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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.
Kathleen Sheehan:
We were successful last year in winning $1 million from Congress to ask the National Academies to do this kind of study. Of course, the study is basically designed around our strategic vision of making ALS a livable disease while we're urgently searching for treatments and cures.
Jeremy Holden:
Hello everyone, and welcome to Connecting ALS. I am your host, Jeremy Holden.
August is ALS Advocacy Month. During the coming weeks, advocates from across the country will meet with key lawmakers in their local congressional districts to press for better public policies that can help make ALS livable for everyone everywhere while accelerating the search for treatments and ways to cure the disease. To find out ways to be part of ALS Advocacy Month, go to als.org or check out the link in the show notes.
Advocacy efforts advanced in a big way recently as the National Academies of Sciences, Engineering, and Medicine continued its study on ways-
Kathleen Sheehan:
Right now, an expert community is conducting-
Jeremy Holden:
... to accelerate the development of treatments and improve the-
Kathleen Sheehan:
... a study to identify and recommend key actions-
Jeremy Holden:
... quality of life for people living with ALS today.
Kathleen Sheehan:
... for the public, private, and nonprofit sectors-
Jeremy Holden:
That work will culminate in a report with recommendations for key actions for federal agencies-
Kathleen Sheehan:
... to undertake to make ALS a livable disease within the next decade.
Jeremy Holden:
... the pharmaceutical industry, and non-governmental organizations can take-
Kathleen Sheehan:
And so what they're going to do is they're going to look at ways for more effective and meaningful-
Jeremy Holden:
... including identifying opportunities for collaboration.
Kathleen Sheehan:
... treatments and cures, interventions to reduce and prevent the progression-
Jeremy Holden:
The NAS committee will study the landscape of ALS therapeutic development-
Kathleen Sheehan:
... and complications of ALS, and then challenges ...
Jeremy Holden:
... care, services, and supports, such as pathways for developing more effective and meaningful treatments and a cure; interventions to reduce and prevent the progression and complications of ALS; challenges and obstacles for public, private, and nonprofit sectors to overcome to make ALS a livable disease; the type and range of care and services people with ALS and their families need, and how to ensure they receive comprehensive quality care; what care, services, and preventive measures people at risk of ALS need; and how to improve the quality of life, health, and wellbeing of affected individuals and families.
Melanie Lendnal, senior vice president of policy and advocacy at the ALS Association, recently testified before the National Academies' working group on the need for better access to healthcare for people living with ALS.
Melanie Lendnal:
When someone is diagnosed with ALS, it is overwhelming trying to figure out even what type of insurance options are out there and available, and then what would be the best options for those individuals based on not, of course, their own individual situations, but on where they live. That goes to the issue of the patchwork of laws that we have relative to people living with ALS throughout this country.
Access to multidisciplinary care, this is the gold standard for people who have been diagnosed with ALS. Research has demonstrated that this increases both quality and quantity of life, but there aren't enough multidisciplinary clinics for people living with ALS throughout the United States that are accessible.
Of course, this creates disparities throughout the country based on where an individual lives. We primarily see lack of access to multidisciplinary care, as you would expect, in the rural areas of this country, and that can certainly impact minority populations, underserved populations, and people who lack the socioeconomic resources to be able to access a multidisciplinary clinic.
Based on what type of insurance you have, there's all different rules that apply. Prior authorization is a massive barrier to care for people living with ALS. It's one that we are seeing at the association level increasing throughout the country.
One of the things that we know that is true for people living with ALS is the one thing people living with ALS do not have is extra time to waste. This is a disease that typically from diagnosis to death will take about two to five years. So people living with ALS, we have found, want to have as much time as possible with their friends and family enjoying life, not having time weaponized against them by insurance companies trying to fight for the care that they need.
Jeremy Holden:
For more on the NAS study on making ALS livable, we turn this week to Kathleen Sheehan, vice president of public policy at the ALS Association. Kathleen, thanks so much for being with us this week on Connecting ALS.
Kathleen Sheehan:
Thanks, Jeremy. It's great to be with you.
Jeremy Holden:
Exciting times. I know our colleague, Melanie Lendnal, testified recently in front of the National Academy of Science, and that's a great segue for me to ask the first question because I think before we get into the what of it all of what's happening over at the National Academy, I want to think about the who. So what is the National Academy of Sciences? What's its role in shaping public policy?
Kathleen Sheehan:
Sure. The National Academy, it's actually called National Academies of Science, Engineering, and Medicine, and they're a private, nonprofit institution that provides expert advice in several areas including healthcare. Their work is highly respected by legislators at the federal level and the state level and by companies. Their work can really be really important because they bring together experts and researchers.
Their work includes research and consensus building to help shape good public policies, to inform public opinion, and they actually work in science, engineering, and medicine. They are a nonpolitical organization, and that is why their opinion is so important and the work they do is so important.
Jeremy Holden:
Why are they studying ALS right now? Of all the times, why now? What was the impetus behind their current study into ALS?
Kathleen Sheehan:
Yeah, so this is really important. The ALS Association has been working for the last six years to convince Congress to authorize this study and to provide the funding for it. We were successful last year in winning $1 million from Congress to ask the National Academies to do this kind of study.
Of course, the study is basically designed around our strategic vision of making ALS a livable disease while we're urgently searching for treatments and cures. So we're really excited that Congress provide the money and basically set the mission along those lines.
The way they work is right now an expert committee is conducting a study to identify and recommend key actions for the public, private, and nonprofit sectors to undertake to make ALS a livable disease within the next decade.
What they're going to do is they're going to look at ways to more effective and meaningful treatments and cures, interventions to reduce and prevent the progression and complications of ALS, and then challenges that might make that difficult to accomplish.
They're also going to come up, I believe, with some recommended solutions. They're also looking at, and this is really important, the type and range of care and services that people with ALS and their families need and how to ensure that they get more comprehensive quality care in their lives, in their healthcare and finances, and all the supports that people need.
They began their work earlier this year, and a final report will be published next June, so June of 2024.
Jeremy Holden:
It's remarkable to think about the extent to which that concept of making ALS livable has just really seeped into the community of researchers and policymakers, and then the folks we talk to on this program, how it's really just become such an important concept in the work that's being done to create a world without ALS.
You mentioned that June report that's expected from NAS. What happens there? What's the potential impact of the study that they're undertaking, and then what's the potential impact on the ALS community?
Kathleen Sheehan:
The reason we wanted the National Academies to do this study was we really know that they do have a significant impact. Back in 2006, the National Academies did a study on ALS and military service, and their outcome of their study was they really identified the association between military service and ALS. I think as everyone knows, there's a much greater occurrence of ALS in people who have served in the military than people who have not.
The study was done in 2006, and then the impact was that in 2008, more research was done, a little bit more research was done. In 2008, the Veterans Administration established ALS as a service-connected disease. That means if you're a veteran and you go to the VAA, excuse me the VA, and you bring in documentation that shows that you have ALS, you will be immediately eligible for a comprehensive set of benefits not only for you, but also for your families. So excellent quality healthcare, and they actually provide a lot of support to caregivers, including some financial support. So if you're a veteran, you have ALS, you're going to get pretty good services from the VA. So that's why it was important.
We want the same results for this National Academy report. So we want to see major changes in how government and private entities and nonprofits work to urgently find treatments, insurers, and really improve the quality of care and extend life for people living with ALS and their families all across the United States.
Most importantly, we want the National Academies to really look carefully at how to identify risk factors to prevent ALS. The Centers for Disease Control have done some really interesting work looking at environmental factors and genetic factors, and our goal is to be sure that we can help prevent ALS in the future.
Jeremy Holden:
I mentioned earlier the ALS Association was represented during a recent committee workshop. What was the message that we brought to that committee?
Kathleen Sheehan:
Yeah, we had two people who testified, and so it was really terrific. Actually, everyone who spoke at this workshop was great. When we get to the end of this discussion, I'm going to provide details on how you can get all the information that was shared at that workshop.
The two people who testified for the ALS Association were Lori Banker-Horner, she's our senior director for ALS Certified Center programs. What Lori focused on was the need to expand the number of ALS clinics that can provide multidisciplinary care, and also do clinical research so that there'll be more opportunities for people living with ALS to get the specialized care that they need and also more opportunities to be engaged in clinical research.
She also talked about how to expand the capacity of current ALS clinics because it's oftentimes hard to get an appointment at one of the current ALS clinics simply because they don't have adequate funding, they don't have adequate staff. Actually right now, we're working on a bill in Congress to provide supplemental funding to the ALS clinics so that they can expand the number of people that they're currently serving.
Most importantly, we want to keep telehealth in place to serve people living with ALS who need specialized care, but don't live near or can't get to an ALS clinic. So that's what Lori spoke about.
Melanie Lendnal, our senior vice president for advocacy and policy, spoke about very serious problems with accessing care. She was largely focusing on insurance coverage. We've seen a lot of problems, and they're actually increasing in Medicare Advantage plans. What we've been looking at is problems, serious problems, with prior authorization for some Medicare Advantage plans. This was brought to our attention by people living with ALS and by their physicians who said, "We are spending a lot of time fighting for the care that we're entitled to under Medicare." Medicare Advantage plans are supposed to provide the same kind of care that Medicare or fee-for-service plans, but sometimes they do not. That's a big priority for the Association in terms of working with CMS and working with Congress to come up with a solution so that doesn't keep happening.
Medicare Advantage plans, there's a couple of them that are not doing a good job. They're actually using extended delays. In other words, the physician sends in all the documentation needed for a medically necessary medication or non-invasive ventilator, and the Medicare Advantage company says, "That's not enough information. Send us more information." So the physicians will send several different packets of information to Medicare Advantage, and Medicare Advantage will just delay, sometimes for a pretty long time.
Medicare Advantage plans have also been using a fail first policy, and that means if the physician says you need a non-invasive ventilator, the Medicare Advantage plan would come back and say, "We don't really think you need a non-invasive ventilator." Those ventilators, by the way, are life supporting and they're prescribed by a physician and they're critically important. But the Medicare Advantage plan will say, "We're going to start you on a sleep apnea machine first, and we're going to see how that works. Then if you fail, if you can't breathe, then we'll get you the non-invasive ventilator." Of course, that is just totally unacceptable. The physicians and the patients spend a lot of time fighting, and sometimes patients end up going to emergency rooms to get the care that they need, and nobody really wants to do that. People prefer to get the kind of care that they need at home.
Lastly, some of these Medicare Advantage plans actually just deny care. They go through this process of delay and fail first, and then when they get to the end of it, they say, "Sorry, you're denied. You're not going to get the care that you need." The patients are then having to appeal the denials. Believe it or not, many of the denials by Medicare Advantage plans are overturned during the final stages of the appeal process. But during this time, patients are suffering. They're having difficulty breathing. They're not getting the medications that they need, and, of course, their family members are suffering with them. Actually, our physicians are really, I think, upset about having to put in so much time and having their professional judgment ignored by some of these Medicare Advantage plans.
Jeremy Holden:
Frustrations that certainly many listeners have dealt with trying to navigate the insurance system, and the data from ALS Focus demonstrates that those frustrations are shared with the community.
Going back to the NAS, where does the committee's work go from here? What other voices are they going to hear from in the coming weeks and months leading up to that June report?
Kathleen Sheehan:
Yeah, let me finish one other point that I forgot to make earlier, and that is here's what we think that the National Academies should be doing. We think they should be working in the area of insurance coverage to ensure immediate access to medically necessary and appropriate care as prescribed by their physician regardless of their insurance company. So whether you're on Medicare or whether you're on Medicare Advantage or whether you're on private insurance, people should get what they need immediately.
Then we want the National Academy to make it very clear that major research investments are needed to dramatically expand treatments and cures right away, and we need more money to do that.
Then last, we want to be sure the National Academy comes out very clearly supporting helping family and paid caregivers, who really are the most critical part of providing care for people living with ALS. People want to stay home, their family members want them to stay home, and they make tremendous sacrifices to have that happen, including a lot of financial and emotional stress. So we want to be sure the National Academy comes out very clearly.
I do want to tell you that everyone can go to the internet right away and find out more about the National Academies, and you can just Google National Academies and ALS. Jeremy, I know you're going to publish the website as well.
Jeremy Holden:
Sure.
Kathleen Sheehan:
In addition to the workshop that took place on August the 10th, there's going to be two more workshops coming up. The one workshop will be August 23rd, and the other one will be September 1st. You can easily register for them just by going to National Academies' website. Each one of them will have a different theme and different speakers, and it's a great opportunity to find out more about this work. The National Academies is encouraging people to provide input, and it's very important them to hear from people living with ALS, from physicians, everyone along the line.
The one thing that's important about the National Academies is that if you send information to the National Academies, it is part of their public discussion, and so I would encourage you not to send in any personal information.
I do want to tell you that the August 10th webinar, you didn't miss it, it will be recorded and posted on the National Academies' website very soon. I highly recommend that you go back and listen to it. It had several physicians that were talking about non-invasive ventilators and access to care. It also had a person living with ALS, who really told the story of his life, and lots of other great people. It was a 12:00 to 3:00 and a webinar, and you can listen to it in segments. You don't have to listen to it at one time. I would encourage you to go back, listen to the recording, and then to register for the two that are coming up on August 23rd and September 1st. I think you'll really get a lot out of it.
Jeremy Holden:
We will share links in the show notes so you can find that recording from the August 10th webinar and opportunities to view upcoming webinars and to have your voice heard. Kathleen, thanks so much for your time this week.
Kathleen Sheehan:
Thanks, Jeremy. It was great to talk to you.
Jeremy Holden:
Thank you to my guest this week, Kathleen Sheehan. If you liked this episode, please share it with a friend. While you're at it, 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 the 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.