Welcome to the ATS Breathe Easy, the latest podcast. Here's your host, Patti Tripathi
[00:00:16] Patti: Coming up, sarcoidosis progress being made with this mystery illness. That disproportionately affects black women. We'll hear from the head of the foundation of sarcoidosis research, which is leading the effort to expand access and patient participation in clinical trials. ATS is a partner for this Champions for Change campaign.
But first, here are the headlines. A study out of Australia published in the Annals of the American Thoracic Society found that children. Born moderate to late term, that's 32 to 36 completed weeks [00:01:00] gestation have lower lung function and increased risk of showing asthma symptoms compared with children carry to full term.
Such findings at the end of the first decade of life may signal adverse consequences for respiratory health in adulthood. A new COVID variant that's gaining momentum globally has landed in the us. The World Health Organization says it was monitoring the variant following a rise in cases in several parts of the world, the Health Secretary announces COVID-19 vaccines are no longer recommended for healthy children and pregnant women.
A move immediately questioned by several public health experts. I. An a wearable pulse oxometer that's connected software platform show promise for monitoring obstructive sleep apnea. The device connects to users to an app on their [00:02:00] smartphone, giving patients access to a subset of the same data as their healthcare providers.
Unlike other consumer brands that collect sleep data, the new device is FDA cleared. For medical use, this finding was first reported at the ATS 2025 International Conference.
[00:02:24] non: Did you miss the ATS 2025 International Conference in San Francisco? We've got you covered with the ATS conference. Highlights package.
You can access inspiring presentations as well as valuable clinical insights from pulmonary critical care and sleep sessions. Members get a discount, so become an ATS member or renew your membership. To take advantage of these savings, go to conference.thoracic.org today.
[00:02:51] Patti: Osi. Is a mystery illness and it plate less than 1.5 million people and about [00:03:00] 200,000 people in the US at the last count.
The foundation for sarcoidosis research, also known as F sr made a noteworthy announcement last week at the ATS 2025 International Conference in. Joining us is the FSR President and CEO Mary McOwen. Mary McGowan. You were, are very pleased at, at what's happening right now.
[00:03:31] Mary: Yes, Patty thank you so much for the opportunity to have this conversation today.
Very excited. So when we were at ATS just last week in San Francisco we had the honor of making an announcement. About a partnership actually that we've been involved with, with ATS on a new program called Champions for Change. And basically Champions for Change is an opportunity for companies across [00:04:00] America to provide at least one paid day off to in to their employees to enroll in clinical trials.
And this came as a second part of a initiative that we've been working on to ensure that people's jobs are protected when they enroll in clinical trials. So we had been hearing from patients their concerns about enrolling in clinical trials because their job was not protected. And so we got clarification by the Department of Labor.
We received a six page letter from the DOL indicating now that in fact any employee who enrolls in clinical trials, their job is now protected under the FMLA Family Medical Leave Act, as is a family member who is a caregiver to that [00:05:00] individual enrolling in clinical trials to have time to take off to
be with that individual as a care partner. So it's very exciting news. And again, we've been working very closely with ATS on this. They are a member of the coalition that we have put together to work on this with other 36 other partners. And we're just so excited to have had the opportunity to announce this on clinical trials day that was taking place during the ATS meeting.
[00:05:31] Patti: Thanks to your hard work. This is an illness that I had not heard of and a lot of people haven't. What are the symptoms?
[00:05:45] Mary: Sarcoidosis is an inflammatory disease and it can involve any organ in the body and basically inflammatory cells grow and they can form what is called granulomas. [00:06:00] And if you have enough of these granulomas in different organs of the body, it actually impacts that organ and can shut that organ down.
So as an example, if people have sarcoidosis in their heart, it's called cardiac sarcoidosis. And it can lead to heart failure. You can have it in your eyes. It's called ocular sarcoidosis. You have serious vision problems. But 90% of the people who have sarcoidosis have lung involvement. So it's respiratory and that's called pulmonary sarcoidosis.
[00:06:37] Patti: Do they go on oxygen treatment or could they potentially die? And are they misdiagnosed quite often because the symptoms seem to mimic other.
[00:06:50] Mary: Yes, that's absolutely correct. Patty. Thank you for pointing that out. It is a diagnosis of exclusion. There is a lot of mimicking going on with other [00:07:00] diseases, so doctors have to work diligently to actually get an accurate diagnosis for sarcoidosis.
And that can take several years for some patients. Some patients it's much faster. But it is it is a, a challenge to diagnose. For many patients, and the symptoms really depend on the organ involvement. Many people with cardiac sarcoidosis as an example, they have lettering, and many times it's misdiagnosis as atrial fibrillation.
Sometimes if it's pulmonary sarcoidosis, they may have other things that, that mimic respiratory challenges like COPD or asthma. And so it takes further testing to get to the, the, the sarcoidosis diagnosis.
[00:07:51] Patti: And, and it, is it challenging because there are about 1.2 million and couple hundred thousand people.
I mean, that's good [00:08:00] and bad because Yeah, they don't take notice. 'cause there are other diseases that are, the numbers are quite larger.
[00:08:09] Mary: Correct. And we wanna do an updated study on that. Those numbers are from a couple of decades ago. And so for the listeners just to clarify, a rare disease is for those that have 200,000 and less in America.
So we're really at that border point. And again, that was from several decades ago. So we want to get current numbers to determine this. And the other thing to say about, the, the numbers for sarcoidosis we believe there's going to continue to be an increase in sarcoidosis because it's believed, although it's not completely known what is the cause, but it's believed that it's predisposition.
Uh. As well as environmental triggers. So if we look at what's happening and racial
[00:08:59] Patti: and
[00:08:59] Mary: [00:09:00] racial black women and racial, right, black women what we can talk about that in a moment, but I wanted to say that with the environmental. Impacts that we're seeing across America. The LA fires nine 11, we see a lot of sarcoidosis in the tri New York tri-state area as a result of nine 11.
And so we need to study this more in terms of the environment, but that is a consideration. And yes, Patty, thank you so much for bringing up the, the disparities in the disease. So the African American community has the highest prevalence and the worst outcomes of sarcoidosis, and particularly African American women who are.
Three times as likely to get sarcoidosis, 18 times higher hospitalization rates, and much higher mortality rates, and they die at a younger age. So this is something that FSR has been working very closely on through a national campaign called Ignore No More. [00:10:00] To raise awareness in the African American community as well as the clinician community.
[00:10:34] Patti: And you've been in disease industry since you were 20, you said? Yes. And now in a rare disease. And you're moving the ball forward with 200,000 people that are afflicted. The times that we are in is that [00:11:00] challenging with all these budget cuts and trying to find a cure.
[00:11:04] Mary: Patty. Yes, it is very challenging environment right now. With budget cuts. We are hearing from researchers, clinicians across America about the challenges of now getting re really important research funding to keep the momentum building on sarcoidosis. So the whole community is is really concerned about this.
FSR over the years has given out $7.2 million in sar. How do you raise its
[00:11:37] Patti: money? How do you
[00:11:39] Mary: go about
[00:11:39] Patti: raising
[00:11:39] Mary: money? Must Yeah. That's such an interesting, very creative, interesting question. Yes, it is. It is a little challenging working for a rare disease with raising money. And so some there's very few FDA approved treatments, so there's very few pharmaceutical companies in this space.
So that makes it [00:12:00] challenging. But we do receive money from individuals, from major donors, from some corporations. And but it is challenging. It's funny, I used to be CEO of Women Heart. The National Coalition for Women with Heart Disease was in the cardiovascular space. And of course in that space you have all kinds of pharmaceutical companies.
You have medical device companies. So I find myself working harder. For, let's say a $15,000 grant at, at FSR than I did at Women Heart for a $200,000 grant. Because the money is definitely tighter and you have to be much more creative to raise money in the rare disease space.
[00:12:41] Patti: So what is Global's Sarcoidosis Alliance?
[00:12:46] Mary: Thank you for asking that. This is a, a new initiative, fairly new that we launched about two and a half years ago, and it's so exciting. It has transformed the way the organization is working. We started the Alliance, which is a membership program where [00:13:00] hospitals and institutions across the globe join our organization.
And in turn we have developed. Fabulous clinician programmatic activities where they continue to get education about sarcoidosis. They get CME credits for that education. And and they have an opportunity and to network with everyone. And part of the alliance also has a patient side of it where trained leaders become really advocates in local communities and they establish and run peer led monthly support group.
For those of mis sarcoidosis and doing communications you know, media interviews and sharing their stories at the at the local levels throughout America and throughout the globe and some fundraising. So it's a. Fabulous program. We have about 45 hospitals now that have joined this really exciting initiative in [00:14:00] just the past two and a half years.
And it has really, as I said, really transformed. I think the whole sarcoidosis community build, bringing everybody together under this alliance to work very closely and collaborate as much as possible.
[00:14:14] Patti: We were all at the ATS 2025 conference last week where there major, you know, noteworthy things that I got, got accomplished there.
[00:14:28] Mary: Yes. Yes, they had several sessions that were on sarcoidosis. FSR actually had core posters, but there were many other posters on sarcoidosis bringing research and initiatives up to date for the whole ATS community. So it was very exciting conference, as it always is. And each year we see more and more information on sarcoidosis and,
looking forward to the next ATS [00:15:00] conference where we hopefully will have some updates on a pharmaceutical company who we've been working very closely with now who is in phase three of a clinical trial for pulmonary sarcoidosis. So, very hopeful, very exciting, and we look forward to hearing and learning about those results
[00:15:21] Patti: now.
You know, teach clinicians and, and doctors on symptoms so that people are not misdiagnosed. I.
[00:15:34] Mary: To raise awareness about the symptoms and the disease itself definitely helps. We wanna make sure that doctors have this at the forefront of their thinking when they when they have patients who are expressing some of the signs and symptoms of the multiorgan involvement in sarcoidosis.
So absolutely, we wanna make sure that that's up to date and, you know, for. The early career doctors [00:16:00] sarcoidosis is really an interesting career path because there is little known and because we have so much progress to make for those doctors who really wanna get involved in something where they can really have some incredible breakthroughs and be part of that change, it really offers.
That opportunity for young clinicians. So that's something also that FSR and I know ETS is also involved in to make sure that early career doctors really have that at the forefront too, as they're determining the direction in which they are headed into.
[00:16:36] Patti: Now getting back to what we were talking about earlier did, how did you come to find out that that not having the time off or, or the fear of losing your job was preventing people from going through the clinical trials?
[00:16:55] Mary: So last year we put out an IRB approved survey through a [00:17:00] press release to the entire nation. Asking the black community, those who are living with sarcoidosis to complete a 52 question questionnaire. And our goal was to get 200 responses and we were thrilled to receive 406. And we took a very deep dive into that data with a key opinion leaders thought workshop, and it was discovered that it was the third reason why.
The black community was not enrolling in clinical trials because of the fear of their job loss. And that's when we knew we really wanted to do something about this and started looking into the Family Medical Leave Act. We hired some at attorneys who looked at this and said, no, it's, it's not clear an FMLA, you should ask the, the Department of Labor for clarification to move this forward.
So. We were very excited to get the response from the Department of Labor.
[00:17:58] Patti: Was it a long
[00:17:58] Mary: process? It, it was a [00:18:00] year. We followed up with many Congre 40 congressional visits that ATS was part of with our coalition members all going to congressional offices to talk about this important issue.
And what's really exciting about this, of course, this is for sarcoidosis. All sarcoidosis patients, but it's also for all chronic diseases across America. This is going to be incredibly impactful for all medical research now that you know. Those who can and want to enroll in clinical trials, know that their job is protected.
So we're hearing from many pharmaceutical companies who are thanking us for moving this important initiative forward because they too have been hearing about this on their ends. When they were trying to enroll in clinical trials or even keep people in clinical trials. What were the
[00:18:53] Patti: other two reasons?
[00:18:55] Mary: So the very first reason was patients were not being asked, [00:19:00] they were not having the conversations with their doctors about that. So that's something also that we are working very closely on, is to ask. Clinicians to take the time and it's very very challenging right when you have a, a full medical appointment with limited time.
But it's really important for doctors to have the conversation with their patients about opportunities for clinical trials to in enroll in those trials. So that's something, again, we are talking, we're also talking to patients about that, to bring that question to you, to the pa, to the doctor's office what clinical trials are available, how might I be able to enroll in those clinical trials?
Trust was also a factor. We that the black community identified in the IRB approved survey. And so it's really important to [00:20:00] have patients have trust in their doctors and organizations like the foundation for Sarcoidosis research that they can come to and ask questions and get get good information back for their decision making on their disease.
[00:20:20] Patti: Is there something I missed asking you?
[00:20:23] Mary: Oh, about sarcoidosis or about the organization? Oh, we have lots going on at the organization. I really encourage people to visit our website, stop sarcoidosis.org. We have. A lot of information. We have a lot of education. As a matter of fact, we have our big annual sarcoidosis virtual summit coming up June the end of June, June 28th and June 29th that both clinicians and patients can participate in.
And so that's we usually have about 400 people from around the globe. Who participate in that. So that's very exciting. So [00:21:00] there's a lot going on in in sarcoidosis and we're celebrating our 25th year anniversary this year and in October for those in the Chicago area, or would like to fly to Chicago to be with us.
We're doing our. Research awards, gala and a big in-person Global Sarcoidosis Clinic Alliance, a membership meeting, and a biomarker summit all on October 22nd and 23rd.
[00:21:25] Patti: Okay, lots going on. So Mary McGowan, president and CEO of FSR, thank you so much for making time for us.
[00:21:38] Mary: Thank you, Patti. It was a lovely conversation and very much appreciate the opportunity and we, we will be in touch for sure.
And we're so grateful to ATS for all of the collaborations and for being a part of this Champion for Change new initiative that we announced that a t at. The ATS meeting and so generous of them to give a day [00:22:00] off for each one of their employees enrolling in clinical trials. It's great leadership on behalf of ats.
Thank you.
[00:22:10] non: Thank you for joining us today. To learn more, visit our website@thoracic.org. Find more ats. Breathe easy podcasts. Song Transistor, YouTube, apple podcasts and Spotify. Don't forget to like, comment, and subscribe, so you never miss a show.