Patti: [00:00:00] This is Sarcoidosis Awareness Month and we're joined by Mary McGowan, who is always very informative about all the things that are taking place in the space.
Mary, could you tell us a little bit more before we begin on all the activities planned this month? What is sarcoidosis?
Mary: Well, Patty, first of all, thank you so much for the opportunity to be here today. Greatly appreciate it. We so value our, our partnership with you and a TS intimately involved in giving out a lot of funding for research and getting a better understanding about sarcoidosis.
And so, again, appreciate the opportunity today, but so honored to be here today because we just launched Sarcoidosis Awareness. Month, which is the month of April. And this is really a, a dedicated time, you know, to bring national attention, Patty to a disease that despite [00:01:00] affecting approximately a hundred and 1.2 million people, worldwide is still not widely understood.
And so we really wanna raise awareness about this during sarcoidosis awareness. Month symptoms as I think, you know, can often mimic other conditions and many patients go years without clear answers. And we refer to it as a disease of diagnosis or a diagnosis of exclusion. And so it's critical that we get more awareness out so that we can shorten the journey of diagnoses for those who sometimes it can be a five year or longer.
Journey for an accurate diagnosis. So that's really what Sarcoidosis Awareness Month is all about. Asking the community to work together, all the stakeholders, patients, caregivers, clinicians, researchers, policy makers to focus on sarcoidosis and to really answer the question of, of how [00:02:00] can we move the field forward in a more coordinated and impactful way.
Patti: Okay, so what are the symptoms different from say, pulmonary sarcoidosis and cardiac? Osis.
Mary: Yeah, so cardiac sarcoidosis, typically the symptoms are, it can begin with a lot of fluttering of your, your heart. Sometimes that goes misdiagnosed as atrial fibrillation as an example. And it's not until again more studies are done or more testing is done that eventually it may lead to a cardiac sarcoidosis awareness for lungs or pulmonary sarcoidosis.
Typically, it starts with either coughing or shortness of breath or extreme fatigue. Definitely more. Signs associated with breathing that is impacted by pulmonary sarcoidosis.
Patti: I was looking at the diagram. It looked like there were lymph nodes at the bottom, bottom of the lungs is what it looks like.[00:03:00]
Mary: Yes. Can look that way, right? Absolutely. And fortunately, the diagnostic, equipment is getting better with pulmonary sarcoidosis. And so, you know, it's estimated Patty, that 90% of people. Are affected with pulmonary sarcoidosis. They may have it in other organs as well as, you know, can impact any organ in the body.
But 90% and some of the clinicians believe the reason why it's so high might be because we are better at diagnosing pulmonary sarcoidosis than, for example, cardiac sarcoidosis. So part of it might be a diagnosis that we are able to see now through these testing mechanisms. Versus other organs that it's not so easily diagnosed cardiac, neuro ssar and so forth.
Patti: And it usually results itself after a few years. Correct.
Mary: It can, some patients it doesn't, it goes on [00:04:00] to continue to unfortunately get worse. So some it resolves for a period of time and then it something can trigger it and it comes back for a period of time. And some, it just completely seems to not be an issue, does not come about again and people go on to live a healthy life.
Patti: Okay. What I found really fascinating was that the Scandinavians and black women in the US between 30 to 50 are most commonly affected by sarcoidosis.
Mary: Yes, you know, the black community is and Scandinavian both are high prevalence of, of sarcoidosis. And we really are doing a lot of awareness around that.
And also some research to try to understand why that might be, that it's impacting some communities more than others. We also see in the black female community that. Not only is [00:05:00] the highest prevalence, but unfortunately they have the worst outcomes. So they have much higher mortality. The women die at a younger age 18 times higher hospitalization rates.
We also see that they are on. Steroids, high doses of steroids for longer periods of time than Caucasian women. So there's really some staggering statistics here which is why the foundation for Sarcoidosis Research is doing so much work in this area through our Ignore No More campaign.
Patti: When we spoke about a year ago, you spoke about champions of Change.
How is that panning out?
Mary: Champions for Change is really fantastic, Patty, I'm so glad you asked that. Well, first of all, the FMLA as you know got clarification from the Department of Labor, which now impacts 60 million. Americans who are now their job is protected if they take time [00:06:00] off from work to enroll in, in any clinical trial for any disease.
We were able to work with the Department of Labor to get that clarification. In addition, it also impacts a family member who may accompany someone on a clinical trial. Their job is also protected, but going onto the Champions for Change, now we are working with companies across America to provide.
Paid time off for employees who enroll in clinical trials. And I'm happy to report Patty, that we now have 60,000 Americans who now are eligible to be paid from their job if they take time off to enroll in clinical trials. So we're continuing to grow that. And hopefully one day all Americans will have paid time off to enroll in really important medical research.
Patti: And this is not just for sarcoidosis, but any clinical research
Mary: That's correct. It's for any medical [00:07:00] research, so as an example, including the leading cause of death of women and men, which is a heart disease as we know. So anybody in America with any medical issue that's entering into a clinical trial.
This now has been changed and we're just very proud of that effort and to be able to have what we should have in corporate America. Because as we know, people are our biggest asset in corporate America. If we don't have healthy people, we don't have a healthy company. And if we don't have healthy companies, Patty, we just don't have a healthy nation.
So this is critically important.
Patti: Okay, so this month tell us about the kaleidoscope that inspires the foundation.
Mary: Yes, we were really excited this year for our theme of c sarcoidosis. And we're just really excited about the, the kaleidoscope theme that we were able [00:08:00] to. Put in place where, so kaleidoscopes of course, have shifting patterns that create a unique image with every turn.
And so the campaign really reflects the complexity of sarcoidosis, like the kaleidoscope as no two cases present in the same way. And symptoms can change over time, right? Often. Affecting multiple organs like we were talking about, and making the disease difficult to see clearly. And so this visual really reflects the challenge, both for patients who are trying to make sense of their symptoms, and for clinicians who may not recognize the disease right away as it can impact multiple organs, like we said, and it reinforces the need to look more closely.
And from multiple perspectives to truly see sarcoidosis. So our major goal of the outcome of this kaleidoscope image and the [00:09:00] whole See Sarcoidosis campaign is to help shorten the path to diagnosis. As we were talking about many patients, they wait for years for answers, and by increasing visibility and understanding.
Even among healthcare providers we can start to, to close that gap. So you'll see that that come, you know, to life through the digital storytelling that we're doing this month for the entire month.
Patti: Okay, so what all is planned for World Sarcoidosis Day, which is the 13th, I believe, correct?
Mary: Yes, it is. We're very excited about world sarcoidosis Day. So again, we'll be putting out some information as we are now about the Kaleidoscope Campaign. See sarcoidosis. We're going to be working with our global partners. Patty, I think, you know, we are an international organization. We have so many clinicians who are regularly [00:10:00] attending all of our CME education for clinicians around the globe.
These doctors are all working together, so we're gonna be working to. Collaborate and get knowledge out to internationally, to these institutions that we are connected with as well as the entire nation to help raise awareness and really get the word out about sarcoidosis. And we're seeing such momentum around sarcoidosis now.
You know, it's funny when I started at FSR about five years ago. It wasn't heard of or it wasn't spoken of at like the American Heart Association. I was there two years ago and there were 20 posters on cardiac sarcoidosis. So it's just an example of how we are building momentum. We're building awareness.
All of this work collaboratively with the entire community and the media is really resulting in greater awareness and, and greater outcomes for patients.
Patti: And you're going to a [00:11:00] Women Rising event in DC coming up and where you hope to elevate this movement.
Mary: Yes, absolutely. Again looking to become much more involved in women international communities and organizations doing extraordinary work for internationally for women.
And so FSR is and we'll be continuing to grow our presence in those communities.
Patti: Okay, so what is Sarcoidosis Caucus?
Mary: Oh, we're so excited about this. This was launched when we were in DC for Rare Disease Week at the end of February. It's really just so exciting to see this congressional a caucus, be launched. We were able to meet with US Congressman Josh Gottheimer and Max Miller, Congressman Max Miller on February 23rd [00:12:00] when they announced this launch of the bipartisan congressional Sarcoidosis Caucus. And you know, unfortunately what's behind this really is Congressman Gottheimer mother.
Died of Sarcoidosis. Gwen was her name in 2018. So really in her honor this congressional caucus was launched and we're so excited to be working with representative Gottheimer office. A couple of things I can share real quickly. One, we're increasing awareness of the FMLA movement and clarification I talked about earlier at this.
State level. So we're gonna ensure that state webpages and governments have this new clarification on their websites. So we're very excited to be working with this office on that. And then also another important thing we're working on is modernizing the definition of rare disease. So, you [00:13:00] know, the definition of course now is 200,000 people.
And less in America is classified as a rare disease. But, you know, this was, this number was really approved for that definition over 40 years ago, Patty, right? And so the population has grown and it doesn't really reflect the population and improving coverage and access for patients today. So we're working with representative Gottheimer office on modernizing that definition.
Which no doubt, again, is going to result in better patient outcomes. So, very excited about this. But overall, the caucus, you know, is a major step forward in bringing this disease into the policy spotlight. And no doubt more Congress, men and women are going to be joining this caucus really helping to build greater momentum on Capitol Hill.
[00:14:00] And this will help again, growing invisibility influence and over time help drive earlier diagnosis, better treatments, and improve quality of life for patients.
Patti: And how can people get involved through FSR?
Mary: Ah, well thank you so much for that question. So first of all, any listeners we encourage you to reach out to your elected officials and encourage them to engage with the caucus.
This would be something that would be very helpful. Congressman Gottheimer is looking for additional representatives, so your voice in that would make a big difference. You can certainly participate in advocacy days and petitions and grassroots campaigns about sarcoidosis and moving policy forward on this would really help to build momentum.
And as a matter of fact, Patty, we are in the process of building creating tools that can be used in this effort. And are gonna be available on our website shortly at stop sarcoidosis.org. So those are a couple of ways from a [00:15:00] policy perspective to get involved.
Patti: How are you collaborating with the American Thoracic Society?
Mary: Oh, American Thoracic Society is such an important partner to the foundation for sarcoidosis research. First of all, we collectively, we both do joint research funding for sarcoidosis. We've given over several hundreds of thousands of dollars in sarcoidosis specific research both of us collaborating together on that effort.
And I am so excited to be on ATSs Health Policy Committee, working with them, that team very closely on addressing policy issues and moving the needle forward from a policy perspective on sarcoidosis and other lung diseases. And then also I'm honored to represent Par the patient group for a TS As a matter of fact, I'll be.
Speaking at their upcoming a TS [00:16:00] conference in Orlando. And very excited about that. And we, there are so many ways that we partner with a TS and again, such an important partner and I, I have to say, I work with a lot of associations and a TS is a real leader in this space, really paying attention to the patient groups, keeping the patient voice at the center of everything that they do.
It's an honor to partner with a TS.
Patti: On this awareness month, is there a call to action that you are relaying to others?
Mary: Thank you for that question. Yeah. So a couple of things that we, we would like to ask is first of all, join champions for Change Your Company. If you're working bring that opportunity to them.
Again, contact your elected official. We definitely want folks to post in purple. So just take a picture of you and your family, [00:17:00] you and your pet. Put something purple in the photo. Post it on social media and highlight and talk about this is Sarcoidosis Awareness month. And you could certainly send them to stop sarcoidosis.org for additional information.
So that's a a, a great way to get involved and to share stories if you're living with. Sarcoidosis it's really about getting your story out there that's so critically important. So again, can be shared on social media or you can send that into info@stopsarcoidosis.org. And we can help share your important stories that are really behind gaining a better understanding about sarcoidosis and really having the opportunity for people to really understand the lived ex.
Experience through those important patient stories.
Patti: You are a wealth of information and love your enthusiasm. Anything else that you would like to add that you [00:18:00] are doing FSR doing?
Mary: Oh, yes. Well, again another way that people can help, we're so excited about our Global Sarcoidosis Clinical Alliance.
This is an initiative we, we launched about three years ago where hospitals and sarcoidosis clinics join FSR and Patty. You know, we, we thought this was gonna be us. Slow moving progression of this membership. And we're up to 50 institutions now globally who are part of this incredible momentum and so much sharing and so much education, both at the patient level and the clinician and research level.
It's really the thing that is really moving. Sarcoidosis forward. As a matter of fact, we're in the process of putting together a national clinician directory. We have a patient directory of, of 7,000 patients from 68 different countries. But the doctors really wanted these institutions. They, they [00:19:00] have their different clinician registries.
They wanted a national registry where all the information is collected, and we are so. Excited to be in the middle of putting that together. So again, anybody listening please you can go to our website and see the members of our Sarcoidosis Clinical Alliance and if your an institution is not a member, that would be so helpful to introduce us to your institution so we can get them on board.
Patti: Listening and watching Mary McGowan, president and CEO of the foundation for sarcoidosis research. Thank you so much.
Mary: Thank you.