Parkinson’s disease is without borders. Just as the impact of Parkinson’s is widespread, so too is the Parkinson’s community who works tirelessly to share knowledge and support one another.
In April 2021, the Brain Health Unit at the World Health Organization (WHO) invited Parkinson Canada to participate in a workshop of organizations and advocates from around the world to discuss the global state of Parkinson’s.
From the workshop, a global-scale understanding emerged about the state of Parkinson’s and led to workable avenues for action, with an emphasis on low-and-middle-income countries (LMIC).
There is still much to learn about Parkinson’s, but what this community does know, is in 2019, there were over 8.5 million people living with Parkinson’s around the world and the global rates of the disease continue to rise at an alarming speed.
There are a number of factors contributing to these growing numbers, including:
- Aging populations
- Longer life expectancies
- Improved detection, education, and awareness around Parkinson’s in some parts of the world
- Increased exposure to environmental factors linked to Parkinson’s (i.e., pollution resulting from industrial growth)
And while rates of disability and death due to Parkinson’s are rising faster than for any other neurological disease, we are better at managing it, researching it, and caring for those with it when we collaborate and consult as a global unit.
The following are a few of the learnings and action items published in the official WHO technical brief on Parkinson’s disease. You can read the full brief on the World Health Organization’s website.
Global policy, advocacy, and awareness
Improving awareness among people with Parkinson’s, their families and societies at large can change public perceptions that lead to stigmatization and discrimination.
Engaging local networks
Building up local support for people living with Parkinson’s has a significant impact on quality of life. Parkinson Canada shared the enduring feedback we receive about the life-changing impact that local support groups and community-level initiatives have on Canadians living with Parkinson’s.
Engaging international advocacy efforts
Leveraging other resources like the WHO global action plan on epilepsy and other neurological disorders can engage advocacy efforts for Parkinson’s and helps many more millions of people along the way. It brings Parkinson’s into conversations outside of the Parkinson’s community and genuinely helps to grow awareness among those not yet acquainted with it.
All neurological diseases would benefit from improved policy and greater awareness. Leveraging other resources like the WHO global action plan on epilepsy and other neurological disorders is a way to engage advocacy efforts for all neurological disorders including Parkinson’s and helps many more millions of people along the way.
Prevention and risk reduction
To combat the growing number of cases linked to the use of pesticides and chemicals, risk-reducing strategies around pesticides, industrial chemicals, and air pollution are needed.
These can include government and workplace regulations, public education about healthy living lifestyles and proper use of personal protective equipment and investigation into safer alternatives where possible.
Access to diagnosis, treatment, and care
Primary care, the entry point to health care in most communities, is the logical setting for diagnosing and treating Parkinson’s in low-and-middle-income countries where access to specialized services are lacking. Since Parkinson’s is diagnosed by clinical evaluation and physical tests, bringing training to primary care providers would help to circumvent the issues around specialist service availability.
Telemedicine comes as a recommendation already seeing success in low-and-middle-income countries and high-income countries alike. It can help address diagnosis in more complex cases requiring a specialist opinion, and in the treatment and care of Parkinson’s. Telemedicine is a remedy for geographic barriers to accessing care – a widespread hurdle faced by many people living with Parkinson’s, and something Canadians in rural areas are all too familiar with.
Other recommendations for improving treatment and care
Levodopa, the gold standard treatment for Parkinson’s, is only available in 37 of 110 countries surveyed by the WHO. And even countries with Levodopa have barriers to accessing this staple medication, mainly affordability. Improving access to treatment could look like:
- Advocating for Levodopa and medications that treat other motor and non-motor symptoms to be added to the WHO Essential Medicines List, national essential medicine lists, and other healthcare plans Here in Canada we have our own issues with equitable medication access as drug coverage differs from province to province.
- Ensuring good health financing and social protection to prevent catastrophic out-of-pocket payments or a full-stop inability to treat one’s Parkinson’s.
Improved access to ongoing care involves:
- Building up the workforce of primary healthcare, social workers, rehabilitation and palliative care workers
- Developing career tracks to encourage more medical professionals to choose neurology as their specialty by strengthening postgraduate training, and working in partnership with medical societies to raise awareness of Parkinson’s.
To increase awareness of the impact Parkinson’s has on care partners, it sits as its own action item. It is important to help care partners find confidence in their role and the ability to care for themselves simultaneously to avoid burnout. Programs that promote care partner well-being and enhance knowledge and caregiving skills throughout disease progression in those they care for may prove helpful in establishing that confidence.
Research plays a key role in generating knowledge and evidence which leads to policy improvement and enhanced planning and programming for Parkinson’s. Some recommendations for furthering – and bettering – Parkinson’s research are:
- Improve data collection on prevalence, demographics, and reporting from low-and-middle-income countries to facilitate policy changes and the allocation of research and health care resources.
- Develop better regulatory frameworks to allow more efficient and secure sharing of data between sectors and across borders.
- Promote diversity, equity, and inclusion in all areas of Parkinson’s research, and include people living with Parkinson’s in the research design to ensure research resources are being directed towards initiatives that improve quality of life while the search for the cure continues.
You are at the center of everything we do
You never know how far sharing your experiences will ripple through others’ lives. This time, your experiences have rippled across oceans.
Canadians impacted by Parkinson’s have a unique and valuable perspective. It’s because you allow us to come along this journey with you that we are able to bring value to initiatives like this global collaboration.
We look forward to seeing this action plan embraced by the global Parkinson’s community and are standing by to help support the rollout however we can. Follow us on Facebook, Twitter, or LinkedIn for updates on this initiative and others to come.