Access to MS treatments

The development of a global plan to address the challenges of epilepsy and other neurological disorders was proposed in November 2020. As part of the process led by the World Health Organization (WHO), MSIF consulted widely with our MS community to review and provide feedback on this global plan. The plan was approved at the 75th World Health Assembly that took place at the WHO in May 2022.

MSIF welcomes the adoption of this global plan, which has set ambitious targets for countries to improve their provision of neurological care. The vision of the global plan sets out a world in which:

  • brain health is valued, promoted and protected across the life course;
  • neurological disorders are prevented, diagnosed and treated, and premature mortality and morbidity are avoided; and
  • people affected by neurological disorders and their carers fulfil their potential with equal rights, opportunities, respect and autonomy.

Peer Baneke, CEO of MSIF says:

This significant action plan from the WHO – which puts people living with neurological conditions at its centre – will help emphasise that these conditions are the leading cause of disability and the second leading cause of death globally. MSIF knows that many of the 2.8 million people living with MS around the world struggle to have all their needs met. We will be working with our members and global partners to support the implementation of the actions within this plan, especially where they align with MSIF’s critical work around access to MS healthcare.”

You can read more about the background to this plan and MSIF’s previous involvement here, including how we influenced the content of the plan.

MSIF will use the actions and targets within this plan to add emphasis and leverage to our current work at the global, regional and national levels, particularly in terms of advocacy.

What is in the global action plan?

Some of the targets and actions within the plan that are particularly relevant for MS and align with the work of the MSIF movement include:

  • 100% of countries to have at least one functioning awareness campaign or advocacy programme for neurological disorders, which we contribute to through World MS Day.
  • 80% of countries to provide the essential medicines and basic technologies required to manage neurological disorders in primary care. This links to MSIF’s work on essential medicines for MS.
  • Encouraging all relevant stakeholders to engage in activities to promote efforts for improving access to affordable, safe, effective and quality medicines, which aligns with our work on access to healthcare.
  • Supporting the implementation of capacity-building programmes, including training and education, for general and specialised health care workers to identify neurological disorders and provide evidence-based interventions to promote diagnosis, treatment and care for neurological disorders. MSIF is producing global guidelines on off-label use of certain DMTs in low resource settings, as well as recommendations for essential medicines for MS which will contribute to this action.
  • Mobilising financial support and strengthening capacity for research, innovation and knowledge exchange in neurological disorders, participating in priority-setting exercises and contributing to the dissemination of research findings. Together with our membership we have a track record in mobilising funds and coordinating research projects across the MS movement – another example of how MSIF’s work feeds into the global action plan.
  • Engaging the research community, health professionals, policymakers and the private sector in promoting the innovation and development of new tools and treatments for neurological disorders, while ensuring equitable and affordable access of these products in low- and middle-income countries. Examples of this is the work of the collaborative International Progressive MS Alliance and the global PROMS initiative.
  • 80% of countries to routinely collect and report on a core set of indicators for neurological disorders through their national health data and information systems at least every three years. Some of these core indicators will align with the data in the Atlas of MS. Through the Atlas, MSIF collates and provides comparisons of data that can be used for research and advocacy purposes.

What was not in the plan that will MSIF continue to emphasise?

There are some aspects that MSIF highlighted in our response to consultations on the global action plan that did not end up in the final text. We will continue to emphasise these aspects in our ongoing discussions with the WHO and other strategic partners:

  • The global action plan focuses on the essential medicines needed to treat neurological conditions in primary care, however this is not always appropriate for medicines for MS, which may need administering in specialist medical centres.
  • We highlighted that making treatments for neurological conditions available and affordable needs an integrated and coordinated approach led by the WHO, across its departments, member states, partner NGOs including patient organisations, and especially the private sector. We recommended that the industry producing these new treatments should take responsibility in planning and developing methodologies to ensure they are suitable for low-resource settings and allow equitable and affordable access. Unfortunately the role of the private sector/pharmaceutical industry was not included in the actions within the plan.
  • There was no mention of the importance of specialist nurses, who can positively influence the quality of life and wellbeing of people living with neurological conditions.
  • Whilst several actions are listed for improving national data and information systems, which MSIF strongly supports, the crucial need for funding this activity was not included.

For a detailed report about the intersectoral global action plan on epilepsy and other neurological disorders and how it relates to MS and MSIF, read the summary document here.