The MSIF movement shapes the WHO’s global action plan for epilepsy and other neurological disorders

The development of a global plan to address the challenges of epilepsy and other neurological disorders was proposed in November 2020. Since then, MSIF has consulted widely with our MS community to review and provide feedback on this global plan. In our latest consultation response, we have highlighted key changes we believe should be made to the plan to ensure the best outcomes for people affected by MS across the world.

Why has the WHO written a global action plan for epilepsy and other neurological disorders?

The World Health Organization (WHO) is the United Nations agency that connects nations, partners and people to promote health, keep the world safe and serve the vulnerable – so everyone, everywhere can attain the highest level of health. There are also six regional WHO offices, covering Africa, the Americas, South-East Asia, Europe, the Eastern Mediterranean and the Western Pacific. These offices translate the global health initiatives set by the WHO into regional health priorities, and help countries collaborate to take action.

The development of a global plan to address the challenges of epilepsy and other neurological disorders was proposed at the 73rd World Health Assembly (WHA) in November 2020 by a group of countries (known as ‘member states’ in WHO terminology). Neurological disorders are the leading cause of disability and the second leading cause of death globally, accounting for 9 million deaths per year. Many people across the world living with neurological disorders do not have their needs met and there is considerable inequity.

How has MSIF been involved so far?

MSIF has worked with the WHO for many years – more recently in relation to the Atlas of MS and our application to try to add DMTs to the WHO’s Essential Medicines List. We have regular discussions with the staff from the WHO’s Brain Health Unit.

The WHO’s Brain Health Unit was tasked with producing the global action plan – and an initial discussion paper was made available to the public in April 2021.

MSIF provided feedback to the first discussion paper. Some of our comments were included in the draft plan, such as:

• A greater focus on treatment of neurological conditions – which was added to the vision, along with a greater emphasis on the role of medicines in places throughout the plan.
• A recommendation that the WHO’s Essential Medicine List is regularly updated with respect to treatments for neurological conditions, and that the WHO provides guidance for ensuring evidence-based guidelines are in place.
• The importance of transparency of regulation.

What did MSIF say in its response to the draft global action plan?

Following the first round of feedback, the draft global action plan was published in mid-June 2021.

In making our response to the WHO’s draft global action plan, we consulted with:

• representatives from MS organisations around the world – members of MSIF and more widely – from all six WHO regions
• people affected by MS
• our International Medical and Scientific Board, which includes the presidents of the five main regional Committees for Treatment and Research in MS (TRIMS)
• our International Working Group on Access, which includes representation from all six WHO regions.

We focused our response on some key areas that we believe need greater emphasis in the plan:

• How progress towards the global targets will be measured and monitored – both globally and regionally – and when the targets will be publicly reported on.
• The need for guidance on how to effectively and equitably involve people affected by neurological disorders when implementing actions in the plan.
• Improving access to treatment:
  • The need for an integrated and coordinated approach across the WHO’s departments, member states, partner NGOs and the private sector to make treatments for neurological conditions available and affordable.
  • The private sector, including the pharmaceutical industry, should address availability, cost and affordability of medicines to treat neurological conditions.
  • The WHO Secretariat, working in collaboration with relevant organisations, should actively expand the number of essential medicines for neurological conditions listed on the Essential Medicines List.
  • More emphasis should be placed on actions that support access to rehabilitation.
• More emphasis should be placed on actions that support access to rehabilitation.
• Building capacity in member states for neurological data collection, storing and sharing.

Read our full response here. Feedback from the second round of consultation will shape the final version of the plan, which will be considered at the 75th WHA in May 2022.