The article’s authors, including Nicoline Schiess, MD, MPH, technical manager, Brain Health Unit, Mental Health and Substance Use, WHO, and others, noted that the rapid increase in PD cases worldwide and the potential cost of necessary treatment , must be addressed in order to avoid potential strain on health services. “Across the board, governments, multilateral agencies, donors, public health organizations and health professionals are potential stakeholders called upon to make this a priority,” they wrote. In total, they identified 6 actionable courses of action in the areas of disease burden. advocacy and awareness; prevention and risk reduction; diagnosis, treatment and care; carer support; and research. To learn more about this effort, NeurologyLive® asked Schiess and colleagues, who offered their insights on what the community needs to know, how they can get involved in the effort, and the barriers that exist.
NeurologyLive®: What can the clinical community do to begin to effect change at the individual level based on these 6 pathways of action identified by the WHO for PD?
Schiess et al: The publication of “Six Action Steps to Address Global Disparities in Parkinson Disease: A World Health Organization Priority” is addressed to clinicians and researchers working in PD. The important message for the clinical community is that Parkinson’s disease is a growing global public health issue and there is an urgent need for a global public health response to address the health and social demands for people with PD. There are many areas in which clinicians can be involved. For example, contributing to capacity building, training and support for health workers in low- and middle-income countries. There are huge differences in the number of neurologists working in high-income countries versus low- and middle-income countries. This trend is the same for the entire neurology workforce which we define as adult neurologists, pediatric neurologists and neurosurgeons. Educating and supporting other health care providers, such as primary care physicians, nurses, physical and occupational therapists, radiologists, and psychologists, in the identification and management of neurological disorders is another approach that will help bridge the gap in treatment and care. Finally, research and advocacy are important ways in which the clinical community can be involved as well. The majority of research on neurological disorders comes from high-income countries. We do not know as much about these conditions in low- and middle-income countries. More data and research will help identify disparities within these areas.
Likewise, how can physicians take action to improve policy changes at the government and organizational level in their countries?
Advocacy and awareness: these are especially important as young people can also develop PD and gender and race differences can affect the likelihood of delays in diagnosis and care. This is often due to the misconception that PD only affects the elderly. Increasing advocacy and awareness can improve policy changes at the government and agency level. Prevention and risk reduction: There is a substantial need to identify risks for PD, especially those that we can mitigate. An example is exposure to pesticides. The evidence linking exposure to pesticides (eg, paraquat and chlorpyrifos) to the risk of developing PD is substantial and yet in many countries these products are still used.
Is there any hierarchy to these 6 steps in terms of creating long-term and short-term momentum to address these inequities?
Recently, the World Health Assembly adopted the Intersectoral Global Plan of Action on Epilepsy and Other Neurological Disorders, a 10-year plan with 5 major strategic goals. These include prioritization and governance. diagnosis, treatment and care; promoting brain health and preventing 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 WHO secretariat to address the challenges posed by neurological disorders. We hope that these actions will improve access to care and treatment, while reducing the mortality, morbidity and disability associated with neurological diseases. Emphasis is also placed on addressing the stigma and discrimination experienced by people with neurological disorders. In many cases, people cannot find work because of their condition, in other cases, people with neurological diseases such as Parkinson’s are shunned by their society because they are believed to have a contagious disease or to be possessed by witchcraft. Addressing these kinds of myths is very important in order to allow people with neurological disorders to be part of society. The action plan also includes a section addressing the needs of carers. Carers provide practical care and support and play an important role in organizing lifelong care. Caregivers have their own challenges, including stress, role pressure, financial burdens, social isolation and bereavement when loved ones are lost. We felt it was important to recognize the profound role of caregivers and try to help them as well in the neurology action plan.
What are some of the biggest challenges to creating change on a global scale on these issues?
In adults, disorders of the nervous system are the leading cause of disability-adjusted life years (DALYs) and the second leading cause of death worldwide, accounting for 9 million deaths annually. Of all neurological diseases, PD is the fastest-growing disorder in terms of death and disability—an 81% increase since 2000. Additionally, PD is estimated to have 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 needed to meet the health and social demands of people with MS and to improve function, quality of life and prevent disability as global longevity increases. There is also an urgent need for effective preventive actions to slow the rising incidence of the disease before the burden and cost of treatment overwhelms the country’s health services. Transcript edited for clarity. REFERENCES1. Schiess N, Cataldi R, Okun MS, et al. Six action steps to address global disparities in Parkinson’s disease: A World Health Organization priority. JAMA Neurol. 2022;79(9):929-936. doi:10.1001/jamaneurol.2022.1783
