“The drug cannot be found. We called pharmacies, they said there’s none. We went around the capital, there was no chemist that sells it. In a day, I did nothing from morning to evening, I just looked for Parkinson’s medication.”
That is the experience of one carer of a person with Parkinson’s disease in Kenya. And their case is far from an isolated one. Around the world, access to treatment and medication for disabling disorders and conditions of the nervous system, like Parkinson’s disease, is uneven and often absent. This treatment gap – the disparity between the number of people with one of these diseases and the number getting treatment – is widening, exceeding 75% in some lower-income countries, according to the World Health Organization (WHO).
And this is an increasingly pressing problem, as the prevalence and impact of neurological disorders globally is growing dramatically. These conditions – which also include Alzheimer’s, epilepsy, multiple sclerosis and dementia – are the leading cause of disability globally, says the WHO.
There has been an 85% increase in the number of years lived with disability between 1990 and 2021 as a result of these disorders. They are also the leading cause of disability-adjusted life years and years of life lost globally.
Why is there a treatment gap?
For many neurological conditions, effective medicines exist to prevent, treat and/or manage symptoms. These can significantly improve the quality of life of people with these disorders – and therefore the treatment gap increases the risk of disability and premature death. It also has an impact on quality of life, as well as social and economic consequences.
There are multiple interlinked causes for this uneven access to treatment. For example, there may be a lack of awareness or misconceptions and stigma associated with a disease, which may in turn prevent people from seeking help. Healthcare systems may have limited capacity and resources to recognize, diagnose and treat conditions. And access to the medicines themselves is a significant contributory factor, which can be shaped by market authorizations and cost, among other things.
Health inequities compound the problem, with people living in rural or poor communities, as well as other vulnerable groups, often disproportionately affected.
How do we close the treatment gap?
There is a high amount of stigma associated with neurological disorders, which can result in discrimination and reduce access to education and work for people with these conditions. This stigma therefore creates health, social and financial barriers which can prevent people from seeking medical help and diagnosis.
We need to raise awareness and understanding of these disorders at a community level, says the WHO’s recent report, Improving access to medicines for neurological disorders. This will help create more inclusive communities where people feel comfortable and confident in accessing health services.
The report also recommends closer alignment by countries with the WHO’s list of essential medicines (EML), which is unevenly followed throughout the world. Medicines for Parkinson’s and epilepsy are not widely included in EMLs by countries in Africa, for example, nor are specific formulations of some drugs such as anti-seizure medicines for children. This can make it less likely they will be prioritized for procurement and reimbursement.
Similarly, the under-registration of essential medicines for neurological disorders by regulatory authorities is a major barrier to access, as this means they cannot be sold or distributed. The WHO is helping some countries streamline their registration processes as improved registration is vital to boosting procurement and capacity.
For many people, even if the drugs are available, they are not affordable. Healthcare for neurological conditions is poorly financed and medicines are often excluded from universal health coverage. This means people have to pay out of their own pocket – if they can. A month’s supply of medicine for several conditions including Parkinson’s and epilepsy have been found in some cases to cost more than the equivalent of a month’s wages for the lowest paid government worker.
To remedy this, the coverage of publicly funded medicines needs to be improved, and these medicines also need to be made available at a price that is affordable for both patients and healthcare systems.
Overseeing and administering all of this treatment needs to be adequately trained healthcare professionals. The absence of people able to diagnose, manage and treat neurological conditions is particularly acute in lower-income countries. The WHO recommends that alongside education and awareness training at primary healthcare level, there needs to be specialized training at tertiary level, particularly to assist in the holistic management of these conditions.
The role of data
Feeding into all of these barriers is a lack of data which affects both our understanding and delivery of care, as well as access to medicines themselves.
For example, we have limited understanding of the burden these diseases present, particularly in lower-income countries. This is because health records can be unreliable and also because we have limited data on the long-term health, social and economic benefits of investing in neurological disorders.
The result of this is that it can be hard to prioritize what needs to be done.
Separately, supply chains are also affected by a lack of data on availability, pricing, forecasting and distribution.
Closing this knowledge gap caused by poor data will help us to make better evidence-based decisions, and better allocate resources according to the needs of the population.
Partnerships are key
Collaboration will be key to unlocking many of these issues, helping to spread knowledge and best practices between stakeholders. Together we can help better prioritize neurological disorders and improve our understanding.
It was in this vein the World Economic Forum established its Centre for Health and Healthcare, bringing together business and technology partners to identify and scale solutions for more equitable healthcare systems.
This article previously appeared in the World Economic Forum.