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Connecting ALS is a weekly podcast produced by The ALS Association in partnership with CitizenRacecar. We aim to discuss research and technology developments, highlight advocacy efforts, and share the personal stories woven through the community.
Rich Brennan:
And so all that combined, we're trying to ensure that people living with ALS have opportunities and can speak to the federal government and ensure that they receive the services and the therapies that they deserve.
Jeremy Holden:
Hello, everyone, and welcome to Connecting ALS. I am your host, Jeremy Holden. In May, the Center for Medicare and Medicaid Services is scheduled to complete the process of making seat elevation and power wheelchairs covered by Medicare policies, a big win for the ALS community, and a step toward making ALS livable for everyone everywhere. Joining me this week to talk about this regulatory change is Rich Brennan, vice president of Federal Affairs at the ALS Association. Rich, thanks for joining us here on Connecting ALS.
Rich Brennan:
Certainly, Jeremy. Thank you for having me.
Jeremy Holden:
Yeah, it's an important topic, and I know one you've been working very hard at. This change to Medicare to provide coverage for seat elevation, Rich, this has been a long time coming.
Rich Brennan:
This has been a long time coming. It takes a lot to get to the point where CMS is willing to even entertain a major change in coverage for Medicare. So there's a lot of evidence development and advocacy that goes in behind these efforts to have things, like seat elevation covered, for Medicare beneficiaries.
Jeremy Holden:
A lot of data goes behind this, but also a lot of people that are part of this, Rich. We know that a lack of coverage has had a real impact on the lives of people living with ALS. And we're going to hear a little bit later from Katie Adams, a woman in Kentucky who has been fighting with Medicare for access to a power wheelchair, and who has dealt with questions from the healthcare industry as to whether her chair is medically necessary. Katie says that question is so easy that a kindergartner can answer it.
Rich Brennan:
Certainly. I mean, that's one of the main arguments for extending this coverage to the power wheelchair systems, the seat elevation systems in particular, is because they're completely medically necessary. People living with ALS need to have and maintain their independence, and this is one of the primary ways for them to be able to maintain independence, and also provides them a level of safety to be able to transfer safely from their wheelchairs onto to other places. So it also provides for support for the caregivers as well.
Jeremy Holden:
I mentioned Katie Adams. She's just one of the voices that we've heard from the community. I know that the public policy team has created a great story share opportunity for folks who are engaged in the fight. We can share a link to that in the show notes. But Rich, what are we hearing from the community about this issue of access to power wheelchairs and coverage for seat elevation?
Rich Brennan:
And certainly, Jeremy, we've had several opportunities to comment to CMS in September, then again in March. And part of those advocacy efforts included comments from people from all over the country. In fact, people from 47 states submitted comments to us to pass on as CMS. I can just read one. There's one from Sheila McKay Devlin who said, "For years, my sister and I had to pick my father up from his wheelchair and put him into bed, onto the toilet, into the car, or any other location other than his wheelchair." They said, any device that could have made this task easier is mandatory. Any device that could assist a patient suffering from ALS or assist their care caregiver in providing optimal care should be mandatory. The disease is brutal enough. Then to have to fight for what is needed as an outrage. Put yourself in someone else's shoes just for a moment, and you won't think twice about voting for this simple request." Now, that's the type of comments that we've received from all over the country, from families and caregivers and people living with ALS, demanding the fact that this would be a benefit to them and that CMS should go forth with their coverage of seat elevation systems.
Jeremy Holden:
Powerful stories and something that we've heard from lawmakers, from regulatory officials that can be powerful and very moving in terms of making some of these hard decisions that they grapple with. Now, Rich, this change that we're talking about over at CMS, it only affects people who are covered by Medicare. But well, two questions I guess to this one. Does the change apply to all parts of Medicare? And what impact could this decision potentially have outside of CMS maybe in private insurance?
Rich Brennan:
So what this does is this sets a standard. Medicare is sort of the gold standard for care coverage across the country. And once Medicare does something, it leads to changes in other forms of insurance. So that's very helpful to have CMS determine this type of coverage to be beneficial to the disability community. What I would say is that there are other decisions and other policies that are also in parallel to this policy, so things like trying to have parallel benefits between Medicare and Medicare Advantage plans is also something that CMS is trying to address. And we would expect that, because this is covered in Medicare, then the Medicare Advantage plans will have to follow suit, because they're supposed to be equivalency between the two.
Jeremy Holden:
Rich, the seat elevation at CMS and access to DME is just one part of the work that you're spearheading, in terms of regulatory advocacy. What are some other things that you've been focused on that might be of interest to folks listening in at home?
Rich Brennan:
Certainly, part of the roles and responsibilities that I have is connecting with all of our federal partners, so anybody at the FDA or the National Institutes of Health or a Center for Disease Control, and even the White House, that is concerned about ALS and wants to promote ways to provide for better funding for durable medical equipment or better care services or more, I guess, funding for therapies. And so all that combined, we're trying to ensure that people living with ALS have opportunities and can speak to the federal government and ensure that they receive the services and the therapies that they deserve.
Jeremy Holden:
Important work, Rich, and thanks for all that you do to try and move some of those policies forward. And appreciate you spending some time with us this week.
Rich Brennan:
Certainly, Jeremy, thank you for having me.
Jeremy Holden:
The fight to make sure Medicare is working for people living with ALS, no matter where they live, doesn't just happen in Washington. Our next guest, in fact, played a key role in persuading lawmakers in Kentucky to provide Medicare supplemental insurance plans for people in that state who are under 65, but who otherwise qualify for Medicare. Katie, thanks so much for being with us this week on Connecting ALS.
Katie Adams:
Yes, thank you for having me.
Jeremy Holden:
Hey, excited to jump into some recent activities you had leading the fight against ALS in your state. But can you start off by introducing yourself to listeners and telling us a little bit about your connection to ALS?
Katie Adams:
Sure. Yeah. Like you said, my name is Katie Adams. I'm from Henderson, Kentucky. You can probably hear that in my voice. I am 39 years old, and I was diagnosed with ALS on October 28th, 2022. I had been experiencing symptoms for about a year and a half before my diagnosis.
Jeremy Holden:
Now, Katie, you recently testified in front of Kentucky lawmakers about your challenges navigating Medicare, specifically discussing your fight to get coverage for a power wheelchair. Could you share that story with listeners?
Katie Adams:
Sure. So after I received my diagnosis, I of course applied for disability. And that process went fairly quickly, although I did have to tell the social security worker that ALS was exempt from the typical waiting period to receive your benefits of Medicare. So yeah, I read him the law, and he was like, "Oh, you're right." So that went fairly quickly. But once I got the disability and Medicare, I then had the process of finding a supplement to cover the 20% that Medicare does not. That was a very long and enduring process. And I figured out the hard way that I had no options in Kentucky to purchase Medigap insurance. And Medicare themselves and SHIP, which is a state health insurance education assistance program, they could not tell me the regulations that would prevent me from being able to accept affordable Medigap insurance.
Instead, they gave me five and a half pages of numbers to call that were companies that they said would offer Medigap insurance to me. But I found out that would've been a complete waste of time, because it would've been so unaffordable to purchase this plan. But even then, if I could afford it by some way, I would've denied in medical underwriting, because of my diagnosis. So it was either pay the 20% out of pocket that Medicare doesn't cover, or I had to go with a Medicare Advantage plan through UnitedHealthcare. And with my degree being in occupational therapy, and I worked in long-term care settings, I was very familiar with the disadvantage of the Advantage plans, but I had no choice. So just a few months after having the Medicare Advantage plan, they denied my power wheelchair in its entirety. And as you well know, that piece of equipment for ALS patients is extremely vital and will be where we live a large part of the rest of our lives.
So I was livid, when I received the denial. And it said that a physician reviewed my case and deemed the wheelchair not medically necessary. So I have no idea how any physician could ever say that this is not medically necessary. I'm not sure how that's ethical, and it's definitely not humane. So I told my told lawmakers my very emotional story, and my parents and my children were there in the background. And I could hear them bawling the entire time. But I got through the story. And the bill, which was House Bill 345 in Kentucky, was passed. And it went through the Senate after that and then signed into the law by the governor.
Jeremy Holden:
So the law previously in Kentucky... So under Medicare federally, people who qualify for disability, but are under the age of 65, qualify for Medigap, the supplemental Medicare insurance policies. But some states don't extend that provision for people under the age of 65, who otherwise qualify. And so the bill in Kentucky kind of cleaned that up and made those Medigap policies available for people under 65, who would otherwise qualify. Am I getting that right?
Katie Adams:
Yes, correct.
Jeremy Holden:
Okay.
Katie Adams:
I think there are some people under 65 who were able to purchase it, but it was like a house payment or more. But then specifically for patients with ALS and end-stage renal disease, we were not able to purchase it, because they would deny you in medical underwriting.
Jeremy Holden:
You mentioned your background working in long-term care. This was not your first time around navigating Medicare, navigating the intricacies of the insurance industry. You talked about the decision that the power chair was not medically necessary. But I guess what surprised you, given your background about some of the bureaucratic red tape and some of the administrative burdens that were put in front of you, as you're trying to access what I think everybody listening at home would think is an obvious durable medical equipment need?
Katie Adams:
Sure. Yeah. I was surprised. And I'll tell you why, because most of the time, like I said, I had denials. My patients had denials for a broken hip or a stroke, and they wouldn't allow them the therapy. I had even called. I was a rehab manager, so I called on my patients' behalves and fought for them, "If you just give them two more weeks of therapy, they can go home and be safe." Basically, they were willing to take the risk that the patient would go home and fall and die, and they wouldn't have to pay anymore. So I wasn't surprised, but then I was, because it's like you would think with a diagnosis such as ALS, they wouldn't be able to deny that, because they will only purchase one wheelchair in five years. So it's not like I could have them purchase a manual wheelchair, or even just a standard power chair, and that be okay for the duration of my disease. So I was surprised that they then they had a physician review that, because a kindergartner could look up ALS and tell you, "This is so bad. They need the best equipment ever."
Jeremy Holden:
Yeah.
Katie Adams:
So yes, I was surprised with that, but not completely shocked. Their job is to deny everything they can and hope that people don't fight it.
Jeremy Holden:
You did fight it, and you did so in the Kentucky State House. Now, prior to getting involved in the fight for that Medigap bill in Kentucky, had you had any experience in advocacy?
Katie Adams:
I had not. And it's funny what led me to do that. I definitely think it was a God thing. Being an occupational therapist, I've always had a passion to help others. So as soon as I was diagnosed, I knew I wanted to do something to help others who were going through this devastating disease that I was going through. I wasn't sure how that was going to look or how I was going to help, but it just happened. One day, I was going through the denial and was working on filing my appeal. I got a text from Jessica at the Kentucky ALS Association. And I could tell that the text wasn't meant for me, and it wasn't long. And she texted, and she said, "I'm sorry that was for somebody else." But I was like, "Hey, since you texted me, let me tell you what's been going on." And so I told her about my chair and about the situation where I had no choice for this terrible insurance. And she was like, "Oh my goodness. Do you care if I get you in touch with Alex at the ALS Association who works with advocacy?" And I was like, "Yes, 1,000% yes. Let's do this."
Jeremy Holden:
You were there for it, as they say. Mentioned earlier, your family was there as you were testifying, some of the emotional reaction you heard from them while you were sharing your story. Did you get any feedback from the lawmakers, either during your testimony or after your testimony, that was moving or that gave you a sense that you were heard?
Katie Adams:
Yes. It was a unanimous vote, because they vote immediately after you testify. So it was immediate. It was a unanimous yes vote from the Senate Health Committee that day. But as the individual senators voted, several of them asked to explain their votes. They all thanked us for bringing this bill to the table and fighting to make Kentuckians, who are disabled, to have better options when it comes to Medigap insurance. A lot of them got very emotional as well, and thanked me for sharing my story. Several of them talked to my kids and my parents and thanked them and told them to stay strong, and that they would do what they could to help this bill go through. It was so emotional, very heartwarming to hear and see their responses and their just behavior after my story and during my story.
I had one senator approach me afterwards, and she told me that she would pay out of her own pocket to cover my wheelchair. I told her it was a $24,000 wheelchair. And she was like, "I don't care. I'll do whatever it takes." But I politely thanked her, and I said, "Let's let the insurance do what they're supposed to do." And then one of the ladies that was there testifying with me, she was from the end-stage renal disease portion of it. She said she had been doing this for years and been in hearings for years like this and had never seen a reaction from lawmakers at a committee hearing like that before.
Jeremy Holden:
Yeah, how powerful. And I love the response of, "Let's let the the insurance industry do what they're supposed to do." That's such a great response to that. Public speaking is something that creates a lot of anxiety for folks who don't do it day in and day out. And I'm curious. You mentioned you had no prior experience doing advocacy work. What advice do you have for people listening who are maybe thinking about getting engaged with advocacy in their communities?
Katie Adams:
Yeah, I say just go for it. Pray about it. Ask God to show you how you can help. That day at Frankfort with my parents and my kids there, it was amazing. And so I'm glad that I was able to show my children to fight for what you need to stand up for. They learned a lot just how to pass a bill and everything. So if you want to do it, just go for it. Reach out to your local ALS Association and tell them you're interested in advocacy. Reach out to foundations such as Team Gleason or I AM ALS. And then John Driskell Hopkins of the Zac Brown Band just started a foundation called Hop On A Cure. And there are so many more foundations. I spend a large part of my day just looking up new stuff and seeing how can I help. I just filled out a thing with I AM ALS to host a Lou Gehrig's Day event in my town, so hopefully I get that worked out. But just find your passion and spread your word. It's hard to find purpose in my days now, but this has helped me, so I say go for it.
Jeremy Holden:
Yeah, go for it. And we can share some links in the show notes for people who are inspired and want to go for it. I may spend some time this afternoon listening to the Zac Brown Band now. Katie, tremendous victory in Kentucky on the Medigap bill. What's next for you?
Katie Adams:
Yeah, I'm going to just keep going. Like I said, it's been giving me purpose. I'm going to just keep doing what I can do to help and to get the word out. That's my plan.
Jeremy Holden:
Well, we look forward to seeing the next victories in your fight. And I really thank you for your time this week.
Katie Adams:
Thank you, Jeremy.
Jeremy Holden:
I want to thank my guests this week, Katie Adams and Rich Brennan. For more information on Medicare coverage of seat elevation, go back and listen to our episode of regulatory advocacy and action. And for more on the fight for Medigap coverage in states, check out our episode Filling the Gap in Medicare Coverage. If you like this episode, share it with a friend. And while you're at it, please rate and review Connecting ALS wherever you listen to podcasts. It's a great way for us to connect with more listeners. Our production partner for this series is CitizenRacecar, post-production by Alex Brouwer, production Management by Gabriela Montequin supervised by David Hoffman. That's going to do it for this week. Thanks for tuning in. We'll connect with you again soon.