1. What is the decision or change (e.g., clinical topic, practice guideline, system design, delivery of care) you are facing or struggling with where a summary of the evidence would be helpful?

Parkinson’s Disease is a relentlessly progressive neurogenerative disease that affects both movement and cognition. Patient must exert tremendous effort to complete basic activities of daily living and as the disease progresses, man people come to rely on caregivers. There are no treatments that cure, reverse or stop disease progression. That makes access to treatments that address symptoms all the more important. We are interested in data about the heterogeneity of Parkinson’s Disease and the value of different types and delivery methods of therapies. We would like to know the benefit of patient access to a full range of approved therapies for Parkinson’s Disease. More specifically, we would like to understand why patients respond differently and how that impacts differing needs for medication.

2. Why are you struggling with this issue?

Currently, anecdotal evidence from patients and clinicians is our best way to understand this issue. We hear that patients and clinicians struggle to find a therapy or combination of therapies that is compatible with a patient’s unique needs. However, there is little to no data to support these patient stories. When the one million Americans living with Parkinson’s struggle to afford or access their medications, a lack of data that affirms their experience harms their ability to make a case for medical necessity to payers.

3. What do you want to see changed? How will you know that your issue is improving or has been addressed?

We want to be able to use data to help patients make a case for the medical necessity of access to the full range of Parkinson’s Disease therapies. This report will allow for greater data and better access to therapies for patients. We will know that the issue is improving when we have a greater ability to analyze policies and formularies, which help us better understand how the landscape is changing.

4. When do you need the evidence report?

Friday, 11/01/2024

5. What will you do with the evidence report?

We will create educational materials explaining the importance of patient access to a full range of Parkinson’s Disease therapies. We will also use the data to inform our engagement with federal and state governments and agencies concerning access to care for Parkinson’s patients.

Optional Information About You

What is your role or perspective? Advocacy Coalition

If you are you making a suggestion on behalf of an organization, please state the name of the organization. Movement Disorders Policy Coalition

May we contact you if we have questions about your nomination? Yes