The One Brain, One Health Manifesto outlines strategy through 2031.

Matilde Leonardi

By Matilde Leonardi and Alessandro Padovani

Globally, brain diseases represent the leading cause of disability and the second leading cause of death, with a burden expected to increase with the growth and aging of the population. These pathologies already pose a significant burden on health care systems today, and all estimates show that, without the appropriate interventions, the situation is destined to worsen in the coming years.

Faced with this epidemiological picture, the World Health Organization (WHO) has developed and provided the world with the Global Action Plan on Epilepsy and Other Neurological Disorders (IGAP). The plan was  endorsed by all member states at the World Health Assembly in 2022, and calls for radical change with respect to brain health and neurological disorders.

The Italian Strategy for Brain Health.

The Società Italiana di Neurologia (SIN) intends to implement the WHO Global Action Plan in Italy through the Italian Brain Health Strategy 2024-2031, launched in March during World Brain Week 2024. The strategy serves as a starting point for a reflection that involves all national stakeholders on the possible interventions to be implemented in the fields of health planning, prevention, research, diagnosis, treatment, rehabilitation, and social issues.

The SIN adopts the definition of “brain health” provided in the IGAP by the WHO as a condition in which “each individual can realize his or her capabilities and can optimize his or her cognitive, emotional, psychological, and behavioral domains to deal with life situations,” in the belief that an overall approach to all these aspects can improve the mental and physical well-being of the individual and reduce the impact of brain diseases on patients, caregivers, the health care system, and the social and economic fabric.

To spread this approach to brain health, the SIN intends to start a fruitful comparison with the so-called “6 Ps.” They are:

• Patients (patient and family associations)
• Health Care Professionals
• Providers (of public and private health and social services, therapies, and technologies)
• Partners (scientific societies, universities, and research institutes)
• Politicians (decision makers and financiers of public policies and institutions)

Program cover of the One Brain, One Health meeting.

The General Population

The Italian approach promoted by SIN finds space in the Italian Manifesto, “One Brain, One Health,” presented to the Chamber of Deputies with dozens of institutional representatives in March. The manifesto outlines the key points of the Italian Strategy for Brain Health 2024-2031 and identifies the priorities for action to be implemented in the coming years with the collaboration of all the actors in the social and health care panorama — in particular all the parties involved in various capacities in brain health.

The manifesto considers the brain as a single complex system in relation to the physical and social environment, where the two components operate together and influence each other. One brain therefore means that each person’s brain and mind are strongly connected with the brains and minds of all others, and that the health of the brain, therefore, is equivalent to the health of the community. One health is based on the recognition that human health, animal health, and ecosystem health are inextricably linked and therefore support the existence of a single health, where no component predominates over the others and all are closely connected and interdependent.

The Italian Strategy for Brain Health 2024-2031 is also in line with the global WHO IGAP implementation plans, promoted by the World Federation of Neurology (WFN) and promoted by the European Academy of Neurology (EAN), which launched its Brain Health Mission in 2022.

The primary objective of the Italian Strategy is to create awareness about Brain Health throughout the country and start the implementation of initiatives to prevent and combat the development of mental and neurological diseases. The WHO IGAP provides a clear and precise map of actions that each country will need to take to optimize brain health.

The “One Brain, One Health” Manifesto — in total harmony with what is contained in the WHO IGAP — allows us to define a work plan in line with the WHO global strategy and to place brain health and the reduction of the burden of brain diseases as Italian priority for the coming years. The Italian Brain Health Strategy 2024-2031 is thus in line with the global WHO IGAP implementation plans, promoted by the WFN and the EAN.

Representatives of the WHO, WFN, and EAN.

With the Italian Brain Health Strategy, our country has the opportunity to be among the first to adopt concrete solutions to enhance, promote, and protect the brain throughout the entire lifespan and in all segments of the population, because brain health plays a fundamental role at any age and for every person, regardless of social and geographical conditions. To face this enormous challenge, different actions are needed to increase awareness, education, research, but also to create new integrated public health approaches (Global Health) and boost the empowerment of people. Collaboration between those who deal with the different fields of neurology, psychiatry, neuropsychiatry, psychology, neurorehabilitation, and in general, research and treatment in neuroscience is an essential requirement to improve the effectiveness of interventions and to reduce the impact of neurological and mental pathologies.

During the event held at the Italian Parliament in front of the Minister of Health, representatives of WHO, WFN, and the EAN (Dr. Devora Kerstel, Prof. Wolfgang Grisold, and Prof. Paul Boon), Parlamentarians, and representatives of more than 18 scientific and patient organizations, the manifesto was signed, and Italy is ready to work on its implementation to promote brain health and to fight the burden of neurological disorders. •

Matilde Leonardi is Società Italiana di Neurologia (SIN) board member, and Alessandro Padovani is SIN president.

Directory items for easy navigation on the WFN e-Learning Hub.

Visitors can get free access to global virtual education.

Morris Freedman, Surat Tanprawate, Chiu Keung Man, Steven Lewis, Wolfgang Grisold

The World Federation of Neurology (WFN) has launched its novel e-Learning platform, which offers free access to a broad spectrum of high-level educational material in neurology for health care professionals. Branded as the WFN e-Learning Hub, this platform has been designed as a full-access electronic library that includes WFN programs. It also features external material from centers across the globe, such as teaching rounds, seminars, webinars, lectures, master classes, and related academic activities.

The WFN e-Learning Hub serves as a one-stop shop to access this material by simply clicking on links to archived videos. For programs involving the WFN, these include the World Congress of Neurology, WFN Digital Neurology Update, WFN-AFAN e-Learning Day, WFN-AOAN e-Learning Day, International Congress on Neuromuscular Diseases, and Education in Headache to Health Care Providers in Africa.

Videos by topic can be searched for, such as this video of Suvarna Alladi.

As the WFN e-Learning Hub grows, with more sites contributing to its archived educational videos, it will be poised to become the go-to website where health care professionals from all countries will be able to access free educational material on any topic of their choice. Moreover, new content will be added on a regular basis.

The WFN e-Learning Hub features a broad spectrum of topics. Clicking on any of the menu items will open a page with access to recorded videos within this topic area. These videos will be focused on events organized by the WFN or in collaboration with the WFN. The hub also includes information on special educational days as well as External Resources.

Sample video page of Prof. Wolfgang Grisold’s welcome address at the WFN-AOAN e-Learning Day.

Videos related to a specific topic, such as Prof. Suvarna Alladi speaking on Advocacy in Dementia at WCN in 2021, can also be found on the site.

Visitors can view videos from previous events, such as Prof. Wolfgang Grisold giving a welcoming address during the WFN-AOAN e-Learning Day in 2023 with the theme of advancing stroke care in Asia.

External Resources, the lower button on the upper left side of the hub, opens a web page from sites outside of the WFN. We invite organizers of educational events from WFN member societies, academic institutions, and hospitals across the world to submit requests for a link to their archived programs for posting on the WFN e-Learning Hub. These requests, as well as questions, should be sent to Dr. Surat Tanprawate, chair of the e-Communications & e-Learning Committee. His email address is surat.md@gmail.com.

The External Resources menu item provides links to resources outside of WFN.

Access to the WFN e-Learning Hub is open to all health care professionals. The hub can be accessed by clicking on the Education tab on the WFN website or directly here.

Acknowledgements

We gratefully acknowledge the current WFN trustees: Maria Benabdeljlil, Alla Guekht, Minerva López Ruiz, Chandrashekhar Meshram, Guy Rouleau, and Mohammad Wasay, as well as the former WFN trustees: William Carroll, Walter Struhal, and Marianne de Visser for their contributions to the development of the WFN e-Learning Hub. •

Morris Freedman is treasurer of the WFN, Surat Tanprawate is chair of the WFN e-Communications & e-Learning Committee, Chiu Keung Man is WFN Digital Content and IT Management consultant, Steven Lewis is secretary general of the WFN, and Wolfgang Grisold is president of the WFN.

The American Academy of Neurology (AAN) and the World Federation of Neurology (WFN) will host the first global advocacy leadership program for low- and low-middle-income countries. This is the first global advocacy leadership program created exclusively for neurologists. It will include exciting in-person and virtual training sessions from San Diego to Seoul and will include several units of personal training and a faculty composed of worldwide, experienced advocates for neurology.

For 20 selected individuals, all costs will be included. Please see our joint announcement and go to //AAN.com/GALP to find out if you are eligible.

A WFN-AOAN session provides a call for action to leaders in global neurology.

By Tissa Wijeratne

Participants at the WFN-AOAN session focusing on the WHO Intersectoral Global Action Plan (IGAP).

At the 65th Japanese Society of Neurology and 19th Asian Congress of Neurology (AOCN2024), the WFN-AOAN session focused on the WHO Intersectoral Global Action Plan (IGAP) and its implications, urging key opinion leaders in global neurology to take action. This session was chaired by Profs. Hamidon Basri, AOAN president, and Ryosuke Takahashi, from Kyoto University and the Japanese Society of Neurology.

WFN President Prof. Wolfgang Grisold explained the WHO IGAP to the delegates, encouraging an interactive discussion. WFN Trustee Prof. Mohammad Wasay provided insights into the status of the WHO IGAP, specifically in the Asia-Oceania region. Dr. Augustina Charway-Felli presented data on African neurology and the IGAP, highlighting regional challenges and progress.

Prof. Sarangerel Jambal, president of the Mongolian Neurological Society, gave a comprehensive overview of neurology in Mongolia, detailing the unique aspects and challenges faced in the country.

Prof. Tissa Wijeratne, co-chair of World Brain Day (WBD), traced the evolution of WBD from its inception to the upcoming WBD 2024. He emphasized the importance of embracing WBD and prioritizing preventative brain health across the region. This call for action was strongly supported by all speakers, highlighting the significant impact of advancing brain health initiatives in the Asia-Oceania region.

The session underscored the critical need for collaboration among global neurology leaders to address neurological disorders effectively. By adopting and promoting the WHO IGAP, the session aimed to mobilize efforts toward improving neurological health outcomes, emphasizing the importance of preventative measures and international cooperation. The discussions highlighted the diverse perspectives and regional insights, fostering a unified approach to tackling global neurological challenges. •

Prof. Tissa Wijeratne is co-chair of World Brain Day.

On the left, Christopher Luxon, Prime Minister of New Zealand, presenting the Ryman Prize for the “world’s best development, advance, or achievement that enhances quality of life for older people” to Prof. Vladimir Hachinski. Congratulations to Prof. Hachinski.

More than 250 participants and speakers bring updates on Parkinson’s disease, migraines, and more.

Marianne de Visser

Rajeev Ojha

Rajeev Ojha and Marianne de Visser

I was fortunate to be invited to the First International Congress of Nepalese Academy of Neurology May 18-19 in Kathmandu, Nepal. Sessions on major neurological disorders, such as stroke, movement disorders, demyelinating disorders, epilepsy, headache, and cognitive neurology filled two conference days. There were also sessions on neuromuscular disorders and general neurology. Plus, there were posters and oral communications presented by early-career neurologists and residents. Dr. Rajeev Ojha, co-author of this report, was instrumental as one of the organizers of the congress, and he invited me to participate in the congress.

When I was on stage for my talk, I conveyed a message from WFN President, Prof. Wolfgang Grisold, in which he congratulated the president of the Nepalese Academy of Neurology on this unique event. It was a splendidly organized congress in a beautiful hotel in the center of Kathmandu, thanks to the assistance of the upcoming neurological generation and volunteers from the medical school. There were more than 250 participants and many speakers from abroad, including India, Malaysia, the Netherlands, Spain, and the United States.

Prof. Marianne de Visser giving a lecture during the neuromuscular session of congress on the second day.

During breaks between the sessions, there was plenty of time for networking. We were able to discuss how training in neurology and neurological care was organized in Nepal. The standard of care in Nepal is impressive considering that according to the World Bank it is a low- and middle-income country. MRI and endovascular interventions are readily available. However, the cost of thrombolysis and mechanical thrombectomy is high, and the insurance service is not available to most of the general public.

Prof. Shen-Yang Lim, co-lead of monogenic portal development and underrepresented populations for the East Asia branch of the Global Parkinson´s Genetics Program (GP2), congratulated Nepal on being connected to the GP2, which is a collaborative research program to understand the genetic architecture of Parkinson´s Disease. Dr. Avinash Chandra from Nepal highlighted how oral abortive treatments for migraine, such as rizatriptan and sumatriptan, have been available for a few years and recently zolmitriptan has been made available in nasal spray.  On the other hand, local speaker Dr. Niraj Gautam spoke about the unavailability of monoclonal antibodies used in the treatment of multiple sclerosis in Nepal. Prof. Lekha Pandit, from India, and Prof. Xavier Montalban, from Spain, presented an excellent diagnosis update and a discussion about the management of multiple sclerosis, respectively.

Right Honorable Vice President of Nepal, Mr. Ram Sahaya Prasad Yadav, congratulating first Nepalese neurologist Prof. Dinesh Bikram Shah during the inauguration ceremony of First Nepalese International Congress 2024.

The organizing committee included a neuromuscular session in the program. I selected myositis as a topic. Another speaker in that session was Prof. Nalini Atchayaram, from India, who gave a presentation on Hirayama disease, a disorder that should not be missed because it is treatable by surgery and may mimic ALS. She cited studies composed of hundreds of patients with this disease who, if diagnosed early, usually had excellent outcomes.

The other speakers gave excellent presentations on the diagnostic approach of muscular dystrophy (Dr. Saraswati Nashi, also from India) and on ocular myasthenia gravis (Prof. Rabindra Shrestha, from Nepal). Part of the congress was dedicated to an amazing cultural event with dancing and singing by local dancers in traditional costumes from different regions across Nepal.

All in all, this was an extremely inspiring and memorable congress that also put early career neurologists in the spotlight. During the breaks, many neurologists were willing to share the history of neurology becoming a separate discipline in Nepal and how they managed to establish three training centers across Nepal. There is an urgent need for training more neurologists (currently four residents per annum), since Nepal currently has 35 neurologists for a population of 31 million inhabitants.

I am indebted to the organizers of the congress, in particular to NAN President Prof. Kumar Oli and Secretary General Prof. Rabindra Shrestha. To my esteemed colleague and co-author, Rajeev Ojha, and to everyone who made my first visit to Nepal an incredible experience, I would like to express my sincere gratitude. •

Marianne de Visser, MD, PhD, FEAN, is a neurologist at Amsterdam University Medical Center in the Netherlands, and emeritus professor of neuromuscular diseases. Rajeev Ojha, MD, DM, FEBN, is a lecturer in the department of neurology at Tribhuvan University Institute of Medicine in Kathmandu, Nepal.

Partnerships could lead to new treatments and improved patient care.

Christina Briscoe Abath, MD, EdM, and Keryma Acevedo, MD

Keryma Acevedo, MD

Christina Briscoe Abath, MD, EdM

Although it has gone by many other names, infantile epileptic spasms syndrome (IESS) has been described since 1841. It is the most common infantile-onset epilepsy syndrome, and first-line treatments are over 40 years old. Steroids (prednisolone or ACTH) have been used since the 1950s, and vigabatrin has been used since the 1980s. The newest effective treatment for some children, epilepsy surgery, has been prescribed for epileptic spasms since 1990.¹ There has been consensus about the initial treatment for over a decade, as well as recognition that the lead time to standard treatment affects long-term developmental outcomes.^2,3 Treatment initiation of first-line therapy is considered a priority for the clinical team.

Despite this, most children in the world continue to have long delays in diagnosis. Although present in most settings, these delays are not equally distributed. In a large series from Bangladesh, the median lead time to a standard therapy was 5 months.⁴ Even in Boston (U.S.), the average lead time to standard therapy was 29 days.⁵ In the U.S., BIPOC (Black, Indigenous, and People of Color) infants, and those whose caregivers speak another language, are more likely to have delays to neurology referral.^6,7

Just as disturbing, not all children who are correctly diagnosed will receive appropriate treatment despite consensus about standard therapies. At quaternary care centers in the U.S. with pediatric epileptologists, Black/Non-Hispanic children and those with public insurance are less likely to receive a standard treatment course.⁸

In many countries, standard therapies are not always readily available. In Chile, for example — despite access to pediatric neurologists and similar delays to diagnosis as in Boston — challenges with access to standard treatments in the public system mean that between 2015-2022, only 67% of children received a standard treatment course.⁵ Moreover, anti-seizure medications (ASMs) for IESS are not covered by the National Epilepsy Plan, resulting in an extremely heavy economical overload for families.^9,10

On top of these issues, ACTH and vigabatrin have not been consistently available, and prednisolone has not been incorporated in the country’s list of approved drugs. This means that prednisolone is not available for purchase in Chile, resulting in families needing to go to Perú or other countries to buy the medication if indicated by their clinical team.¹¹ Efforts are underway to address these challenges with the Ministry of Health.

Hypsarrhythmia, initially described by Gibbs and Gibbs in 1952 (spelled as hypsarhythmia), is the classical interictal background pattern found in children with infantile epileptic spasms syndrome (IESS). It is high voltage, chaotic, and has embedded multifocal epileptiform abnormalities. Hypsarrhythmia may be state dependent, and only present in sleep. While no longer required for IESS diagnosis, when present it can suggest a diagnosis when accompanied by history concerning for epileptic spasms in children of the appropriate age (1-24 months).

Partnering Together for Solutions

New therapies and research to understand mechanisms of disease for IESS are certainly needed, since only around half of children will respond to the first standard therapy and only around 70% will respond to early sequential or dual therapy.^12,13 For this, significant increases in research for pediatric epilepsy are needed, given significant disparities in funding.¹⁴ The U.S. National Institutes of Health (NIH) spent approximately $68 per person with epilepsy in 2023 ($232 million for 3.4 million individuals in the U.S.).^15,16 In contrast, ALS receives $9,512 per person, Alzheimer’s $583 per person, and Parkinson’s disease $270 per person.¹⁶ Inadequate funding for drug research and development may be one reason why there have been no new first-line medications approved for IESS since the 1980s.

However, the percentage of children who do respond means that most children will still benefit from what we currently know and can apply appropriately.¹³ Given the high morbidity and mortality of IESS — with a 5-10% chance of response to a non-standard therapy — standard therapies are most likely cost-effective for public systems. Research should be done to support this supposition. We do know that epilepsy surgery is cost-effective for epilepsy, though cost-effectiveness specifically for epileptic spasm surgery has not been specifically assessed to our knowledge.^17,18

Intervention is needed at every level of health systems to effectively address these gaps in diagnosis and therapy. In May 2022, the Intersectoral Global Action Plan on Epilepsy and Other Neurological Disorders (IGAP) was unanimously approved at the 75th World Health Assembly, providing an invaluable tool to advocate for treatment and access around the world.^19,20

Joint efforts are needed to improve the standard of care for IESS, including early diagnosis, training general practitioners and pediatricians about adequate referral for suspicious clinical events, education of parents of children at high risk for IESS (Down Syndrome, Tuberous Sclerosis, Hypoxic Ischemic Encephalopathy), and access to standard treatments.

Families of children who have been affected by IESS are uniquely motivated to address these challenges. Partnering with these families to advocate for awareness and access to therapies is also needed. At a micro level, social media campaigns can promote epileptic spasm awareness. At the middle level, medical and other professional schools should incorporate pediatric epilepsy education (more common than other conditions that receive more attention). At a macro level, health systems should prioritize access to cost-effective epilepsy medication and therapies (including epilepsy surgery).

Much remains to be done around the world. In the U.S., one of the authors (CB) has been fortunate to start to work with the Infantile Spasms Action Network, parents of children with IESS, and other neurologists who are passionate about closing the equity gaps. We have created a module for primary care providers to recognize epileptic spasms and are working on a series of grassroots initiatives (a children’s book and a stuffed bear with EEG electrodes) to promote pediatric epilepsy awareness in Spanish, French, and English.

In Chile, the Chilean League Against Epilepsy (LICHE) is a non-profit organization that has several pharmacies distributed around the country that not only provide social benefits and discounts in ASMs, but also act as an intermediary to import medications to collaborate in the management of epilepsies, partnering with patients and their neurologists. As a PAHO/WHO Collaborating Centre, LICHE is committed with advocacy and education for patients, their families, caregivers and the community.

We believe collaboration, funding, and advocacy will be essential to making progress for children with IESS around the world. Please reach out to us with ideas, comments, and questions at:  christina.briscoeabath@childrens.harvard.edu and kacevedo@uc.cl. •

Christina Briscoe Abath, MD, EdM, is incoming instructor of neurology, Boston Children’s Hospital. Keryma Acevedo, MD, is associate professor, Section of Neurology, Division of Pediatrics, Pontificia Universidad Católica de Chile, and president of the Chilean League Against Epilepsy

References

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2. O’Callaghan FJK, Lux AL, Darke K, et al. The effect of lead time to treatment and of age of onset on developmental outcome at 4 years in infantile spasms: Evidence from the United Kingdom Infantile Spasms Study. Epilepsia. 2011;52(7):1359-1364. doi:10.1111/j.1528-1167.2011.03127.

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16. RePORT. Accessed January 15, 2024. https://report.nih.gov/funding/categorical-spending#/.

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