Editors Note: This piece was adapted from live remarks made by Congressman Dan Newhouse at the 2016 Yakima Town Hall hosted by the Alzheimer’s Association
Listening to experts and family members share their experiences with Alzheimer’s today has been the deepest dive that I’ve been able to participate in as far as Alzheimer’s and dementia are concerned. In the past, Alzheimer’s advocates have visited my office in Washington, D.C. for the annual Alzheimer’s Association Forum. Usually we spend 30 minutes or 15 minutes in those meetings, so to be able to spend over an hour listening and learning has been tremendously beneficial to me. In fact I almost feel like I’m less than adequate to talk about Alzheimer’s after the testimonies. And learning what people face when dealing with this disease. It was an experience that made me more determined than ever to be as strong of an advocate as possible for those people in Washington, DC. This goes to show that people are listening.
What you do as advocates is very impactful. Although this is Cougar Country, when Alzheimer’s advocates show up in your purple, when we see folks walking the halls of Congress in purple sashes, we know what they’re there for and what they’re advocating for.
I know it’s hard to get to Washington, DC – but it’s a little easier to get to Olympia. If you can join the Alzheimer’s Association for the Washington State Advocacy Day in Olympia you can influence your state representatives. When we hear from people that are experiencing the difficulties of caring for a family member, or what it is like to live with the disease, it is so much more impactful. Because those are real life stories. Those are the people we truly remember.
When I think of the things I’ve learned from Alzheimer’s advocates, three things come to mind.
The HOPE Act. It was very concerning to me to learn that almost half of patients are not told of their [Alzheimer’s] diagnosis and that information and assistance is not available to a lot of families because it’s not a Medicare-reimbursable expense. That is a shortcoming in our system, in my estimation, and I think a lot of people agree with that. Over 300 of my colleagues in the House have cosponsored the HOPE Act. That is three-quarters of the whole, obviously a majority. If we can get a vote on that it will pass with flying colors. So that’s a good step forward to make sure families get the information they need and help patients as well.
PCHETA, the Palliative Care and Hospice Education and Training Act, is certainly a very important step forward as well, to make sure our medical community gets the information they need. Professionals need the tools to feel comfortable visiting people who have been diagnosed with this disease. Professional needs the education in order to tell families their options and communicate clearly about what their loved one needs.
And the third thing – it always comes down to money. We have made good strides in increasing the amount of money available to the National Institutes of Health for research. Tremendous strides. Is it enough? I would say no. But by going from just over $300 million in annual funding, to taking steps in 2015 to fund $500 million and again in 2016 to over $900 million to almost one billion dollars, we’re taking good steps forward to improve the availability of resources to fund researchers for a cure and find ways to deal with symptoms. We need to continue this work and momentum to support research that will cure or treat this disease. For us as a nation to take center stage of finding a cure, doing the research necessary is tremendously valuable.
This is something that concerns everyone—nobody wants to have to experience Alzheimer’s in their life. A lot of the things are being done to address Alzheimer’s. We can do more.
We will do more as long as we can count on you, the advocates, to help partner with us. We need you to be strong voices for this cause. Don’t be reluctant, you have a lot of support, you really do, in Congress and around the country.