Nicoline Schiess, MD, MPH, and colleagues offer insight into the recent publication of the World Health Organization’s 6 action steps aimed at addressing global disparities in individuals with Parkinson disease.
In early July 2022, the World Health Organization (WHO) published an article in JAMA that highlighted 6 action steps for the wider medical community to address some of the existing disparities for individuals with Parkinson disease (PD).1
The authors of the article, including Nicoline Schiess, MD, MPH, technical officer, Brain Health Unit, Mental Health and Substance Use Department, WHO, and others, noted that the rapid increase of cases of PD across the world, and the potential costs of necessary treatment, need to be dealt with in order to prevent possible health service strain. “Across the board, governments, multilateral agencies, donors, public health organizations, and health care professionals constitute potential stakeholders who are urged to make this a priority,” they wrote.1
All told, they identified 6 workable avenues for action within the domains of disease burden; advocacy and awareness; prevention and risk reduction; diagnosis, treatment, and care; caregiver support; and research. To find out more about this effort, NeurologyLive® inquired with Schiess and colleagues, who offered their insight into what the community needs to know, how they can get involved in the effort, and the existing barriers.
Schiess et al: The publication of “Six Action Steps to Address Global Disparities in Parkinson Disease: A World Health Organization Priority” is targeted towards clinicians and researchers who work in PD. The important message for the clinical community is that Parkinson disease is a growing global public health issue and there is a pressing need for a global public health response to address health and social requirements for people with PD.
There are many areas in which clinicians can be involved. For example, contributing to health workers’ capacity-building, training and support in low- and middle-income countries. There are tremendous disparities in the number of neurologists working in high income countries vs low- and middle-income countries. This trend is the same for the entire neurological workforce which we define as adult neurologists, pediatric neurologists and neurosurgeons.
Training and providing support to other health care providers such as primary care physicians, nurses, physical and occupational therapists, radiologists and psychologists, to identify and manage neurological disorders is another approach that would help bridge the gap in treatment and care.
Finally, research and advocacy are important ways that the clinical community can be involved as well. The majority of research on neurological disorders comes from high-income countries. We don’t know as much about these conditions in low- and middle-income countries. More data and research will help identify disparities within these regions.
Advocacy and awareness: these are particularly important since young people can also develop PD and sex and race differences can factor into the potential for delays in diagnosis and care. This is often due to the incorrect perception that PD only affects older people. Increasing advocacy and awareness can improve government and agency level policy changes.
Prevention and risk reduction: A substantial need exists to identify risks for PD, in particular the risks we can mitigate. One example is pesticide exposure. The evidence linking pesticide exposure (eg, paraquat and chlorpyrifos) with the risk of developing PD is substantial and yet in many countries these products are still being used.
Recently, the World Health Assembly approved the Intersectoral Global Action Plan for Epilepsy and Other Neurological Disorders, a 10-year plan with 5 large strategic objectives. These include prioritization and governance; diagnosis, treatment and care; promotion of brain health and prevention of neurological disorders; research, innovation and information systems; and strengthening the public health approach to epilepsy.
The action plan sets out actions for governments, international and national partners, and the secretariat at WHO to address the challenges posed by neurological disorders. We hope that these actions will improve access to care and treatment, while reducing mortality, morbidity, and disability associated with neurological conditions.
Emphasis is also given to addressing the stigma and discrimination suffered by people with neurological disorders. In many cases, people are unable to find work because of their condition, in other cases, people with neurological diseases such as Parkinson disease are shunned by their society because it is thought that they have a contagious disease or are possessed by witchcraft. Addressing these types of myths are very important in order to allow people with neurological disorders to be a part of society.
The action plan also has a section addressing the needs of caregivers. Caregivers provide hands-on care and support, and they play a significant role in organizing life-long care. Caregivers have their own challenges including stress, role strain, financial burdens, social isolation and, bereavement in the event of loss of loved ones. We felt that it was important to acknowledge the profound role of caregivers and to try and help them as well within the neurology action plan.
In adults, disorders of the nervous system are the leading cause of disability adjusted life years (DALYs) and the second leading cause of death globally, accounting for 9 million deaths per year. Of all neurological conditions, PD is the fastest growing disorder in terms of death and disability—an increase of 81% since 2000. Moreover, it is estimated that PD caused 329,000 deaths in 2019, an increase of more than 100% since 2000.
In the context of providing universal health coverage, an urgent public health response is necessary to meet the health and social requirements of people with PD and to improve functioning, quality of life and prevent disability as global longevity increases. A pressing need for effective preventive actions is also needed to slow the rising incidence of PD before the burden and costs of treatment overwhelm country health services.
Transcript edited for clarity.