The Campaign to Cure ALS with Brian Wallach and Sandra Abrevaya

Episode Transcript

Dr. Daniel Correa:
From the American Academy of Neurology, I'm Dr. Daniel Correa. This is the Brain & Life podcast.
We're deep into May. Springtime brings change and reflection and hope for our summer. Similarly, progressive neurodegenerative conditions is an area that needs more than just another Ice Bucket Challenge, but hope and passion to make change and move things forward. This May, in honor of ALS Awareness month, we are highlighting the amazing advocacy work of the I AM ALS organization. Brian Wallach and Sandra Abrevaya had spent years working on legislation, elections and advocacy in our government. Later, when ALS came into their lives, they brought this passion and skills to help unify ALS organizations and address the gaps in the support that's needed for the ALS community and other neurodegenerative disorders. In this episode, we'll also be featuring our medical expert, Dr. Jinsy Andrews. She is a leader in clinical trials and research for ALS, and also was featured in the documentary No Ordinary Campaign.
In the coming weeks, stay tuned with us. June 1st, I sit down with author Mary Beth Albright to discuss her book, Eat & Flourish: How Food Supports Emotional Wellbeing. I know we're always interested in how nutrition can help our brain health. And in these following weeks we'll also be introducing some new voices and guest hosts. June 8th, the associate editor of the Brain & Life Magazine, Dr. Sarah Song, a stroke specialist, returns in that episode where she interviews Dr. Roy Hamilton on the neurologic condition, agnosia. Stay tuned and listen to that episode to learn what is agnosia and how does that impact our brain health or what kinds of conditions it can be associated with.
Welcome back to the Brain & Life podcast. Today I'm overjoyed to be here along with two champions for ALS during ALS awareness month. I'm here with Brian Wallach. He's co-founder and board co-chair of the I AM ALS organization. In addition to co-founding this nonprofit, Brian was an assistant US attorney and served also as President Obama's campaign and in the administration. And then he started down the path of advocacy for the ALS community after his own diagnosis with ALS in 2017 at age 37.
We're also joined by his co-founder of the I AM ALS organization, importantly his family partner and care partner on this journey. Sandra Abrevaya. Sandra is the mom of two spunky little girls and a former founding CEO in the nonprofit sector, but joined with Brian and brought all of their energy, attention, and momentum to help the community with neurodegenerative disorders, including providing hope to the ALS community. A lot of this story can really be more detailed in a documentary that's out there on the film circuit and hopefully will be accessible to everyone soon. So please look for this documentary, No Ordinary Campaign, and today I'm so glad to be joined by you, Brian and Sandra.

Sandra Abrevaya:
Thank you so much for having us.

Brian Wallach:
[Inaudible]

Sandra Abrevaya:
And thank you times two, Brian is saying,

Dr. Daniel Correa:
Yeah, so throughout the interview today, Sandra will be helping put some of Brian's words to us in audio. We're glad to have you both here. So Sandra, share with us what it was like to start your relationship together in the whirlwind of a presidential campaign.

Sandra Abrevaya:
Well, I was supposed to be focused on my work, which I suppose ultimately partnering up with Brian Wallach, achieved that goal. But I did find myself a little smitten with this campaign staffer who had actually been ... Brian, you were, what number on the campaign were you?

Brian Wallach:
[Inaudible]

Sandra Abrevaya:
Brian is claiming, again, you can fact check Brian Wallach, that he was one of the first 30 campaign staffers in New Hampshire for the first primary for the presidential campaign in 2008. I was a much later addition to the campaign. So when I joined, Brian had been on the campaign for some time and I met him on the general election in New Hampshire.

Dr. Daniel Correa:
Brian was diagnosed in 2017 with ALS, and if you want to know more about some of the early symptoms of ALS, please go to their website. We also had a previous episode with John Driskell Hopkins and we talked about the early onset of ALS and with our expert some of its initial symptoms. We want to jump in right to the work that they've been doing for the community.
So Brian and Sandra, in 2017, right from the beginning you heard the news of the prognosis for people living with ALS in our community and we're told really just to get your life in order, but you took that as a charge for public advocacy and service. Help us understand, because some people might wonder. Why public service and advocacy instead of more time with your family?

Sandra Abrevaya:
Brian, what do you say?

Brian Wallach:
[Inaudible]

Sandra Abrevaya:
At the beginning, I was told that I would only live six months. So for the first few months we turned inward and focused on family, but when it became clear that I would live way more than six months, we stepped back and thought about how we could use our backgrounds to help accelerate the fight. And we saw two things. Number one, ALS as it appeared on TV was too depressing for even the two of us to watch. So we knew we had to change the national story.
Number two, we looked around the community and saw amazing people, but they did not have a home where their voices could come together and in a movement that can drive real change. So with those two ideas, we founded I AM ALS, and have moved at the speed of ALS ever since, because we feel authentic hope, but we know that hope alone will not turn ALS from fatal to chronic.

Dr. Daniel Correa:
We have to all thank you both so much because I know that a lot of the work that I AM ALS and you too, working with many other organizations has brought a lot of hope, but also even for the doctors and the care providers who oftentimes just felt helpless in being there. And a lot of what you're doing also is helping to give us a sense that there's hope. There's hope in the research and there's hope in the direction of supporting people's care. I want to ask you some questions about things that are in the documentary, but I encourage everyone that definitely watches the documentary because it's not just about the facts of things that happen, it's the inspiration of Brian and all of the many people living with ALS and their family that have put their heart and their energy into this movement.
So with you at the charge with I AM ALS organization, you guys have pushed through several bills to not only increase funding for ALS research to help us learn more about it and other disorders that cause degeneration of the brain, but also in expanding access to some of the experimental treatments. Can you briefly tell us about some of these efforts that you've successfully brought forward?

Sandra Abrevaya:
Yeah, Brian, should I jump in? Okay. Yeah. I think to your point, the very first thing we did was focus on increased federal funding through the Department of Defense, through NIH, and to your point, with the community support drove a lot of success there and essentially have generated an additional $80 million in federal funding every single year, which essentially is the equivalent of the Ice Bucket Challenge happening every year, but without all of the hoopla. I call it now the silent government Ice Bucket Challenge now generating that kind of support and resources for ALS research. Then the second thing we did to your point was we focused on legislation and there was a bill that had languished a bit in Congress, focused on eliminating the waiting period for families to receive Social Security Disability benefits. And Brian and I are privileged to have support from family and additional resources to be able to manage the incredible expenses of this illness.
However, the vast majority of families do not have those resources and many of them go bankrupt with this disease and trying to just get by. And so Brian and I teamed up, grew I AM ALS with Team Gleason to drive forward this bill focused on eliminating the waiting period for families with ALS to receive Social Security Disability benefits. And together, I AM ALS and Team Gleason, and in concert with other organizations, took it across the finish line and it became law. And so that was a huge win for so many families that were just suffering incredible financial hardship. And all the future families that will be diagnosed, it will give them additional support that is just critical in being able to manage the disease. The legislative item we focused on was actually a bill that Brian came up with, the idea of four based on his own experience.
In ALS, once you're past a certain point in the illness, you don't qualify for clinical trials anymore. And thank goodness for the work of the Ice Bucket Challenge because it has driven, to Brian's point, a lot of reasons for authentic hope. There are a lot of really exciting treatments that are in that phase two, phase three clinical trial pipeline. But once you're a certain period of time into the disease, you can't get access to those clinical trials. And so Brian, along with others wrote ACT for ALS, which essentially opens up the door for families like us to get access to a therapy once it's been proven safe in the clinical trial process and there's some evidence of efficacy, but the trial has not completed the phase three portion yet.
And given the length of time it typically takes to do that, it's giving patients access to it in that moment so that patients don't have to wait another three years because many of us don't have that kind of time. And so that access is critical for patients. And at the same time, it's going to give us a ton more information on the data of patients who are accessing drugs that we weren't able to study earlier. So ACT for ALS is both an incredible tool for giving patients expanded access to treatments earlier and a huge advancement for research and data.
And one thing to add, I think it's important to say that 90% of ALS patients do not qualify for clinical trials. So essentially 90% of the ALS community is locked in a burning building and the expanded access program opens up the door and it gives us access to treatments that we might not be a hundred percent clear on all the nuances of efficacy and what subgroups it works for and how, but at least we know it's safe because it's past the early phases of the clinical trial and we know there's some evidence of possible efficacy. And so for those of us who know what's behind door number two, which is certain death in a short timeframe, it is a game changer.

Dr. Daniel Correa:
And Sandra, people bring up with some of these new medications. There's a bit of a question about the effect of the medicine, and then they hear out there in the news that some medicine, at least with the early evidence, gives people four months, six months, a little bit more time, and some people may not really understand whether or not does four months and six months matter, what does that mean for you, for Brian and for these families?

Sandra Abrevaya:
Yeah, I mean the reason oncology is where it's at is because it embraced that approach. Drugs are routinely approved by the oncology division of FDA that extend life by three months and then another two months. And you just keep stacking on those windows of time and you buy people time to be here, to be alive for that eventual either more curative therapy or cocktail of drugs like we were able to accomplish with HIV AIDS. And so that time, that four months, that six months is not only precious time that Brian gets to spend with us alive, taking care of his daughters who are now five and seven, but also it gives him a better shot at still being alive to take advantage of those potentially more potent therapies that could come down the pipeline in a couple more years.
And I think it's important to mention that ALS is a heterogeneous disease. So what we aim to do is to have enough medications approved that we can come up with cocktails to treat patients who have different subtypes of the disease. So we are personalizing ... What's the word?
Oh, so we are plagiarizing HIV and oncology.

Dr. Daniel Correa:
The alternate approach of how thinking through the science and the initial approaches to medicine that each of you have brought to the community, and largely I think comes from your patient and family centered approach of the organization and your advocacy work. I hope that many more individuals get additional opportunities for time with family, another birthday and an opportunity to try and receive one of these experimental therapies to see where it fits for them. And hopefully, as you said, you mentioned heterogeneous, meaning the way the ALS presents for different individuals can be very different, both how fast it goes and what parts of their body are affected at different stages.
Hopefully we get to the stage where we can tailor or develop a precision or personalized medicine approach for each individual or what their goals are. You mentioned, unfortunately, many people with an ALS diagnosis don't end up qualifying for research participation, but for ALS and many of these other neurodegenerative disorders, what would you say to people in the community about the importance of research participation and supporting research as it moves forward?

Sandra Abrevaya:
I would say everyone who is able to be a part of research should be a part of it because that is the way that we will turn this disease, these diseases, from fatal to chronic and what we see more and more that there are all types, no, there are overlaps between the different neurodegenerative diseases. So the more we are able to identify those overlaps, the more we can use a disease like ALS that moves rapidly, to test the therapies and see if there is efficacy for a gene or a pathway that ALS may have in common with Parkinson's or MS or Alzheimer's.

Dr. Daniel Correa:
Yeah, we can hope. One of the things that's a big challenge with many of the medical conditions that you referred to including ALS, is the level of specialized care, all the services and additional supportive services that are needed and sometimes even just getting to the specialized centers. But the two of you with I AM ALS have already started also to tackle that issue for the community. Please tell us a little bit about Synaptic Care.

Sandra Abrevaya:
Yeah, absolutely. Well, we actually ended up founding Synaptic Care together, just like we did found I AM ALS together. But it is a separate entity and it is a outpatient specialty care provider for neurodegenerative diseases. And it's intended to be a partner to in-person neurologist and Parkinson's specialists and ALS specialists because we very much are grounded in the understanding that everybody needs in-person care 200%. And then how do we support that in-person team that's providing care to patients? How do we augment it? How do we give people additional telehealth time? How do we deal with pre-authorization paperwork and take that off of the plate of the physicians who are on the ground who have a much better use of their time?
And how do we augment that existing system of support for patients so that the physicians like yourself have that additional infrastructure and support to serve patients, and patients feel like they can get additional information support enrolling in clinical trials, help getting insurance to approve some of the medications that FDA has newly approved. And so the theory of Synaptic Care is truly to deepen the opportunity to care for families with ALS, PLS, Parkinson's, and soon to expand into other neurodegenerative diseases. And in doing so, really also support the physicians who are seeing these patients in person.
And I think one thing to add to that is that in just over a year we're able to see patients from all 50 states. And that is important because many patients are not able to make it to an in-person clinic. So having a virtual clinic partner that partners with the on the ground neurologist is really important, because it allows us to modernize care, democratize care, and make sure that we have as many different people in clinical trials as possible.

Dr. Daniel Correa:
It sounds like a resource that we're going to need throughout all of our healthcare system because unfortunately so many people have limited access, but it's an amazing start. And for the members and our listeners that are part of the community living with neurologic disorders, whether it's ALS or anything else, many of us might see the documentary or listening to you and all the work that you two have done, leading forward a group of advocates, might wonder, what can we do to help?

Sandra Abrevaya:
So two things. Number one, join the movement because the way we make progress is having as many people as possible make as much noise as possible. And number two, we want to work with you to help share the message that all the neurodegenerative diseases will affect every family. So we have to work together to get ahead of them because we know that there are promising treatments in the pipeline, but we also know that there is a shortage of neurologists, and so we have to move with urgency together. So if you want to reach out to us about partnering or about how we can help you, we would love that.

Dr. Daniel Correa:
And Sandra, given that May is ALS awareness month, what do you want to tell the partners and families of people who are newly diagnosed with ALS?

Sandra Abrevaya:
I think we've made a lot of progress in the last several years, and Brian and I do feel authentic reasons for hope. And I think I AM ALS offers a sense of community, belonging and purpose, and an ability to Brian's point, to be a part of driving real change in the system. And so I hope people reach out and join that community because it's an incredibly supportive one.
Then whereas in the past when people were diagnosed and they wanted advice about off-label therapies and clinical trials and how to get into a top ALS clinic, Brian and I decided two people fielding calls on the side evenings and weekends was not infrastructure and systemically going to help nationwide. And so we built Synaptic Cure. So we really believe we have a very special resource now for ALS and Parkinson's, to help families get all the support that they want to need and do it in partnership with whoever they're seeing in person. And so I hope people take advantage of these efforts we've undertaken because we feel very genuinely that it's been worth all the hard work to stand them up and to have them serve people.

Dr. Daniel Correa:
And we'll make sure to include information about I AM ALS, the Synaptic Cure website and resources, and also the No Ordinary Campaign documentary in the show notes. Brian and Sandra, thank you so much for taking the charge of advocacy and service in support of the ALS community, and stepping forward to bring so much more to hope and options for research and direction. You've taken a lot of time to support all of us out there and we hope that we can provide you both back, some of that, even a small part. Thank you again for joining us and sharing your story with our listeners.

Sandra Abrevaya:
Thank you.
And thank you for having us and sharing our story with the world. It means everything.

Dr. Daniel Correa:
We're excited to start taking your questions and feedback and sharing those responses here with you on the podcast. You can also email or record an audio message and send it to blpodcast@brainandlife.org.
Welcome back to the Brain & Life podcast. So that was an amazing discussion with Brian and Sandra. And now we are joined by Dr. Jinsy Andrews. She's the director of neuromuscular clinical trials at Columbia University and a specialist in Amyotrophic lateral sclerosis, or as we'll refer to as ALS. She works at the Eleanor and Lou Gehrig ALS Center there at Columbia. And she's extensively worked with community-led organizations and clinical trial development to enact change in improvements in care for those living with ALS and other nerve and muscle disorders. You'll also see her featured in Brian and Sandra's documentary, No Ordinary Campaign. We're happy she could join us to continue our discussion about ALS, Brian and Sandra's journey, this documentary and the mission to move forward science and treatments for ALS Jinsy, when did you first meet Brian and Sandra?

Dr. Jinsy Andrews:
Well, I don't know if they remember, but I did meet them at a clinical trial consortium meeting. The clinical trial consortium is called NEALS, and they were there early in his diagnosis to participate in a clinical research learning institute, which is this clinical trial consortium actually brings in people living with ALS and our caregivers to be part of the team that does advocacy to help push change and evolution in clinical trials and research and trying to create efficiencies and advocacy for potentially new therapies for ALS.

Dr. Daniel Correa:
Over 17 million people participated in the viral Ice Bucket Challenge and raised over 115 million for ALS. That's amazing. But we also know that even the majority of those people who participated did not understand what is ALS. So how would you describe ALS to those with limited understanding or exposure to the condition?

Dr. Jinsy Andrews:
Yeah, I've been taking care of people living with ALS since 2005, and so I've had the experience of being in the space before and after the Ice Bucket Challenge. And it's really remarkable how that has increased, I think, the global community's awareness of ALS or it's often referred to in Europe as motor neurone disease, or sometimes in the US we call it Lou Gehrig's disease. But ALS stands for amyotropic lateral sclerosis and it is considered a neurodegenerative disease. These are diseases like Alzheimer's disease, Parkinson's disease, Huntington's disease, that affect the aging population. And ALS is a disease of the motor nerves that control your voluntary movements. So the voluntary movements include speaking and swallowing muscles, they involve your arms and hands, your legs, even your diaphragm and your chest muscles that help you breathe.
So when someone gets ALS, their motor nerves get sick, and when they don't function the way they're supposed to, that input is lost to the muscles that help you control those voluntary things that I just described. And the tough part about it is that it's rapidly progressive for most people and it can cause paralysis of the arms and legs and loss of speech and eventually loss of breathing, and usually people will pass. And right now, at this point in time, we don't have a cure, but we have a lot of tools to help mitigate the disease progression and help preserve independence.

Dr. Daniel Correa:
And for those interested in a little bit of brain and body anatomy, there are many connections of the nerves from the tips and the ends of the brain all the way down to those little muscles. So when you say the motor nerves are involved in ALS, which ones are the ones that seem to degenerate or be most affected by this condition?

Dr. Jinsy Andrews:
When we talk about nerves in general, I always explain to people we have nerves that help us move. Those are the motor nerves. We have nerves that help you feel, which is the sensory nerves. And then we have nerves that control automatic function, which we call the autonomic system. And here with ALS, we're talking about the motor nerves, and the whole system that's affected really comes from the brain. So your brain has a motor control system and there's a pathway that goes all the way down the spinal cord, and that's the upper motor neuron pathway. And that path can then connects to a nerves that exit your spinal cord and go out to your muscles. That's the lower motor neuron pathway. And anything that disrupts either the path from the brain to the spinal cord or the nerves that exit out to your muscles can result in weakness and problems moving. And so ALS affects those two pathways, the upper motor neuron pathway and the lower motor neuro pathway that controls voluntary movement.

Dr. Daniel Correa:
How often are new people diagnosed with ALS?

Dr. Jinsy Andrews:
I think the diagnosis can be a little bit challenging, and I think probably we underdiagnose because we don't have a test, a diagnostic test for ALS. But typically there's about 30,000 people that are diagnosed at any given time. So that's a prevalence. Incidence is about one in 100,000. But the problem is people present very differently. So some people present as their first symptom is speaking problems. Sometimes it's hand weakness as their first symptom, sometimes it's walking difficulty. So right off the bat, everybody looks different when they first come to their visit and it's based on clinical exam, the history and tests that help us determine that the motor nerves are not working properly and trying to rule out anything else that mimics the same symptoms.
So it's really hard to diagnose someone. And the other major issue is that someone can be in their teens or early 20s or someone can be in their 90s as presenting as their first symptom, and the peak incidence really occurs between 50 and 60 or 55 to 65. But it's a wide array, so you could just see right off the bat that this is a challenging diagnosis.

Dr. Daniel Correa:
Does it seem to impact just that older age group or is this changing?

Dr. Jinsy Andrews:
I think anyone is at risk, and I think if anyone's listening to this, they should really be aware about ALS because anyone, you, me, listening could be at risk. There are people at increased risk in the US. We know that military veterans have an increased risk of developing ALS later in life. And then there are a small percentage of people that have family history of ALS or neurodegenerative disease in their family. And we now know that there's a small percentage of people that may carry a genetic mutation that is likely the cause of their disease. And so sometimes they can be older, sometimes people who present younger, meaning in their 20s and 30s, we look really hard for those genetic mutations. And so the age at which somebody can present can be really variable.

Dr. Daniel Correa:
You mentioned the veterans. And so whether it's being a veteran or having a history of traumatic brain injury, we're not sure of. Brian himself was also an athlete. And it seems like most often the people we hear about in the news are former football players or other athletes and celebrities. Is there something about that that we understand or know already that certain activities or people may be at higher risk, or is this just sort of more of an exposure effect from the news?

Dr. Jinsy Andrews:
I think there's a concerted effort in our field now to really look at environmental factors or risk factors that may lead to an increased risk of developing ALS. So we do know that there are clusters of ALS amongst those that are professional athletes. We do know that military veterans have an association with ALS, and we do know that there are certain chemicals, organophosphates, and toxins that are neurotoxic like Agent Orange and sarin gas in wartime, may have some association, but we haven't in our field established that these are causative or definitively linked to an increased risk. We know that there are some associations. So there's nothing that I can tell somebody today that's healthy to say, "You shouldn't do this because this will lead to an increased risk of ALS." We don't gotten there yet, but that's our hope for the future.

Dr. Daniel Correa:
Now, Jinsy particularly, you've worked a lot with moving forward treatments. Brian and Sandra both co-founded the organization I AM ALS. From your perspective as an ALS healthcare provider and clinical trial specialist, how has their efforts changed the outlook for ALS?

Dr. Jinsy Andrews:
I think there's two things that they've done really effectively. Number one is raising awareness of ALS and organizing the community to be one voice. There were smaller efforts with different organizations, but really putting their heart and soul into intensely focusing on how we're doing things and to ask ourselves the question, can we do it better, is something they've really done a great job at. And once we say we can do certain things better, the next question is how? I think their organization of the community has allowed us to ask these questions, but also try to address them and press the time urgency button. It's not something to think about later, we got to do this now.
The second thing is that they both have experiences through their occupations and professions in politics and law. And so I think their advocacy has helped us really leverage their experience to look at the way we do things and whether there's changes that can be made in our health policy and regulations to evaluate drugs in a way that's efficient, meaning we are doing it in a timely fashion. Are we thoughtful about sample size, the number of people we need to enroll in clinical trials and even exposed to placebos? And also thoughtful about taking the perspective of people living with the disease and their journey, and are we designing clinical trials in a way that's taking that into consideration? And that has been a big evolution in the last three years in ALS.

Dr. Daniel Correa:
Unfortunately. I think there are some people that might wonder why so many millions of dollars and advocacy and work is going into a condition that affects a smaller portion of the population. But it sounds like so much of what you're saying and what we're learning, both from ALS and these advocacy steps and moving forward, the science might impact other conditions and other science. Can you explore on that a little bit? I think they touch on it both in the documentary, but I'd like to hear from you why dollars for one condition and effort in one might impact many other conditions.

Dr. Jinsy Andrews:
I think that's an excellent question. And it's not always intuitive or really obvious to people looking into the ALS space. But the reality is ALS already has a group of people that are very engaged in evaluating investigational products and a clinical trial consortium and specialty center. So there's this infrastructure that's already set up. If we're able to evaluate drugs targeting different mechanisms, there are shared mechanisms across neurodegenerative diseases. So for example, ALS may affect only a certain number of people in the United States, but there is neuro inflammation, which is involved in Parkinson's disease and Alzheimer's disease. There is mitochondrial dysfunction, which is also apparent in many other neurological diseases. There is oxidative stress which is involved in many other neurological diseases.
So the hope is that if we're able to evaluate a therapy or understand ALS, it can help unlock or potentially realize an investigational product for another disease condition. The other major thing is that it provides also a model so that if there are other neurological or other diseases that are considered rare disorders, the way we're doing things could be a model. And I've been very much involved in other disease spaces to help them build mitochondrial diseases, Duchenne muscular dystrophy, now myotonic dystrophy, I've been invited to those groups to explain how we've done things in ALS and whether that could be a blueprint for them to develop new therapies for those conditions.

Dr. Daniel Correa:
So with Brian and Sandra's advocacy, the momentum for treatment breakthroughs has catapulted forward. Can you help us all catch up on what new treatments are available to the community now?

Dr. Jinsy Andrews:
When I entered the field in 2005, I only had Riluzole, which was the only medication that was tested, back in the early '90s, actually, and available. And I only had one clinical trial to offer a person who was diagnosed with ALS, and sometimes they're not even eligible for that trial and I had no other options. It was a very limited options and tools at that time. Now, within the last year actually, so Riluzole has still stayed, but within the last year, an oral form of edaravone was approved in May of 2022, which also is supposed to be used in combination with other therapies for ALS. I talked about sodium phenylbutyrate and TURSO, which was approved in September 2022 by the FDA. So within the last year, I went from one therapy to three available therapies for ALS. And granted, they're all modest in their effect because they slow the disease down.
We still are looking for that game changer, that medication that can cure the disease. But each step that we take and a drug comes along and improves standard of care, we get closer to understanding the disease better. We get closer to evaluating better drugs and hopefully getting to that game-changing moment. And that's kind of what has happened in oncology space and also in HIV. You know, those blockbuster things didn't happen on the first go. They came as they learned about the disease and as they tested drugs.
Advocacy has taken a strong seat at the table in terms of incorporating the voice of people living with the disease and their journey in clinical trial design, in interacting with sponsors in interacting directly with the Food and Drug administration or the FDA. And I think in that way, our community, because of the changes and the new approvals, it has created more interest amongst industry sponsors to think about ALS if they have a potential drug to put it in the pipeline. So the pipeline has increased. So no longer do I have one trial to offer, there's likely one person who's newly diagnosed likely has two, three, four options to choose from.

Dr. Daniel Correa:
And I think we both agree and would advocate for people to explore and learn more about potential clinical trial participation because that's the only way any of this moves forward. Where can listeners, community members, people who know someone with ALS, if they want to learn more about participating in clinical trials or even places where there might be opportunities for expanded access to investigational treatments, where should they go?

Dr. Jinsy Andrews:
The traditional database was the clinicaltrials.gov, and that database holds all clinical trials across all diseases, so it becomes overwhelming for people to do the searches. I AM ALS created a database, the ALS dashboard that you can search, actually has clinical trials globally and also expanded access programs. The Northeast ALS Consortium or the NEALS Consortium, it's not Northeast, it was founded in the Northeast, but it's an international clinical trial consortium. But they also have a database and a clinical trials navigator that you can call to help navigate you through the website, NEALS, N-E-A-L-S, .org.
And then there are a lot of ways to either speak to your healthcare provider directly, who can help navigate you to clinical trials or expanded access either at their own center or at other centers. And also working with advocacy organizations locally in your area. The large ones are the ALS Association and also the Muscular Dystrophy Association, but there are a lot of local grassroots organizations that help regionally to help get people where they need to get to.

Dr. Daniel Correa:
Now, one of the other challenges that Brian and Sandra have worked to try to tackle is just the limitation of access to the specialists and the care that's needed within ALS and helping coordinate all the possible services. Most of these centers where you work is based out of a major urban center, or yes, they're large populations, but it can take people hours to even get there. Or as we both know in New York City or based on public transportation, if you're far enough away, even the subway can be quite a challenge, especially for someone with mobility challenges. Where are you seeing telemedicine to address these needs for the community?

Dr. Jinsy Andrews:
I think in ALS telemedicine, everywhere I go, I say this, we need to make sure and lean in into telemedicine services for people living with ALS, even in New York City in the five boroughs, it's not just the traffic, it's not just the bridge and tolls and the subway system and the cost. And then a lot of these places are not accessible when you're physically limited to travel or to get in and out of buildings. And so leveraging that telemedicine capability is important. And I think the pandemic, the COVID pandemic was a difficult time globally, but one of the good things that came out of it is the fact that all healthcare centers really had to figure out how to continue care without the physical interaction. And for ALS, this is very critical and not only for clinical care, because often when people would have disease and it would be very advanced, they would usually call our center and say they can no longer come and they transition to palliative care or hospice and we'd lose touch with them.
And so it provides continuity of care, it provides increased access to care in places that have limited physical space to see limited numbers of people. So I don't have that constraint when I use telemedicine, but also for clinical trials. So when we talk about access to clinical trials, it is a burden for people to travel to very select centers that can participate in clinical trials. So if there was a way to leverage remote visits and remote collection of data and using video visits, that makes it a lot easier for people with physical limitations to participate in a clinical trial. So I think that telemedicine is a means to which we can increase access, improve care, and even make clinical trials more accessible in ALS.

Dr. Daniel Correa:
You know, another part of their advocacy campaign has been helping to reduce the enrollment time for many of the services that are needed for people living with ALS and other neurogenerative conditions. How have you seen that change the care and quality of life for the families you work with?

Dr. Jinsy Andrews:
I think it's one of the things I hear most about when I first see somebody as a consultation visit or initial visit, is how they were kind of in limbo. The referring doctor did some tests, wasn't sure. They noticed that the doctor felt uncomfortable and didn't want to talk anymore, but then they had to wait two or four weeks for that visit. And that two to four week time is short compared to some other centers that have months worth of waiting time. And it's really because there's not that many of us that specialize specifically in ALS. There's only so many ALS specialty centers and so many slots. And the other major factor here is what I alluded to in the beginning, diagnosis is really hard to make.
So sometimes people are undergoing multiple tests, multiple referrals, and ALS is not in the differential. It's not on the radar until very late. And so sometimes people come to me eight months, nine months, or even 12 months after their first symptom, which is a long time to be living with disability. So I think improving that access and shortening that time to the specialty center and specialty care in particular is so critical, not only for physical needs, but also for emotional and psychological needs, not only for the person living with the disease, but also for everyone involved in their care. I always say ALS is one of those diseases, it doesn't just affect the person, it affects everybody around them, their friends, their family, their caregivers. So it's a journey that's taken together as a team.

Dr. Daniel Correa:
Is there something that you feel like you've learned from the community that you work with, that you have taken into your own life?

Dr. Jinsy Andrews:
I don't take anything for granted, and something simple as time. When you go through life and there are challenges and they're relative to everyone, so one challenge might seem big to somebody and might seem small to another, but at the end of the day, time and each day you get is a gift, and to make the most of it, that's what I've learned.

Dr. Daniel Correa:
Thank you for sharing the gift of your time and everything that you're doing, whether it's in front of Congress, working to move clinical trials forward or just day-to-day with your patients and their families to help us all.

Dr. Jinsy Andrews:
Thank you very much. I appreciate you having me here to talk about ALS. The more the merrier in this space.

Dr. Daniel Correa:
Thank you again for joining us today on the Brain & Life podcast. Follow and subscribe to this podcast so you don't miss our weekly episodes. You can also sign up to receive the Brain & Life magazine for free at brainandlife.org and even get the Español version for each episode. You can find out how to connect with our team and our guests along with great resources and our show notes. We love it when we hear your ideas or questions. You can send these in by email to BLpodcast@brainandlife.org and leave us a message at (612) 928-6206. You can also follow the Brain & Life magazine and me on any of your preferred social media channels.
These episodes would not be possible without the Brain & Life podcast team, including Nicole Lussier, our Public Engagement Program Manager, Rachel Coleman, our Public Engagement Coordinator and Twin Cities Sound, our audio editing partner. I'm your host, Dr. Daniel Correa, connecting with you from New York City and online @neurodrcorrea. Most importantly, thanks to our community members that trust us with their health, and everyone living with neurologic conditions. We hope together we can take steps to better brain health and each thrive with our own abilities every day. Before you start the next episode, we would appreciate it if you could give us five stars and leave a review. This helps others find the Brain & Life podcast. See you next week.

The Campaign to Cure ALS with Brian Wallach and Sandra Abrevaya

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