States, Uruguay and Zambia. The meeting was an important step in advancing the global MS access agenda.

Topics discussed at the meeting included:

  • The development of pragmatic diagnostic and treatment guidelines for MS in low-resource settings
  • Training and models of healthcare provision for MS healthcare professionals in low-resource settings
  • The availability and affordability of safe and effective MS treatments

Global guidelines as part of the solution

One of the key discussion points was the importance of having globally relevant differential diagnosis and flexible treatment guidelines that take into account different levels of resource. To diagnose MS quickly and accurately, it is important to rule out other diseases that may have similar symptoms.

Treatment guidelines can be used to promote consistency of care, inform decision-making, and discourage the use of ineffective interventions. Global guidelines could provide local groups with leverage for better access to treatment.

The group recognised that guidelines alone are not enough. Effective implementation relies on the availability of healthcare professionals who know and understand MS. Implementation also requires the appropriate infrastructure to perform certain diagnostics or supporting tests.

To overcome these challenges, guidelines should also be flexible to the availability of infrastructure and diagnostics in different settings, and suitable training for healthcare professionals in low resource settings must be available.

Training and models of healthcare provision

During the meeting, experts and neurologists presented on different training and healthcare models around the world. Participants were struck by the diversity of options but acknowledged the importance of co-ordination between countries and organisations to help identify global gaps and streamline efforts.

More online and digital resources could also be used to support healthcare training. International and regional clinical peer-support could help build expertise in low resource settings.

Access to safe and effective MS treatments

Participants agreed that the availability and affordability of safe and effective MS treatments was an immediate concern. The Northern Morocco Association of Multiple Sclerosis (NORD MASEP) kicked-off the access discussion with a presentation describing the state of access to treatment in Morocco. They also discussed their joint campaign for better access to treatments in Morocco, with the Moroccan Association for People Affected by MS (AMMASEP) and the HANA Multiple Sclerosis Patients Association (HANASEP). Most people with MS who the MS organisations work with cannot access or afford their MS treatment. This problem is not unique to Morocco, but can be seen across the world.

When approved MS treatments are not available or affordable, off-label MS treatments can sometimes be used. The group agreed that off-label treatments is an area of opportunity and challenge. Off-label Disease Modifying Therapies (DMTs) can provide treatment options for people with MS who otherwise might not get treatment. However, more clarity around the appropriate use of off-label DMTs is necessary.

MSIF’s application to the WHO Essential Medicines List was also discussed. The group considered how to address the comments put forward by the WHO Expert Committee and how and when it may be appropriate to submit a revised application.

The delegates of the meeting were enthusiastic about the focus and determination to start tackling this difficult topic. Tim Coetzee, Chief Advocacy, Services, and Research Officer at the National MS Society in the USA said ‘We face many challenges but we are optimistic that we can have global impact.’

Efforts to overcome the key barriers to widening access to treatment continue.

You can read the full meeting report here.