Meet Our Los Angeles Community: An Update from the Parkinson’s Advocacy Forum

Sep 30, 2019

Last month PCLA President Patrick LoSasso and Board Member Mark Siegel traveled to Washington, DC, for the 2019 Parkinson’s Advocacy Forum. They and 150 other advocates from across the country in educated Congressional members on policy issues impacting the PD community. We talked with Patrick about the Forum and some current legislative priorities.

Patrick, thank you for sharing with us your experience at the Parkinson’s Advocacy Forum. What can you tell us about your time in DC? 

The Forum was two days – the first day was an orientation and our advocacy training. We heard from Members of Congress and staffers on how best to approach our meetings, and we learned more about the legislative issues for which we would be advocating. The second day we were divided into teams and had meetings on the Hill.

What was your Hill Day experience like? 

Mark and I were teamed up with another advocate with Parkinson’s from the Los Angeles area. It was a busy day. We had meetings in the offices of both California U.S. Senators – Dianne Feinstein and Kamala Harris – and three Representatives serving districts in Los Angeles: Karen Bass (37th district), Jimmy Gomez (34th district), and Adam Schiff (28th district).

At every sit-down, someone we met with had a connection to Parkinson’s. Adam Schiff has a personal connection to PD and is also a member of the Congressional Caucus on Parkinson’s disease. We had a great meeting with him – though it was a busy voting day so he had to pop out of the office a couple times to go cast votes! 

Can you tell us more about the current legislative priorities for Parkinson’s advocates?

In our meetings we shared the tremendous economic burden of Parkinson’s and the impact it has on a family’s finances. We also talked about expanding access to mental health care, protecting access to medication, and increasing federal funding for Parkinson’s research.

The cost of Parkinson’s on the economy is $52 billion a year. The federal government spends nearly $25 billion each year in caring for people with PD, but invests less than $200 million in Parkinson’s research. We shared these eye-opening figures with lawmakers to encourage them to invest more in research. 

At least half of the people living with PD in the U.S. may experience depression, anxiety, or other mental health issues. Mental health counseling services are not covered by Medicare, which means that 90% of Parkinson’s patients have no coverage for these services. The Mental Health Access Improvement Act of 2019 provides coverage for licensed mental health counselor services under Medicare. [Take action: Tell Congress to Expand Access to Mental Health Care for People with Parkinson’s].

We also shared in our meetings that those who rely on Medicare Part D for prescription drug coverage face an unnecessary financial burden. Non-Medicare plans have out-of-pocket maximums, but that’s not the case for Medicare Part D, which means there is no limit to what one may have to spend to obtain prescription drugs throughout the year. So we asked Congress to support an out-of-pocket cap for Medicare Part D. [Take action: Act Now: Your Senator Is Deciding on Medicare Prescription Drug Costs]

The Fox Foundation has gathered information on a number of other current Federal advocacy priorities on their website, including banning paraquat [an herbicide with links to Parkinson’s].

They make it really easy for all of us to take action from home by contacting our legislators on these important issues.

Did you discuss any priorities at the state level?

Yes, we talked about the California Parkinson’s Disease Registry (CPDR), which is at risk of being shut down. 

The Registry was established at the CA Department of Public Health, and its funding needs to be renewed. The state Assembly and Senate have unanimously passed legislation [A.B. 715] to extend the Registry until January 1, 2021. The bill awaits Governor Gavin Newsom’s signature but the California Medical Association is pressuring him to veto the bill. We urged Members of Congress to press the Governor to sign to bill extending the Registry.

The Registry collects data on incidences of Parkinson’s and could be a critical tool for researchers seeking new treatments and a cure — shutting it down and losing that data would be a huge setback for the PD community. [Take action: Save California’s Parkinson’s Registry]

During our visits legislators were impressed to learn that our team member and PCLA board member Mark Siegel was instrumental in the creation of the Registry. Since his diagnosis, Mark has been a powerful advocate for finding a cure and improving the lives for those living with Parkinson’s and their families. The establishment of the CA Parkinson’s Registry is largely due to his initiative.

What is the best way for each of us to advocate on behalf of the Parkinson’s community?

Our training stressed that one can effect policy change in three primary ways: writing letters to your Representatives; calling your Representatives; and visiting the office of your Representatives, like we did during the Forum. 

In-person visits are by far the strongest ways to effect change, because you are making a real personal connection. Typically in these meetings you are sitting down with a Legislative Aide or another staff member. Part of their job is to learn from the constituents what issues are the most important to them, and then do the research needed on the legislation that can make those changes happen. I can tell you that I really felt like we made a difference that day.

I’d like to suggest a fourth way to advocate effectively: demonstrate.

What was your main take-away from your experience at the Forum?

When you look at the amount that the government is investing in Parkinson’s research – $200 million a year – versus how much the government spends each year caring for people with PD – $25 BILLION a year – those numbers are shocking. 

I really believe we need the entire community to demand the government invest more in Parkinson’s research. We need to be LOUD about this – we need to be a much squeakier wheel in order to make this happen.

Patrick, thank you for talking with us, and thank you and Mark both for traveling to DC to advocate on behalf of the Parkinson’s community across the United States!


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