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The need for global access to medicines for Parkinson’s disease
By guest contributor Tash Fothergill-Misbah
“Medications have given me the freedom to go outside and walk. My body is happy now.” –person with Parkinson’s in Tanzania interviewed for ‘UHURU’ documentary.
Parkinson’s disease is a neurodegenerative condition that increases in prevalence with age. There is no cure for Parkinson’s disease, though the mainstay of medication – levodopa + dopa decarboxylase inhibitor – has been used for over 50 years and is effective in managing symptoms and improving quality of life. Parkinson’s disease has historically been perceived as a disease of high-income countries, resulting in a misperception that it is ‘uncommon’ or ‘does not exist’ in low- and middle-income countries. Through research, advocacy, policy work and documentary filmmaking, my colleagues and I have been working to raise the profile of the issue of global access to medicines for Parkinson’s disease and to effect change.
The world’s population is ageing rapidly. Over the next few years, 1 in 6 people globally will be aged 60 years and over and, by 2050, it is predicted 80% of the world’s older people will be living in low- and middle-income countries [1]. However, globally (and especially in LMICs), health and social care systems remain unprepared for this demographic shift, and the associated epidemiological shift that will undoubtedly follow.
Neurological disorders are the leading cause of years of life lost and disability-adjusted life years globally [2]. Over 1 in 3 people will have a neurological disorder in their lifetime, and Parkinson’s is amongst the fastest growing conditions. The reality is that 70% of people with neurological disorders live in low- and middle-income countries where high burden of disease is compounded by poverty and health inequities [3]. A contributing factor to this high burden of disease is the significant ‘treatment gap’ for neurological disorders – this means the disparity between the number of people living with a neurological condition and those receiving appropriate treatment for their condition. Shockingly, the treatment gap exceeds 75% in low-income countries despite the existence of effective medicines [4], including cheaper generics and biosimilars.
In response to the growing burden of disease, in 2022 all Member States of the World Health Organization (WHO) adopted the ‘Intersectoral Global Action Plan on epilepsy and other neurological disorders’ 2022-2031 (IGAP) at the 75th World Health Assembly. IGAP aims to improve access to care and treatment for neurological disorders globally – a significant challenge when access to life-saving medicines is so limited.
There are multiple reasons why the accessibility of medicines for neurological disorders is so low and why treatment gaps persist. WHO have developed a pathway [4] that shows that in order to make neurological medicines accessible (i.e., available and affordable), multiple health system components need to be functional. Though IGAP and this report on improving access to medicines are timely and welcome, tackling access will not be easy. From raising awareness, to registering essential medicines and training healthcare personnel, collective and continued action is needed for individuals to access sustainable and affordable medicines. In Kenya, for example, medicines for Parkinson’s disease cost up to $82 for 1 month’s supply, i.e., unaffordable [5].
“The condition is continuing. So, you drain, you drain, you drain [resources], borrow, borrow, borrow [money]. You have not paid the money back and the drug is finished again. We have cows, we have sold them. You sell a plot of land. If at the month’s end you don’t have $400, [person with Parkinson’s] won’t survive.”
Caregiver of person with Parkinson’s from Kenya, quote from Fothergill-Misbah et al., (2024) [6]
Even if medicines were affordable, they are unavailable in pharmacies – as few as 6% of facilities in Kenya stocked one formulation of levodopa. As a result, persons with Parkinson’s progress untreated with severe consequences on their health and quality of life, implications for families, and often perpetuating stigmatising beliefs.
“After I stopped [my medication], my symptoms got worse. I couldn’t even get out of bed. I couldn’t walk. I couldn’t afford the medicines, and my family wasn’t able to support me. I can’t manage to pay school fees for my son and also go to hospital”.
Person with Parkinson’s from Kenya, quote from Fothergill-Misbah et al. (2024) [6]
In addition to publishing on the issue of access to medicines, particularly in Kenya, I have had the opportunity to advocate for persons with Parkinson’s through documentary film as a powerful tool to inform and inspire. ‘Shaking Hands With The Devil’ is an award-winning documentary released in 2023 that gives voice to people with Parkinson’s living in the coast of Kenya, specifically highlighting the stigmatisation and persecution people experience because of their condition [7], as well as the challenge of accessing medications. ‘UHURU’, released in 2025, is an award-winning intimate and emotive portrayal of life with Parkinson’s disease in Tanzania – told in Swahili through the stories of those affected – showing the positive impact of access to life-changing medication and support on well-being.
“I am happy now since I started these Parkinson’s medications. In three days, my legs were filled with strength completely. I have no pain, and I have started walking. My body is happy now.”
Person with Parkinson’s in Tanzania interviewed for ‘UHURU’ documentary
The goals of the engagement work through documentary film are manifold. Primarily, the films are raising awareness of the challenges faced by persons living with Parkinson’s in Africa, and globally. The films also provide real life narratives to support the research and policy evidence; a platform for further dialogue; an opportunity to fundraise; and a call to action. People with Parkinson’s have a right to be able to access the medication they need to survive and live well, no matter where they are. There is a moral and ethical obligation to fight for the rights of persons with Parkinson’s across the world who often do not have a platform to advocate.
There are positive examples of change occurring at a policy and grass roots level. For example, countries are taking action to register essential Parkinson’s disease medications, while support groups are driving awareness initiatives in local communities – particularly as World Parkinson’s Day approaches on April 11th.
In conclusion, enabling access to medicines for Parkinson’s disease globally is essential. Change can happen, as it has for other chronic, non-communicable diseases, and should build on the momentum of IGAP; if not now, when? Governments must pay attention to the impact of a disease with growing burden, caused not only by ageing but by environmental exposures, such as pesticides. Manufacturers and regulatory authorities need to acknowledge the significant burden posted by Parkinson’s and take action to register medicines globally. New and innovative ways of raising awareness – including through documentary film – also offer opportunities to raise the profile of Parkinson’s and to share lived realities that support data, evidence and policy.
References
1. United Nations Department of Economic and Social Affairs. World Population Prospects 2024, Download Files 2024 [10/10/2024]. Available from: https://population.un.org/wpp/Download/Standard/Population/
2. Steinmetz JD, Seeher KM, Schiess N, Nichols E, Cao B, Servili C, et al. Global, regional, and national burden of disorders affecting the nervous system, 1990-2021: a systematic analysis for the Global Burden of Disease Study 2021. The Lancet Neurology. 2024;23(4):344-81. doi: 10.1016/S1474-4422(24)00038-3.
3. World Health Organization. Intersectoral Global Action Plan on epilepsy and other neurological disorders 2022-2031. Geneva: World Health Organization, 2023.
4. World Health Organization. Improving access to medicines for neurological disorders. Geneva: World Health Organization, 2024.
5. Mokaya J, Dotchin CL, Gray WK, Hooker J, Walker RW. The Accessibility of Parkinson’s Disease Medication in Kenya: Results of a National Survey. Movement Disorders Clinical Practice. 2016:376-81. doi: 10.1002/mdc3.12294.
6. Fothergill-Misbah N, Hooker J, Kwasa J, Walker R. Access to Medicines for Parkinson’s Disease in Kenya: A Qualitative Exploration. Movement Disorders Clinical Practice. 2024;11(11):1373-8. doi: https://doi.org/10.1002/mdc3.14192.
7. Fothergill-Misbah N. The lived experience of stigma and Parkinson’s disease in Kenya: a public health challenge. BMC Public Health. 2023;23(1):364. doi: 10.1186/s12889-023-15278-
About the author:
Dr. Natasha Fothergill-Misbah is a postdoctoral research associate in the Population Health Sciences Institute at Newcastle University, UK. Her research focuses on ageing and Parkinson’s disease in Africa and uses qualitative methods, including ethnography, to address the social, physical, and economic factors that influence health and access to health and social care across the life course. Natasha is passionate about advocacy, community engagement and co-production, including the use of creative arts in public health research. Natasha also consults for the World Health Organization on the development and implementation of global policy on brain health linked to the intersectoral global action plan on epilepsy and other neurological disorders.
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