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Contributing to the Conversation of Healthcare: Rep. Eric Pettigrew on Access, Equity & Parkinson's

Tuesday June 16, 2020

In collaboration with the University of Washington and the Veterans' Affairs Hospital of Seattle, NW Parkinson's is working to bridge the gaps in access to speciality care among African-American communities impacted by Parkinson's. This Parkinson's Project also aims to garner a more accurate portrayal of who and how many live with Parkinson's in Washington state and, long-term, the Northwest region. 

One of the Project's earliest and whole-hearted proponents is Washington State Representative Eric Pettigrew of the 37th district. 

In 2019, Representative Pettigrew brought the amazing gaps in data on people living with Parkinson's disease, as well as in access to care, to the Washington state legislature's attention. Through his advocacy and partnership with NW Parkinson's, Representative Pettigrew is making it possible for people impacted by Parkinson's to learn more about their care options, including the diagnosis process, speciality care, and supportive services through the work of NW Parkinson's Community Engagement Manager, Jordan Whitley. You can read more about the Parkinson's Project in detail here.

Below is a conversation between Representative Pettigrew and Bette Jane Camp, NW Parkinson's Programs & Communications Coordinator. During fall of 2019, the Project received funding and the essential go-ahead: soon after, Representative Pettigrew and Bette Jane met to discuss the Parkinson's Project, the intermingling roles of health, agency, community, and care, in the last summer light of the Pacific Tower in Seattle, WA. 

 

BJC: Did you know of Parkinson's disease, before the Parkinson's Project?

Rep. EP: Not really, not in great detail—I knew a number of folks who were suffering from it, or have—a couple close friends of mine. And actually after our meeting some constituents [came forward] who had some family members with Parkinson's that I happened to know.

 

So mostly through personal connections?

Some, but it was really Melissa [Tribelhorn, Executive Director] coming down and telling me the story of the challenges not only of the disease but also the things that people need while they live with it.

 

In your own words, can you share with us and our community what this study and pilot program are going to look like?

I'm hoping that it's going to be an opportunity to broaden the understanding of the impact and the depth and breadth of Parkinson's and how it's a disease that affects all folks, all ages, generations, ethnicities. Given the limited resources, data collection has been a challenge. Especially when you're in [for] other areas of care. It's hard to actually get the dollars to do the research that's necessary. So this helps broaden not only the information but also helps articulate the story and the challenges for people impacted by Parkinson's.

 

The story is a big part of this. I'm curious, from the political side of things, what does quality healthcare look like to you?

Quality healthcare is something that everybody is engaged in. When I say everybody, I mean historically healthcare has been pretty much a one directional relationship. It's been doc to patient, “You go forth and do whatever I tell you to do”.

And one of the things I've realized just dealing with my own family and personal healthcare is that it's more of a partnership, and it takes everybody to be involved—the treatment but also the diagnosis—in understanding what that true diagnosis is. This can be as simple as taking in some unscientific reports by family members.

People know their family members really well, and when someone's not able to do something they've been doing for many years, eliminating accidents, that's very important to include in medical assessment and care. I see it more as a partnership: healthcare is something that we all need to be engaged in and understanding, and that can be a little tricky for the individual; you go on the internet and think, Oh my God, I might have this worst-case scenario, but that's why you need all levels of care, technicians, diagnosticians. So that you can better target specific needs and care.

 

To me, that's a helpfully nuanced way of putting it, especially having been to countless doctors' offices with my dad. That reciprocity is very meaningful when you experience it—because it can be few and far between—but that's due to change thanks in part to people, leaders and advocates, like you.

Well thank you. And I'm hoping that, in addition to data, this study will feed into that message to get folks engaged in their own healthcare, as well as the care of their family members. [I hope they] can feel they have as much of a say not only in treatment, but sometimes in diagnosis—that they can contribute to the conversation. I think a lot of people are intimidated by the process. You know, you go into the doctor's office and say, “I think X isn't working because Y”, and you're usually surprised with how big of an impact your input has on the overall treatment and plan for the patient.

 

Did you expect healthcare access to be on your professional/personal agenda as a state representative?

Yeah, my other life is insurance. I've been in insurance for almost 25 years, and it's always going to be an issue. On a personal level and a community level. I meet with constituents all the time that are dealing with health issues, whether a treatment plan, or payments, or access to care. Or even Parkinson's. Having that data is vital to be able to ask: what is going on in communities to color? As well as [to create] access to treatment plans that communities are engaged in. There are some other things the communities could get social support for [through supportive services], like treatment and management, which hopefully broadens the impact.

 

I was just about to ask: what are your goals for your district through this work?

I hope, for my district, for folks that are engaged in the Parkinson's discussion, or have family members in need of treatment or way of managing, that this brings them to the resources out there to find care as well as give them a broader understanding of where those opportunities are. I also hope it helps to educate the healthcare community as a whole—not only as it relates to communities of color, but also as it relates to Parkinson's as a specific experience: how cost fits in, the planning, understanding what things are out there to help your dad, and you, as you help him and the community and the family. That's extremely important. And it also helps sends a message over to the legislative body so we can have a better understanding of the supports our people need.

 

I have one more question. What's your go-to, favorite breakfast place in your district?

Oh! My go-to breakfast place is Tommy's. It's on Rainier; it's been there forever. I think all the Boeing engineers and pilots used to go in there. And they still do! They're still there. I go in there and hear all this plane talk, a whole other language, all these war stories, building planes. And the food—great in the sense that it's comfort food. Like you go over to your aunt's house and she just says, “What do you want?” and she gives you whatever she wants to. Yep, Tommy's. That's my spot.

 

If you would like to participate in, advocate for, or learn more about the Parkinson's Project, please reach out to Jordan Whitley at:

Jordan@NWPF.org | 206.946.6520

Bette Jane Camp
NWPF Blogger

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