Inside The Senior Alliance: Alzheimer’s and Dementia Advocacy with Matt Phelan (Ep 1.33)

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In this episode, Emma Case, Planning and Advocacy Specialist at The Senior Alliance talks to Matt Phelan, Public Policy and Advocacy Manager at the Alzheimers Association of Michigan. They talk about the work that the Alzheimers Association of Michigan does, the differences between Alzheimer’s and Dementia, and the status of their efforts in getting Alzheimer’s and Dementia treatments approved through Medicare and Medicaid. They also discuss new treatments for Alzheimer’s and Dementia and how listeners can get involved in advocacy for those living with Alzheimer’s and Dementia.

www.thesenioralliance.org.

Produced by The Senior Alliance and Blazing Kiss Media

Transcription

Emma Case (00:00):
Welcome to Inside The Senior Alliance, a podcast exploring resources and issues in the field of aging. I’m Emma Case, Planning and Advocacy Specialist at the Senior Alliance, the Area Agency on Aging serving Western and Southern Wayne County. Joining me today is Matt Phelan, Public Policy and Advocacy Manager at the Alzheimer’s Association of Michigan. Matt, welcome to the podcast.

Matt Phelan (00:21):
Yeah, thank you Emma for having me today. I appreciate you taking the time to talk about Alzheimer’s because it’s such a critical issue, especially here in Michigan.

Emma Case (00:27):
Alzheimer’s Association of Michigan has a great wealth of information, support and free programs for Michigan residents living with Alzheimer’s, their families and their caregivers. In episode 17, we had Kayla from Alzheimer’s Association and Arnie, who is living with early onset dementia. We got to hear their story and information about Alzheimer’s Association. Matt, can you please remind us what is the mission of Alzheimer’s Association.

Matt Phelan (00:51):
Here at the Alzheimer’s Association our mission is to lead the way to end Alzheimer’s and all other dementia. And we do that by accelerating global research, driving risk reduction in early detection, and maximizing quality and support of care. And really our vision at the Alzheimer’s Association is a world without Alzheimer’s and all other dementia.

Emma Case (01:11):
Can you give an overview of what Alzheimer’s and dementia are?

Matt Phelan (01:16):
Absolutely. So dementia is a general term for loss of memory and other thinking abilities severe enough to interfere with daily life. Really, it’s an umbrella term to cover all dementia. Alzheimer’s disease is a degenerative brain disease and the most common form of dementia. Like I said, dementia is not a specific disease, it’s an overall term that describes a group of symptoms. There are all different types of dementia. There’s Alzheimer’s dementia, as I mentioned, there’s vascular dementia, Lewy body dementia, and several other different types of dementia out there. So at the Alzheimer’s Association, we work on Alzheimer’s disease and all other dementia.

Emma Case (01:54):
Matt, your area of focus is advocacy work at the Alzheimer’s Association of Michigan. One of your advocacy asks is to ensure access to Alzheimer’s treatment through Medicare and Medicaid. What is the current status of coverage through those two programs?

Matt Phelan (02:08):
Yeah, so it’s an exciting time, for Alzheimer’s research and treatments because we have the first ever FDA-approved treatments for Alzheimer’s. These are the first treatments that have been shown to slow some of the severity of Alzheimer’s and really give people more time. And so we’re really excited about these treatments. Unfortunately, the Centers for Medicare and Medicaid services, we call that CMS, has decided not to cover those. And so right now, those treatments are really restricted to only people on clinical trials or people willing to pay out of pocket. And the cost for new treatments, whether it be Alzheimer’s treatments or a new cancer treatment, usually range in the tens of thousands of dollars a year for those treatments. And so obviously the average person can’t afford that. So right now, the treatments for Alzheimer’s are really restricted in people’s access.

Matt Phelan (03:02):
Recently, CMS has come out and said that when full FDA approval of these treatments is granted, they’re going to open up that access more. That approval is actually expected at the end of next week, in the beginning of July. And so at that time, they’re going to open it up. However, they’ve said they’re going to open up access, but with a caveat that they’re going to require a registry. And we still see that as a potential obstacle for people to get it because it’s not guaranteed that every health clinic or doctor’s office will want to participate in that registry because it could include, you know, just more red tape that they would have to do. Pretty much all other FDA approved treatments are not mandated to have a registry. Alzheimer’s is being treated differently similarly to right now when Alzheimer’s is not covered pretty much for anybody. These are the first FDA approved treatments that have not been covered by the Centers for Medicare Medicaid services. And so what we’re really asking right now is that Alzheimer’s treatments are just treated as all other FDA approved treatments are, and that CMS centers for Medicare Medicaid Services covers them. So people that qualify for these treatments can have that discussion with their doctor and decide if this treatment is the right treatment for them to take.

Emma Case (04:18):
The National Board of Directors for Alzheimer’s Association has approved several position statements besides ensuring access to treatment. What are a couple of the most important topics that you advocate on?

Matt Phelan (04:29):
Yeah, so at the Alzheimer’s Association, we advocate pretty much at both the federal level and at the state level, and right now at the federal level, some of the other issues that we’re advocating on, number one is research. It is one of our number one priorities every year, which is increasing research funding at the National Institutes of Health. Just over a decade ago, we took on our advocacy efforts at the federal level in a more strategic and planned way with the National Alzheimer’s Project Act being passed. And that created a federal plan for Alzheimer’s and it kind of created a bigger focus on research funding through the National Institute of Health for Alzheimer’s. And what we’ve seen in the last decade since the adoption of that plan is a huge increase in research funding. At the time of its passage, we had less than half a billion dollars going towards research for Alzheimer’s and all other dementia.

Matt Phelan (05:23):
Today we’re sitting at over three and a half billion dollars in research, and we talked about the treatments earlier, and we believe this is a direct result of the increase in research that’s happening with this huge increase of research, we’re seeing more and more potential treatments. We’re seeing more and more positive results from clinical trials. We’re seeing the possibility of different testing and diagnosis that we could have here in the future for Alzheimer’s and dementia. So it’s a really exciting time for research around Alzheimer’s, and that is always one of our top priorities is to work on pushing research forward and increasing the funding for that research so that we can continue this great progress that we have had. Like just a couple other issues that we’re working on, you know, how people are diagnosed and how they actually deal with the medical issue of Alzheimer’s and dementia is another thing that we’re working on right now.

Matt Phelan (06:21):
We have legislation introduced in Congress that would create a model for those on Medicaid or Medicare that have an Alzheimer’s or dementia diagnosis to kind of streamline their care and create kind of a managed care system. Other diseases have kind of gone to this. These managed care systems have shown that they can kind of be a win-win for everyone. It kind of streamlines the care for the caregivers and the patients, but also save money for the government on the backend because if the managed care system can kind of line things up and reduce duplication of services where they’re not needed and kind of navigate and guide families through how they should deal with Alzheimer’s and what specialists they need to see and appointments, it’s been shown the save money and also obviously creates a better managed care for the family and the patient. So we have legislation asking the centers for Medicare and Medicaid services to adopt a model to test this out, to see if it will work. We know deep down that it will work, it’ll show savings of money, it’ll show better results for quality of care and hopefully in the future or something like that would be adopted by Medicaid and Medicare so that everybody that’s insured through those programs would have a better streamlined in higher quality of care.

Emma Case (07:40):
How can our listeners become involved and advocate in support of those living with Alzheimer’s disease and dementia?

Matt Phelan (07:45):
Yeah, so we’re always looking for new volunteers at the Alzheimer’s Association. You know, one of the ways that they can get involved is to contact us. You know, they can go to our website, alz.org and there’s ways to volunteer through there by signing up, we have a multitude of different things that we can do. Advocacy is just one of the things we do. We do large community events like our Walk to End Alzheimer’s that folks can get involved in. We have community support groups that people can get involved in. So we have a bunch of different ways in which community members can get involved with the Alzheimer’s Association and make a difference. Really what we look for in our advocates is people willing to use their voice and raise their voice up and get out and share their stories. We work very hard to pass our advocacy issues, but we don’t have the big money that others have. And so we really rely on our volunteers and them using their voice and sharing their stories to bring a face to this issue, to kind of move legislators to make changes that are positive for everybody in the country and in Michigan. So anybody interested in getting involved can visit our website at alz.org and sign up and we’ll be in touch on ways that they can help.

Emma Case (08:53):
Matt, thank you for joining me on this episode.

Matt Phelan (08:55):
Thank you, Emma for having me. It was my pleasure.

Emma Case (08:58):
If you have any questions about our services or programs The Senior Alliance offers, you can call us at 734-722-2830 or email us at info@thesenioralliance.org. Information about our agency or the programs and services we offer can be found on our website at www.thesenioralliance.org. On Facebook, we can be located by searching for the Senior Alliance. Finally, our Twitter handle is @AAA1C. I’m Emma Case. Thank you for listening to this episode of Inside the Senior Alliance.