[00:00:00] non: You are listening to the ATS Breathe Easy podcast brought to you by the American Thoracic Society.
[00:00:18] Patti: Hello and welcome. I'm your breathe easy host, Patty Pathy. Thank you for watching and listening in. This podcast is about Supplemental Oxygen Reform Act. It affects some one and a half million people living with chronic lung and heart diseases. Joining me today are Jager Sprat and Susan Jacobs. Why don't you kindly introduce yourselves and your involvement?
Jager.
[00:00:44] Jaeger: Everyone, I'm really glad to be on the podcast. Yeah. I'm Jaeger Sprat. I'm the advocacy and treatment access program manager with the Pulmonary Hypertension Association. So I'll be bringing in some of the, the policy perspective on this podcast. [00:01:00]
[00:01:00] Patti: And Susan, you're, you are in charge of 30 patient groups that have signed on and with the ATS correct.
[00:01:10] Susan: So I am a a pulmonary nurse specialist and my current position is at Stanford as a research nurse manager, but I've been involved in patients using oxygen for many years, and I chair the ATS Oxygen Special Interest Group, which we started in 2015. And this is a multidisciplinary group that represents.
As you mentioned, multiple organizations, advocacy and, and professional organizations as well as we have patients, respiratory therapists, nurses and physicians join our group and have worked on oxygen issues for the last 10 years. Thank you. It's a
[00:01:48] Jaeger: really wonderful group. So definitely glad that PHA is able to be counted among them.
[00:01:53] Patti: Yes. Thank you. And Jake, you're kind of this is not the first time, this is the second adoration of [00:02:00] this so act tell me kind of lay of the land where it is right now. It's a bipartisan bill.
[00:02:08] Jaeger: Yeah, that's right. So it was initially introduced. I wanna say in November of 2023. So it only had about a year run in the previous congressional session.
It's now been reintroduced this past August. So it is in both the House and the Senate and it is, like you said, bipartisan. So because there's a Republican majority, there's a Republican original sponsor and then several democratic cos like original co-sponsors that have signed on for both Senate and House versions.
[00:02:41] Patti: And Susan 30 patient groups and I have all of their logos here, have signed on what is at S'S involvement, again, deeper into the question that you had answered earlier.
[00:02:59] Susan: Well, I think it [00:03:00] goes back to the original recognition of oxygen as a huge issue for our patients. And that was in around 2015 in the American Thoracic Society.
We call it a nursing assembly where we saw a dramatic increase in patient complaints, patient calls to the nurses. We were all dealing with this every day. They couldn't get equipment, they couldn't leave the house. They had problems getting callbacks. So at that point. We, there was no data to present, so we actually did a survey and published that in the American Thoracic Society Journal of almost 2000 patients across the us and we documented more than half the patients reporting problems.
In the top four or five included. Equipment that wasn't working, broken equipment, they couldn't travel, they couldn't get what they would consider portable equipment that they could physically manage to get out of the house and couldn't get enough high flow equipment to give them adequate [00:04:00] oxygen. So that really.
HTS played a key role in getting that initial data out. We followed that with a multidisciplinary workshop report where we met with, again, a multidisciplinary group for a day, and developed very formal recommendations for various stakeholder groups and published that as well. So the American Thoracic Society has provided.
What I would call a, a home for oxygen. We identify research gaps, clinical practice guidelines were published, recommending and, and looking at the evidence. So. It, you know, oxygen use crosses multiple patient populations, multiple diseases, inpatients, outpatients, pediatric, adult, cardiac, and, and many different pulmonary diseases.
So the, the American Thoracic Society really provided us a home for advocacy, research, clinical expertih, and it's been very instrumental in, [00:05:00] in bringing this together and working with other professional organizations. Tell me about liquid oxygen. What's happened to that? So I think it's important to know there's three forms of oxygen that we prescribe to patients.
So one is compressed gas, which is what most of us see out and about, maybe in the hospital and even out the green tanks, different sizes, compressed gas in a hard tank, you pull it in a trolley or put it on your back. The second is what we call concentrated oxygen, which draws oxygen out of the ambient air, concentrates it, and you can use a portable oxygen concentrator, which you see advertised as a per size device or a larger stationary one for the home.
That device pulls oxygen out of the air. Concentrates it and it runs on battery. You can plug it in, but it runs on battery. The third type is liquid. So liquid [00:06:00] oxygen is oxygen that has actually been super cooled down to a liquid form, but when it comes out in the air, it turns into a gas. The difference with liquid is you can compress a large amount of oxygen into a smaller space.
So for equal volume, contain. One containing liquid oxygen will last that patient much longer and can run at higher continuous flow. That means the flow is continuous and that patient refills it at a home reservoir. They have a large tank at home and when they go out, they just click on their portable device.
They can turn it on and then they leave the house. So the main difference is liquid provides more oxygen in a portable space so the patient can be out of the house longer. And the most important thing is it can run at higher flow rates and that for a subgroup of our patients nationally, internationally, but they have high [00:07:00] flow needs.
So if a patient. Has low flow needs, that small per size portable concentrator, which goes to about two liters a minute, no more. That may be fine for them, but we have another population of patients that are active out of the house working, caring for families, traveling, et cetera, but need high flow meaning 4, 5, 6, 10, 15, even 20 liters a minute.
That would enable that population as well to get out of the house.
[00:07:30] Jaeger: One other thing to highlight that I hadn't realized about liquid oxygen until a little while working on this issue. But it's also a form that doesn't require electricity to run. Is that right, Susan? Right. So that actually makes it an extremely valuable form of supplemental oxygen to use during, like emergencies or like natural disasters.
So if there's a power outage, people with liquid oxygen can keep using their oxygen for. Potentially a couple [00:08:00] of days versus if you have, you know, an a, a pump that needs to be hooked up to the wall, that's immediately going to be useless once you lose power. So I think especially as, you know, storms get more severe and that becomes a, a more frequent issue.
I think that's another piece that's makes it even more important to get people back to being able to access liquid oxygen.
[00:08:24] Patti: I have my own personal frustration and sadness. My mom actually was on low flow. I don't think she was ever over four, and that's when she was running around. She was very active and didn't use much at home, but she was a very tiny person.
You know, not even, not even five 11 the oxygen tank was so. Huge. And it really made it very difficult for her as like carrying a, you know, scuba gear [00:09:00] with her until the portable oxygen came along. How does this affect this legislation affect all that?
[00:09:06] Susan: Well, liquid oxygen is more costly in, in terms of, it requires the, we call 'em DME, the durable medical equipment company to come out on a weekly basis and refill that big mother reservoir.
So that's a cost to the DME, and it also requires specialized trucks and training because of the management of liquid oxygen and. Over the last 10 years, really since this onset of competitive bidding, which was a change in the way durable medical equipment companies were reimbursed by Medicare, which lowered their reimbursement because of the cost of liquid.
It was the first service that was really eliminated in order to, to, for them to maintain, you know, financial health of their, of their, of the DME. [00:10:00] So the cost of paying a driver once a week to go out and manage these and the equipment their reimbursement cuts from Medicare, you know, it didn't allow that.
So that was the first thing that we lost. So we saw, I mean, we saw an 80% drop in the number of patients using liquid oxygen from about 2010 to 2016 or 17. So it's very cost effective for A GME to have like a home fill unit or, and they just, patients fill their own compressed gas and that GME doesn't have to go to that home every week, so it's a cost savings.
They also lost the ability to have a respiratory therapist on their staff. You know, we just saw a lot. That's where we saw this huge increase in patient dissatisfaction. After that, they would call. No one answering the phone. Deliveries were either delayed or, you know, not. Not enough deliveries, so liquid oxygen.
Really took the biggest hit in terms of [00:11:00] that financial hit and our patients needing high flow. They were the most dramatically impacted, so they lost access to liquid.
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[00:11:38] Patti: just to give an example, under Medicare Part B, a person may have various out-of-pocket costs for oxygen therapy in 2025 was an annual deductible of. $257 after a person meets that there are some many layers of expenses. Must pay 20% [00:12:00] co-insurance, the rental costs, the portable oxygen concentration.
And then after making those monthly payments for 36 months, these payments cover maintenance, accessories and repairs. The lifetime of this, uh. All this equipment is five years. I mean, what happens then? So they have a,
[00:12:23] Susan: So they would start over again basically. So the first, like you mentioned, and, and Jager you can add into this.
For the first three years they're under contract with Medicare. They pay 20% of their deductible or their, their fees. But the DME manages that equipment. But then that last two years, um. They stop that payment, but they still have the equipment and supposedly the DME company is still servicing and taking care of it, which often doesn't happen, but that's the agreement.
And at the end of that five year cycle, they would start over [00:13:00] again. One of the big issues with that setup, if a patient signs on with A DME and they're in it six months, let's say, and their oxygen needs go up, and now they need more etanks or higher flow concentrator, which. Doesn't really exist or liquid.
They can't change DMEs at that point 'cause that DME has already had that patient for up to a year and they would lose the rest of that contract. So it's very hard for patients to change their company once they start. That's another negative. And I don't know, Jager, if you have other comments there.
[00:13:36] Jaeger: Yeah, I mean, so from what I've heard from patients who've contacted PHA it just makes it super difficult, like you said, to change those contracts. And so the, basically the DMEs are getting reimbursed. At not a terribly high rate, but they are getting reimbursed for those first three years. And then those last two years, because it, it's still a five-year contract, those [00:14:00] last two years, the companies are basically supplying it for free.
So you can imagine that's gonna make that customer service. Just really tank. And you can definitely, you can see that and the Google reviews for national oxygen supplier companies, they're really poorly rated. So it just kind of has a cascading effect that negatively affects patients and leads to equipment not getting checked up on not getting maintained well.
As far as the, like, the lifespan of the equipment itself, I don't know that, um. I don't, I'm, I'm not familiar with like necessarily a requirement to replace the equipment every five years, but I think it's more that contract then is, is kind of when people potentially have the chance to change, especially if their oxygen needs have changed or just to do anything else.
But it's, it's a struggle to make it all the way through to the end of that five years because of the lack of [00:15:00] adequate reimbursement.
[00:15:01] Patti: So where are we now? There are how many Republicans congressmen that are supporting this and and is it. Yeah.
[00:15:15] Jaeger: So in on the Senate side right now we don't have any additional co-sponsors as of yet.
So there's the one Republican who has introduced it, which is Senator Bill Cassidy from Louisiana. And then the co-sponsors are Senator Mark Warner from Virginia and Senator Amy Klobuchar from I believe Wisconsin. And then on the house side, I believe we are now up to 18 co-sponsors. Last I checked.
So that one is trending a little bit more democratic right now. I mean, I will say with other things going on in Congress, the Republicans have their hands quite full. So, you know, perhaps over the summer we can kind of get that balance back in order. But it, it is still [00:16:00] certainly a bipartisan issue and, you know, shouldn't necessarily be divided down party lines at all.
[00:16:09] Patti: So what can people do if you are affected or you're a loved one, physician medical care provider, neighbor we you are imploring that they contact their congressman or senators to Yeah,
[00:16:24] Jaeger: absolutely. I, I think really anybody, literally anybody who has ever had experience. With supplemental oxygen, whether that's your own experience, whether that's a loved one's past experience, and especially if you are a medical provider who has patients who need some kind of supp supplemental oxygen.
Um. All, all of these stories are very, very valuable to bring to your members of Congress. The, the most impactful way to to get policy change to happen is for constituents of an office to talk to their [00:17:00] elected official. You know, we as patient advocate organizations certainly can go up to Capitol Hill and do often to advocate for it, but having a constituent of that office come to.
That legislator or more realistically their staff and share those personal stories that's what gets policy change made. So anyone who has those experiences if you're. Unfamiliar with the process of advocacy. It, it truly is not as hard as it seems although it can seem intimidating. But just starting out by reaching out to an association that you're already connected with and asking about their advocacy work is a great way to get started.
PHA has an advocacy action center on our website that's very accessible, and I'm happy to have that link shared in the show notes. And there's. As, as we've talked about, you know, over 30 other organizations and many of those [00:18:00] organizations have really robust advocacy programs as well. So there's just truly a plethora of resources out there to help anybody who's interested in sharing their story, to make sure that they get heard
[00:18:13] Patti: and very compelling are the stories, and you will be bringing.
Patient stories coming up in the second part of this podcast, correct?
[00:18:25] Jaeger: Absolutely. Yeah. So this is a two-parter. So I'll be coming back with some really wonderful people who both are patients and require high flow oxygen and are very impressive advocates themselves. So I hope listeners will be able to enjoy their stories and.
I feel a little bit inspired to take on this issue as well. It's, it's definitely a big group effort.
[00:18:50] Patti: Susan. Is there anything else you'd like to add that I didn't ask you?
[00:18:55] Susan: Well, it's, it's, it's been such a long time issue. We really are [00:19:00] anxious to improve the quality of services for our patients. It's not just about liquid.
That is a huge piece because our patients end up isolated, unable to leave the house. Many of these high flow patients are preparing for a lung transplant and they're required to undergo pulmonary rehabilitation, which is exercise. Of course, we want all of our patients exercising. We have patients now that leave the house.
Under oxygenated, so they're hypoxemic. And that can be very serious with medical complications for patients, especially who need oxygen at rest, can create what we call right heart failure, pulmonary hypertension, so access to high flow to keep those patients out of the house active able to. You know, travel, go to religious services.
Many are, some, we have populations with young women that have, are caring for small children and trying to get, you know, or others caring for older family members. And then the [00:20:00] quality of care. Losing a respiratory therapist in these DMEs was a significant loss to us. You know, we would call, we need to ask questions about flow rates and equipment combinations.
And it's difficult now because it's really not a professional there. The other advantage was that we could have our patients tested on the equipment they were going to be provided with, and we wanna know that that equipment me keeps them oxygenated over a certain amount. And we don't know that Now.
We, we, we test them in our clinic, on our equipment. But we don't know what they're gonna actually be given. So loss of the respiratory therapist was another, um. Big issue. You know, I think the education piece is also huge. You know, patients, our survey showed that 70% of patients are trained by the truck driver dropping it off, and that's if they're lucky they're there.
So there's lack of education and that means the patients are less likely to adhere to what we're prescribing for them. So. [00:21:00] Patients won't use the equipment. If they don't understand that it's broken, they don't understand maybe there's another option. You know, unless you're asking for for respiratory Yes.
That, for that educational component or. This Thor Act also includes a Bill of Rights and one, you know, one of those Bill of rights is that that patient will be trained and the family, how to use the equipment, how to maintain the equipment that should be a standard of care and that doesn't happen.
Which, and safety, you know, it
[00:21:32] Jaeger: is a safety concern. Yeah. I, one, one of the patients that I'll be talking with on the the upcoming episode has had that exact experience of. Really, really benefiting from the respiratory therapist back when she had first started on oxygen and she credits that respiratory therapist with, you know, making sure that she actually adheres to the prescription.
'cause you know, she was like a young 30 something working mom. And understandably felt. [00:22:00] Really self-conscious about wearing oxygen out in public. So, you know, if, if someone just gets those, that equipment dropped off at their home with no great instructions on how to use it, you know, certainly.
Eventually when they meet with their doctor, the, you know, the doctor can talk to them about the importance of adhering to it. But having that process of being in the home, getting walked through how to use the equipment and the why of why it's important is, is something that patients really do need and, and are currently missing out on.
But that, that is one component of the SOAR Act that would actually make sure that the, those services are reimbursed. And so that would make it. Financially feasible for, for DMEs to be employing respiratory therapists again.
[00:22:48] Patti: Okay. And what is your call to action?
Yeah, h, support the SOAR Act.
[00:22:54] Jaeger: Get in touch with your representatives. They're they. Like I mentioned, [00:23:00] the PHAs Advocacy Action Center. We have a pre-written message template. So it's super easy. Just a couple clicks, just a few minutes, and you can send a letter to your members of Congress. We do have a little box in there for you to customize and include your own experiences.
Um. Then, you know, for anyone who has the time and the willingness to do more you can make calls to your office. We have also a call script there within the action center as well. And then even reaching out to either PHA or other. Patient advocacy organizations and setting up meetings with your legislators in particular that can go a really, really long way.
If you can make that personal connection with members of, of your legislator staff. And those are super easy to do too. You can do them on Zoom, you can do them from home. Um. We're, we're more than happy to set you up with all the talking points. You don't need to know the details of the policy. Just being there and sharing your personal experience [00:24:00] is gonna be the most powerful advocacy tool in your tool belt.
[00:24:03] Patti: And know, obviously you're hoping that it passes by 2026 in this. Yes,
[00:24:08] Jaeger: that is absolutely the goal. Yes, we ideally would love to not have to reintroduce this bill again in 2027.
[00:24:17] Susan: And I would like to put out that same call to action with an emphasis on our medical professional world. We need the data. It's been very hard to get that data and especially around patients.
For example, now we have patients who are unable to leave the hospital because they do not have high flow oxygen at home. And this, we are trying to get data. And we know that this happens in especially transplant centers where we have sometimes we have some responses already that three to four patients at any one time are in a hospital for up to two to four weeks extra only because they can't get adequate high flow oxygen to be discharged.
They're medically stable, but [00:25:00] they can't get enough oxygen high flow to be discharged home. So we really need the data on those kinds of things. Any, you know, medical admissions, er, admissions around issues around oxygen to really document the impact of this problem across lots of populations. So I would ask.
And also writing editorials op-eds. So we call on medical professionals to really, um. Help us get this passed and provide that information
[00:25:31] Patti: in the process. Well, I hope to have you back when we are saying that we, the store act, um. As you want it passed. And for now, thank you so much Jaker and Susan, it's lovely to have you.
Thank you.
[00:25:51] Jaeger: Thanks for, thanks for having me on. Appreciate it.
[00:25:57] non: Thank you for joining us today. To learn more, [00:26:00] visit our website@thoracic.org. Find more ATS Breathe Easy Podcasts on transistor, YouTube, apple podcasts and Spotify. Don't forget to like. Comment and subscribe, so you never miss a show.