One of the most critical obstacles in the fight against Parkinson’s disease is the lack of access to quality Parkinson’s-specific care in the U.S. Despite advancements in research and treatment, many patients continue to face significant disparities in receiving the care they need, contributing to preventable suffering and missed opportunities for improved quality of life.
Limited Access to Neurological Expertise
Neurologists play a vital role in managing Parkinson’s disease, yet patients often experience limited and prescriptive interactions. In many cases:
- Neurology appointments last only 30 minutes, twice a year.
- Patients report that neurologists often focus on monitoring decline and adjusting prescriptions, rather than exploring comprehensive care strategies.
- Neurologists frequently lack resources to offer effective, holistic treatments.
Why This Matters
Data shows that people newly diagnosed with Parkinson’s who see a neurologist are:
- 20% less likely to die within six years.
- 20% less likely to require placement in a nursing home.
Furthermore, referrals to allied specialists such as physical therapists or dieticians often lead to frustration, as many lack specific training in Parkinson’s care. Non-pharmaceutical interventions — like exercise, vitamin B1, and light therapy — are often overlooked due to insufficient research or liability concerns, leaving patients to navigate alternative treatments alone.
The Facts: Disparities in Access to Care
Research underscores alarming disparities in Parkinson’s care access:
- 14% of patients receive no care at all.
- 29% rely on primary care providers who may lack specialized knowledge.
- Only 9% receive care from movement disorder specialists, the gold standard of Parkinson’s care.
- Care gaps are especially stark for women, people of color, and those in rural areas, who face heightened challenges in receiving timely diagnoses and appropriate treatment.
- Mental health support is another glaring gap, with 53% of Medicare beneficiaries with Parkinson’s suffering from depression, but only 2% receiving mental health treatment.
Data shows that people newly diagnosed with Parkinson's who see a neurologist are 20% less likely to die within six years and 20% less likely to require placement in a nursing home.
The Importance of a Multidiscipinary Approach to Care
Effective treatment for Parkinson’s requires a team-based approach. A Parkinson’s Foundation Center of Excellence exemplifies this standard, bringing together:
- Neurologists and movement disorder specialists with advanced training
- Physical, occupational, and speech therapists
- Mental health professionals and nutritionists.
These centers offer up-to-date medications, therapies, and access to clinical trials. However, with only 34 Centers of Excellence in the U.S. for over 1 million patients and 48 globally for 11 million patients, access remains critically limited.
Steps Towards a Solution
Resolve Parkinson’s is dedicated to bridging these gaps. By advocating for improved access to specialized care and supporting the establishment of more Centers of Excellence, we aim to ensure every person living with Parkinson’s can receive the comprehensive, multidisciplinary care they deserve.
