Last week I met some amazing people, listened to presentations that really had my attention, and learned first-hand about advocating to legislative representatives. I was impressed by how well organized this event was; even more so when you consider how few staff members this organization has. This was my first Parkinson’s Action Network (PAN) forum and I was there to gain a different perspective on patient advocacy for people living with Parkinson’s disease. Previous Parkinson’s conferences I’ve attended were local, and focused on educating people about Parkinson’s as well as some of the medical treatments and local services available to them. This conference was different in that it’s national, but also in that the discussion on medical treatments and technologies went beyond educating us on the basics. We learned of some of the difficulties that are experienced making them available to people living with Parkinson’s and we were encouraged to help speed up the process.
At the Forum
On the first day, after a warm-up by Charlie Cook of the Cook Political Report on the political climate here in Washington, D.C. and his insight on the candidates for the 2016 presidential election, we learned about new technologies:
- Fox Insight (www.FoxInsight.org), an online study to gather data about patient experiences, both medical and daily living – from the Michael J Fox Foundation
- developing technologies to improve patient / doctor communications – from Great Lakes Neurotechnologies
- DaTscan, a new imaging tool for earlier diagnosis – from GE Healthcare
- issues patients deal with when trying to access new and innovative treatments
I was impressed by how the Michael J Fox Foundation (Fox Insight) study was open to everyone, not just people living with PD, and how it covers life with Parkinson’s not just medical data. On the other hand, I was so very frustrated at the difficulties patients experience in gaining access to necessary medications, particularly the newer ones. Too often patients have to advocate for themselves by being forced to appeal when they are refused access to medications by their health insurance company, or by finding programs and grants to help pay for them. While we can do a lot to stay healthy through our lifestyle choices, I believe we have the right to appropriate medical care when we need it.
On the second day, the presentations were geared toward preparing us for our day on Capitol Hill when we would ask our legislators for their support. We learned why we were asking for members of the House and Senate to:
- Co-sponsor the Advancing Research for Neurological Disease Act of 2015 (H.R. 292, S. 849)
Do you know how many people have Parkinson’s? The estimate is between half a million and a million and a half. That’s a pretty big difference, and it’s quite possible that there may be more. This Act will enable the Centers for Disease Control (CDC) to collect the data (much of it already exists) and evaluate it. It can then be used to provide research, treatment, programs and services. Although we were advocating for assistance on behalf of the Parkinson’s community, this act covers other neurological disease such as Alzheimer’s and Multiple Sclerosis. Advocates from the Alzheimer’s Association were also there the same day we were at the Capitol.
- Reinstate or provide additional funding for:
◦ the Department of Defense Parkinson’s research (NETPR) program to identify how Parkinson’s develops and research how to diagnose, prevent and treat it.
◦ NIH to facilitate research into Parkinson’s treatments and cures
◦ FDA to speed-up the process of approving prescription drugs and make them available to patients sooner rather than later.
- Join the Congressional Caucus on Parkinson’s disease
We worked in teams with others from our state, and appointments with our House and Senate representatives were arranged for us by PAN staff. In our folders we had information about the representatives, the staff person we would be meeting with and information on the various requests to help us speak knowledgably about them. Our Virginia team was fortunate to include veteran PAN advocates, Karl and Angela Robb, so they could guide us newbies in the planning and process. We decided that each of us would speak to a particular request based on our experiences and reasons for being there. I felt most comfortable speaking about H.R. 292 because I feel that if we know where people living with Parkinson’s are, we could reach out to them and connect them with relevant programs and services.
On the Hill
On the third day, we were transported to Capitol Hill from our D.C. hotel. The timetable for the buses was coordinated with our appointment schedules. It was a long day, but productive, and we met with staff from the offices of our two U.S Senators as well as three U.S. House Representatives. We began each meeting by explaining that we were speaking for our friends living with Parkinson’s who weren’t able to be there that day. Then each of the six people on our team introduced ourselves, spoke about our particular issue and made our request for support. In response, we were advised about where our Representative stood on the matter, questions were asked and sometimes more information was requested. We took notes so that PAN staff could follow-up. We also exchanged business cards so we could follow-up individually by email, and where possible, had our photo taken with the person we spoke to so we could post it on social media. The power of images!
My thanks go out to the staff at PAN (in particular Hayley and Jennifer!) for organizing this informative and inspiring event, and congratulations on a job well done!
Patients are people, too!
I’m curious to see what happens as a result of our advocacy. I’ve never done this sort of thing before – met with or written to a politician to make a request – and I was surprised at how easy it was. I’ve been assured that the more they hear from us, the better chance we have of getting and keeping our representatives’ attention so they will take action. If you’d like to give it a try, you can find out more about the Parkinson’s Action Network and the issues they are working on through their website, http://parkinsonsaction.org.
I realize that not everyone shares my interest in Parkinson’s, but after reading this article about what we learned and did, I hope that you’ll be inspired to find out how you can take action for a cause that is important to you. For instance, if your interest is in Alzheimer’s disease, you can find information about their advocacy forum here: http://www.alz.org/forum/overview.asp.
Speak up! The more our politicians hear from us, the better chance we have of being heard. Excuse me . . . I have some follow-up letters to write!