A ground-breaking report from Encephalitis International and its scientists has identified a range of difficulties and solutions to the global impact of encephalitis which could save lives and improve the treatment and after-care of millions of people today and into the future.
Encephalitis: an in-depth review and gap analysis of key variables affecting global disease burden
The report’s authors – Dr Julia Granerod, Alina Ellerington, Dr Nicholas Davies, Dr Benedict Michael, Professor Tom Solomon, Dr Ava Easton – launched this report to support the Code Red theme for World Encephalitis Day back in 2022.
Now, Dr Ava Easton, the report’s senior author, and Chief Executive of Encephalitis International, is calling for organisations around the world to unite and change the global landscape of encephalitis.
In February 2020, Professor Tom Solomon CBE and Dr Ava Easton went on a mission to the World Health Organisation where they presented a petition signed by 28,000 people in 128 countries calling for one-voice to agree that #EncephalitisMatters no matter where people live in the world.
Meanwhile, behind the scenes, they were busy working on this global baseline situational analysis of encephalitis, looking at a range of factors such as prevention, surveillance, incidence, mortality, morbidity, neurology training, and patient support and information among many other aspects of the condition.
In early 2021, the report was presented to Dr Tarun Dua, the head of the World Brain Health Unit at the World Health Organization (WHO). It was subsequently confirmed that the WHO would be keen to continue talks.
A working group was put together between the WHO and Encephalitis International and discussions have been progressing through 2021 and into 2022 resulting in the launch of the report and the announcement of a meeting in June via a correspondence piece in the Lancet Neurology.
This first meeting saw global partners and stakeholders, including the WHO, come together to discuss how to tackle encephalitis urgently in the coming years.
Discussions centred around creating a coalition of leading global health organisations, public health bodies and policy makers to take forward the findings of the Global Impact Report and improve the prevention, diagnosis and treatment of the condition, particularly in low-middle income countries.
In February 2022 the 180-page report was formally announced in Lancet Neurology.
In March 2022 a small global stakeholder event led by Encephalitis International was held to discuss the report and in June 2022 a two-day global stakeholder event on the report and encephalitis was hosted by the WHO. The report of the meeting was published on World Encephalitis Day 2023 (please see below Why Encephalitis Matters).
Following publication of the meeting report, a Technical Briefing will be created. A technical briefing is targeted to policy-makers, health programme managers and planners, health-care providers, researchers, people with the condition specified and their carers and will support the implementation of the intersectoral action plan on epilepsy and other neurological disorders
Dr Easton said:
“This will be a long journey but one which will no doubt be a jewel in the crown of Encephalitis International’s history. We are thrilled to have been the catalyst for these conversations and we are excited about changing the encephalitis landscape around the world for patients and families whose lives are often devastated by this indiscriminate condition.”
Why Encephalitis Matters
To coincide with World Encephalitis Day 2023, the WHO have released Why encephalitis matters? Report of the virtual meeting, 28-29 June 2022.
The report outlines the public health aspects of encephalitis including diagnosis, treatment and care, prevention, support for people with encephalitis and their carers, and advocacy/awareness as well as possible mechanisms to strengthen countries’ capacity to respond to the public health challenge posed by encephalitis, with an emphasis on Low-to-Middle Income Countries.
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