The development of a global plan to address the challenges of epilepsy and other neurological disorders was proposed in November 2020. Between then and its final adoption at the World Health Assembly in 2022, MSIF consulted widely with our MS community to review and provide feedback on the earlier drafts of the Intersectoral Global Action Plan for epilepsy and other neurological disorders (IGAP).
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.
We 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.
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, to which we provided feedback. Following the first round of feedback, the draft global action plan was published in mid-June 2021, and you can read our response to this draft here.
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.
Following both rounds of feedback, some of MSIF’s recommendations were incorporated into the global action plan.
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.
How to use the IGAP for advocacy
Resources and advice on how to use the IGAP to support advocacy activity will be coming soon.