Your voice leads to better treatments and cures

Ted Thompson, J.D.

It’s an exciting time for health policy.

Patients, and broadly all Americans, are gaining more influence when it comes to how our federal agencies are conducting research and developing medications, devices, and treatments.

We’ve seen it with the groundbreaking 21st Century Cures Act, passed by the U.S. House of Representatives in July. And we’re seeing it in action right now with the Prescription Drug User Fee Act (PDUFA V), which, in part, is working to more systematically gather patients’ perspectives on their disease and its impact on daily life, the types of treatment benefit that matter most to patients, and adequacy of the available therapies.

People with Parkinson’s and their caregivers had a unique opportunity to participate in a Patient-Focused Drug Development meeting at the Food and Drug Administration (FDA) this fall as part of a mandate issued in PDUFA V that called for FDA to take a closer look at the patient communities of specific disease areas.  As a follow up, the Parkinson’s Action Network (PAN) and its Unified Partners created a community-wide survey to encourage people to share their disease experience with the FDA. Survey data will be collected through the end of October and reported directly to FDA. Through this process, we hope that people with Parkinson’s and their families will feel empowered to inform the FDA’s future work on Parkinson’s disease treatments and potentially a cure.

If Parkinson’s disease has impacted your family or the family of someone close to you, I highly encourage you to take the survey – and share it with others. It’s anonymous and will only take 15-20 minutes to complete. To date, we’re thrilled to see that more than 2,200 people have shared their information to provide the FDA with valuable data on the daily impact of Parkinson’s disease.

And let’s not forget about the upcoming process for PDUFA VI. PAN is participating in stakeholder meetings and engaging with pharmaceutical and patient communities to ensure that patient integration into the drug development process remains a top priority for FDA.

It is an exciting time for the future of health policy, accessibility, and delivery in this country, and it’s important for everyone to realize that as patients, caregivers, researchers, and clinicians – everyone has a role in these efforts.

Whether it’s taking the FDA survey, directly engaging with policy makers, or simply emailing your Members of Congress about health issues important to you, your voice can and will make a difference!

Learn more about PAN’s efforts at ParkinsonsAction.org.

Ted Thompson, JD, is the president and CEO of the Parkinson’s Action Network (PAN).

 

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