CurePSP Survey Seeks to Document the True Financial Impact of PSP, CBD and MSA

The financial impact of living with progressive supranuclear palsy (PSP), corticobasal degeneration (CBD) and multiple system atrophy (MSA) is largely undocumented. While managing the symptoms is already a daily challenge, the added financial strain often takes a major toll on people diagnosed and their care partners.

The costs go far beyond doctor visits, scans and medications. Families often face hidden expenses like home modifications, mobility aids and specialized diets. There are also indirect costs, such as lost income when the person diagnosed or their care partner must cut back on work. These challenges can lead to added stress, isolation and financial uncertainty.

To better understand and address these challenges, CurePSP is conducting a research survey to evaluate the true financial impact of living with PSP, CBD and MSA. By gathering this data, we aim to advocate for greater awareness, policy support and resources to help alleviate the burden on affected families.

Why This Study Matters

This data will drive meaningful change. CurePSP will use the results to:

1. Advocate for better insurance coverage for essentials like physical and occupational therapy, mobility devices, dysphagia care and in-home support.
2. Brief policymakers on the true non-medical costs to inform disability, caregiver and Medicaid waiver policies.
3. Design and target CurePSP programs where they can deliver the greatest financial relief.
4. Provide evidence for industry and regulators (HEOR) to model the value of earlier diagnosis and new therapies.

In short: your responses translate directly into coverage, policy and support that families can feel.

The economic burden of Parkinson's disease (PD) in the United States is estimated at nearly $52 billion annually, with $25.5 billion in direct medical costs and $26.5 billion in non-medical costs — an average of $50,000 per person per year (Michael J. Fox Foundation and Parkinson's Foundation). Similarly, the total annual indirect cost of Alzheimer’s disease (AD) has been estimated at $832 billion, which includes $599 billion in unpaid caregiving costs and $233 billion in productivity losses. Average per-person annual costs range from $36,934 for mild cognitive impairment to $145,250 for severe Alzheimer’s disease (Fox et al., 2024).

That's why we're conducting this study now: to bring the same level of economic evidence to PSP, CBD and MSA so that coverage, policy and research decisions finally reflect our community's reality.

How to Participate

By participating in this study, you can help shape the coverage, policies and resources that families with PSP, CBD and MSA urgently need.

You can access the survey by clicking here.

• Please read all instructions carefully and confirm “Yes” on the survey to begin.
• You will then be directed to the informed consent form. If you agree, the survey will proceed to the questions.
• If you do not agree to the consent form, the survey will end.

Participation is completely voluntary, and your responses will be anonymous. The survey has been approved by an institutional review board (IRB) and should take approximately 40 minutes to complete. The survey will be collecting responses until November 30, 2025.

If you have any questions about this survey, please do not hesitate to contact Saira Mehra at mehra@curepsp.org

Thank you for your time and for helping us gather valuable information to better serve our community.

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