The Need for a Global Neurology Alliance

I guess stroke survivors are about as useless as a laboratory rat.  I see nothing here that is going to help stroke survivors. With no mention of creating a strategy to solve stroke or any neurological disease just putting together these impressive initials will do nothing, but I guess that is the point; 'All hat, no cattle'.

This just proves once again what Amy Farber has to say. For the past five years Farber has been battling not only her own disease but also the wall of resistance erected by those who believe that a patient can make about as much of a meaningful contribution to the process of scientific discovery as a laboratory rat.

The Need for a Global Neurology Alliance 

Original article by W. (Bill) M. Carroll, MB, BS, MD, FRACP, FRCP(E) published 7 June 2017 in World Neurology Vol 32 No. 3

---

William Carroll, MD

Recently, there has been an explosion of health awareness recognised by individuals, nations, and the global community. The decade of the brain was followed by the human genome project, accompanied by the near eradication of malaria and polio. Yet, we now stand at the threshold of even more rapid advances on many fronts.

3-D printing of the human heart is being used in planning cardiac surgery. Next-genome sequencing is revolutionising old concepts of disease. Gene therapy shows success in some inherited neuropathies (spinal muscular atrophy) and myopathies (Duchenne muscular dystrophy). Precision medicine is no longer an aspiration in some diseases and countries, and the ability to use publicly accessible data via expanding cloud technologies is yielding unexpected information and the repurposing of medications. Conversely, the cost of drug development, especially in bringing them to market, is becoming prohibitive, exacerbating the accessibility of therapies in many countries.

For the thoughtful and the less fortunate, it is obvious that the developing progress, while exciting and to be celebrated, is creating problems that need to be addressed. The increasing burden of non-communicable diseases (NCD) adds up to what can only be viewed as a potential tsunami for the economies of the world. These NCDs include mental (neurological) and substance-abuse disorders; musculoskeletal disorders; neurodegenerative conditions such as dementia, stroke and Parkinson's disease; poor lifestyle choices in diet and exercise; and the effects of unhealthy environments¹ together with the changing demographic of ageing populations in so-called developed countries.

Those people and countries least able to afford the advances and/or mobilize services to adjust to them will see a widening gap, not only in these areas of disease but also in their ability to respond to the periodic recrudescence of infectious disease. This was seen with the outbreaks of Ebola, MERS, SARS, and, most recently, the Zika emergency. It is not by chance that the recent waves of mass migration have occurred as much because people seek better lifestyles (and health services) as fleeing armed conflict.

It is in this environment that those in the neurological fraternity need to mobilize and prepare measures at a number of levels that will mitigate the consequences of these changes. To begin, we must look at the magnitude of the problems facing us. Then, we will evaluate the resources we have available. Finally, we will view three illustrations of how those resources can be optimised to provide the organizational readiness for rapid and effective action as well as long-term planning on a national, regional, and global scale.

The Problem

The global burden of neurological disease figures as a relatively small fraction of the global burden of all disease (GBD) for a range of reasons². Although not included in the WHO 2014 global status report on NCDs³, stroke and dementia are of major concern to clinicians and national health systems.

The annual stroke toll is approximately 15 million, with one-third being fatal and another third permanently disabling. Indeed, stroke mortality is double that of HIV/AIDS, malaria, and tuberculosis combined, emphasising the rising burden of brain NCDs. With rates of dementia estimated to triple from 47.5 million to 115 million worldwide by 2050^4, it is clear that the world faces a rising impost on resources.

Currently, the total burden of mental, neurological, and substance abuse (MNS) is now reckoned to be 258 million disability-adjusted life years — a measure of overall disease burden expressed as the number of years lost due to ill health, disability, or early death. That is up from 182 million in 1990, which has been equated to a $8.5 trillion (U.S.) loss of economic value now, and which will increase again by a factor of two by 2030⁵.

With the addition of other NCDs to stroke and dementia, it is clear that the world neurological fraternity must act in concert and alert governments. Those other NCDs include age-related Parkinson's disease and other chronic neurodegenerative disease, perinatal injury largely due to asphyxia, childhood developmental and degenerative disease, schizophrenia, high levels of traumatic brain disease, all causes of epilepsy, substance and alcohol abuse, and rising neuroinflammatory disease of the brain and spinal cord.

While world neurological expertise has been steadily advancing partly in parallel with the recognition of the increasing challenges on the horizon and partly with the advances in medical science, it is far from equitably distributed. When the widening gap between well-developed countries with comprehensive health care and those less developed populations and health care systems is appreciated, the likelihood for an emergency is evident⁶.

Resources

There are a number of valuable resources available. These include measures of the GBD and specific problem areas, such as the NCDs, BNCDs, and MNSs, as well as WHO monitoring for more acute challenges to health through national health departments and WHO's regional structural organization. (The WHO regional organization mirrors approximately that of the WFN). The periodic assessments of the GBD by the WHO and the Atlas of Neurology (a joint WHO-WFN project) provide the broad sweep, big picture view of resources and needs.

The WFN itself plays an important and growing role in the equalisation of access to neurological care both through regional organization support and neurological education. The establishment of the African Academy of Neurology (AFAN) and its first meeting in Tunis this year are illustrative. It joins the expanding roles of other WFN regional organizations, including the Pan American Federation of Neurological Societies (PAFNS), the Australasian and Oceanian Association of Neurology (AOAN), the Pan Arab Union of Neurological Societies (PAUNS), the American Academy of Neurology (AAN), and the European Academy of Neurology (EAN).

Neurological training, the improvement in access to neurological care, and an increasing awareness of the importance of brain health in the general population are furthered by World Brain Day (WBD)⁷ and the biennial World Congress of Neurology (WCN). The WFN, in partnership with AFAN, has followed the World Federation of Neurosurgical Societies (WFNS) program to train young African specialists. The WFN plans to have four regional training centers in Africa — two each for the Francophone and Anglophone regions. Additional emphasis of WFN involvement at a global level was given by WFN President Raad Shakir as chair of the Neurosciences Topic Advisory Group for the WHO-sponsored International Classification of Disease (ICD-11), due for release in 2018.

More generally, other areas are developing, which will enhance the ability to respond to challenges. Increasingly rapid communication through electronic media, including social media, draws attention to emerging problems. The maturation and expanding expertise of neurological subspecialties and their involvement in wider educational activities (e.g. the International League Against Epilepsy, the World Stroke Organization, and the Movement Disorders Society) as well as the added interest of the larger regional neurological organizations, such as the AAN and EAN, provide a rich resource of intellectual and monetary capital.

Over the last few years, the WFN has provided a focal point for those involved in the medical care of neurological disease through two similar, though importantly different, groups. The first is the World Brain Alliance (WBA). Originally chaired by Vladimir Hachinski, MD, when he was WFN president, it is now chaired by Dr. Shakir. The WBA members include, in addition to the WFN, global organizations that usually do not include neurologists, such as the WFNS, the International Brain Research Organization (IBRO), the World Psychiatric Association (WPA), the International Child Neurology Association (ICNA), and the World Federation of Neurorehabilitation (WFNR). The second group is the Global Neurology Network (GNN) for which the WFN is the current convener and whose members mainly include neurological disease-specific organizations from around the world. Many were originally part of the WFN but have grown to be independent organizations. They include the World Stroke Organization (WSO), the International League Against Epilepsy (ILAE), the Multiple Sclerosis International Federation (MSIF), the Treatment and Research in Multiple Sclerosis (TRIMS) Group, Alzheimer's Disease International, the Movement Disorder Society, the International Headache Society, the International Society for Clinical Neurophysiology, the Peripheral Nerve Society, and the Tropical Disease Group. Closely associated with this category of disease-specific organizations are both large regional organizations supporting all neurological subspecialties, such as the AAN and the EAN, and the smaller WFN-affiliated regional organizations, such as the AOAN, PAUNS, PAFNS, and AFAN.

Together, these two groups create an impressive global alliance of neurological expertise. It is an alliance appropriately suited to provide global disease-specific advice to international organizations, such as the WHO and the U.N., and to advocate with these organizations and national governments. It is an alliance worthy of the term Global Neurology Alliance.