Parkinson’s disease impacts more than 11 million people worldwide, yet the system designed to manage their care is fragmented, inefficient, and fails to address the full scope of patient needs. Despite significant advancements in medicine, patients continue to face a disjointed care process that prioritizes profit over innovative solutions, leaving many without effective treatments or hope for a cure.
Here are the Issues We See in the Current System of Care
The current system of care for Parkinson’s patients seems to have evolved without a comprehensive or rational design to meet patient needs. Instead of providing holistic, patient-centered care, the system reflects fragmented priorities, inadequate resources, and a lack of alignment between patient outcomes and care delivery.
- Patients Have Inadequate Access to Neurologists:
Research has shown that seeing a neurologist can significantly improve outcomes for people with Parkinson’s, reducing mortality rates and the need for skilled nursing care. Yet, access to specialized care is alarmingly limited:
- 14% of Parkinson’s patients receive no care at all.
- 29% rely on primary care providers for Parkinson’s management.
Access disparities are particularly severe for women, people of color, and those living in rural areas, compounding inequities in diagnosis and treatment.
- Neurological Care Has a Narrow Focus:
Many patients describe their neurologists’ role as narrowly prescriptive, focused on monitoring symptom progression and adjusting medications. Patients often receive minimal face-to-face time — an average of 30 minutes twice a year — and encounter a lack of guidance on non-pharmaceutical interventions that could enhance their quality of life.
- There are Gaps in Holistic Care:
Parkinson’s is a multisystemic condition requiring an interdisciplinary approach. However, most patients do not receive critical supplementary therapies, including physical and occupational therapy, speech-language therapy, and mental health support. For example, although 53% of Medicare beneficiaries with Parkinson’s experience depression, only 2% receive care from a mental health professional.
- Current Medications Present Challenges
Medications for Parkinson’s provide symptom relief but come with significant limitations. Over time, the efficacy of these drugs wanes, and their side effects—including psychiatric issues, compulsive behaviors, and physical discomfort — can outweigh their benefits. Patients often face a cycle of escalating medication use, additional prescriptions to counteract side effects, and deteriorating mental and physical well-being.
- Hospitalization Poses Risks
Parkinson’s patients are particularly vulnerable during hospital stays due to widespread ignorance of the disease among medical staff. Common issues include:
- Lack of access to necessary medications
- Incorrect dosing schedules
- Substitution of inappropriate drugs, leading to severe discomfort and complications.
These failures erode patient trust in the healthcare system, leaving many to navigate their care alone.
- The Financial Burden of Holistic Care
Parkinson’s care is expensive, encompassing medication costs, co-pays, lost wages, and home modifications. Alternative therapies, which may offer relief from non-motor symptoms, are often paid out-of-pocket, creating disparities in who can access potentially beneficial interventions like exercise, mindfulness, and dietary adjustments.
- The System is Profit-Driven
If we “follow the money” through this system of care, it becomes clear that decisions about resource allocation are heavily influenced by financial incentives. Institutional leaders, pharmaceutical companies, and academic organizations often prioritize treatments and research avenues that yield the highest financial returns, rather than those that offer the greatest potential benefit to patients.
- Lack of Funding for Non-Monetizable Solutions
“Natural” remedies, lifestyle interventions, and other solutions that cannot be patented are consistently excluded from research funding. If the pharmaceutical companies that currently dominate the market don’t profit from these approaches, they are insufficiently studied or outright ignored. This bias harms patients who are left without validated, accessible alternatives and perpetuates a system where innovation is stifled.
- Misaligned Incentives Reinforce the Status Quo
The global market for Parkinson’s drugs is expected to grow from $4.61 billion in 2023 to $11.98 billion by 2031 — a staggering annual growth rate of 12.1%. Young-onset Parkinson’s cases (diagnosed under age 50) have doubled in the last decade, adding to the expanding pool of patients reliant on pharmaceutical interventions. With such high financial stakes, there is little incentive to find a cure for Parkinson’s disease. Instead, the focus remains on developing incremental treatments that ensure sustained revenue as the patient population grows.
This misalignment between financial rewards and patient needs perpetuates a system that prioritizes revenue over meaningful progress.
- Researchers Have Been Asking the Wrong Questions
Despite billions of dollars invested in Parkinson’s research over the past 25 years, including nearly $1 billion from the Michael J. Fox Foundation, the outcomes for patients remain disappointingly limited. These significant investments have yet to produce a cure or transformative breakthroughs because the research has focused on narrow, short-term goals rather than systemic, patient-centered approaches. By continuing to ask the wrong questions and focusing on pharmaceutical solutions that treat symptoms rather than address root causes, the research community has failed to deliver meaningful progress for patients.
Steps Towards a Solution
Resolve Parkinson’s is committed to reshaping the care system into one that is patient-centered, comprehensive, and equitable. Our vision for tranformation includes:
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Expanding Access to Neurologists and Specialists: Advocating for increased access to movement disorder specialists and ensuring all Parkinson’s patients receive expert care.
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Promoting Interdisciplinary Care: Developing standards for holistic care that integrate physical, occupational, and mental health therapies.
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Empowering Patients and Caregivers: Providing educational resources to help patients navigate their care options and advocate for their needs.
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Improving Hospital Practices: Working with healthcare systems to implement best practices for treating hospitalized Parkinson’s patients, including appropriate medication protocols.
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Reallocating Research Funding: We advocate for a portion of research funding from charitable sources to be designated for patient-identified solutions and alternative therapies that can’t be patented or monetized.
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Promoting Education and Collaboration: By fostering collaboration between researchers, clinicians, and patients, we can ensure that the system of care reflects the needs of those it serves. Educational programs for both patients and professionals will help bridge the gap between traditional care models and innovative approaches.
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Advocating Research into Non-Pharmaceutical Solutions: Encouraging investment in therapies and interventions that address the broader spectrum of Parkinson’s symptoms.
- Reducing Financial Barriers: Supporting policy changes that make supplemental therapies and holistic care more affordable and accessible to all patients.
A Call to Action
The current system of care for Parkinson’s disease is failing patients. It’s time to challenge the status quo and create a system of care that puts patients first. Together, we can build a future where Parkinson’s is not just managed, but ultimately defeated.
Join us in advocating for the systemic change Parkinson’s patients need and deserve.
