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 20504, 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.