Introducing Teresa Barnes, Pulmonary Fibrosis Warrior
You're listening to the ATS breathe easy, the latest podcast brought to you by the American Forests Society.
Speaker 2:Welcome. You're listening to ATS Breathe Easy. Coming up, we will have the latest making headlines for your health. I'm your host, Patty Tripathi, a former CNN news group anchor and considered one of the first Indian American to deliver the news on network television. For some background, and many of you know already, ATS Breathe Easy Podcast has been a staple for nearly a decade.
Speaker 2:We're making some exciting changes, attempting to breathe new life to bring you concise, easy to digest information that impacts health and well-being. Each Tuesday, you'll be able to listen and watch Breathe Easy hosted by four of our regular posts, including three ATS experts. Each Thursday, you'll find a podcast from one of our four ATS scientific journals. So tune in Tuesdays and Thursdays for ATS podcast drops. On the first Tuesday of every month, join me for notable news headlines as I welcome guests who are share the latest in pulmonary critical care and sleep medicine, whether you're a health care professional, researcher, patient, or patient advocate.
Speaker 2:The ATS Breathe Easy Podcast is for you. At the end of each show, we'll also share some important deadlines for ATS events, grants, and awards. Coming up, we'll speak with Teresa Barnes, a self described pulmonary fibrosis warrior. But first, here are some of the latest headlines in pulmonary, critical care, and sleep medicine. Tuberculosis is back in the headlines in The US and around the globe.
Speaker 2:One of the largest outbreaks since the nineteen fifties. The Kansas Department of Health and Environment announced an outbreak of TB with dozens of people infected in the Kansas City area. Sixty seven people are being treated, and another seventy nine with latent tb are being monitored As the largest bilateral tb donor us aid has invested more than $4,700,000,000 to combat tb since February and has reportedly contributed to saving more than seventy nine million lives. Ongoing funding is now uncertain. The ATS recently issued updated clinical practice guidelines for TB treatment in the American Journal of Respiratory and Critical Care Medicine.
Speaker 2:Authors recommend shorter treatment regimens, including a four month regimen for drug susceptible TB and six month regimen for drug resistant TB. And we'll be right back for Heart to Heart with a lung advocate who had lost a number of loved ones to pulmonary fibrosis.
Speaker 3:Hello. I'm Patty Dripathy. I'm so pleased to launch as the host of this podcast with Teresa Barnes. She is self described pulmonary fibrosis warrior and lung research advocate. She worked with the Coalition for Pulmonary Fibrosis and is cofounder of FluidIQ, a public benefit company that has created a tiny three inch ventilator that operates on airflow rather than battery or electric.
Speaker 3:So fascinating. She's joining me today from Saint Louis. Hey, Theresa. How are you?
Speaker 4:Hey, Tati. I'm great. Good to see you. It's good
Speaker 3:to see you too. So we met, what, twenty years ago? Both, lobbying in congress, for a pulmonary fibrosis awareness week. Correct? And tell me a little bit more about your background.
Speaker 3:You've had, at least three, family members who've passed away with complications from, IPF or
Speaker 4:Right. That's, that's true. We we actually lost a total of five people in about a ten year period. So, you know, I was finishing college when my dad was diagnosed with the disease, and ultimately, he was transplanted and did not survive the transplant. And then, about a year, couple years later, one of his transplant surgeons hired me to help him start a medical device company.
Speaker 4:And this first week on the job, I interviewed a PR firm, and they were helping start the first nonprofit for a lung disease they said we're sure you've never heard of. And it turned out that, of course, it was pulmonary fibrosis. And so I helped start the Coalition for Pulmonary Fibrosis because of that. And then and later that organization blended with the Pulmonary Fibrosis Foundation. We lost five people in a ten year period, as I mentioned, and so we joined the genetic research that was happening very early in the genetic research in The US, back in like 02/2001.
Speaker 4:So, you know, I feel like I've grown up at the American Thoracic Society and I'm, you know, I'm really grateful that we have this opportunity to to chat and talk about, you know, what's going on in the space. Have you
Speaker 3:seen a lot of changes, as far as research goes in the last twenty years, or has it moved at snail space?
Speaker 4:You know, I think it's both. One, there's been a significant amount of of a change of of advancement over the last twenty years. Thankfully, there are more people entering the lung space than ever before from a research perspective and a clinical perspective. I think that it's not a lack of having talent and people on the teams nationwide that are that are trying to make a difference and and actually worldwide doing research in the lung. I think there we're we're really limited by, I think, number one, funding.
Speaker 4:There just isn't enough federal funding that goes toward lung research right now. And if you look at, you know, some of the federal budgets, for other organs, you know, lung being, especially during the pandemic, the number one cause of death in the country. And with all of these, you know, you flus and different respiratory viruses that are that are happening today and then other ones that will happen in the future, it's really imperative that we make lungs a priority. And I think that's our biggest challenge. But there are huge strides that we're making.
Speaker 4:Most of the diseases that, you know, we talk about in our community, through the public advisory roundtable, which we're gonna talk about, a lot of those diseases now have therapies. I don't think any of them are are completely curing disease, but certainly giving people better quality of life and in some cases lengthening lives. And in pulmonary fibrosis, that's the case. We do have two FDA approved therapies that do include, improved life expectancy. But it's not improving quality of life.
Speaker 4:And we we can I think across the lung space, we can stand to improve things, I think?
Speaker 3:Is, is a transplant working better now? Is it extending life anymore? I I'm not I'm so sorry about your father. Is is it, working better?
Speaker 4:Well, yes. I mean, I think, you know, we have a lot more experience, and and certainly the more experienced transplant surgeons and transplant centers have in doing, transplants, the better they get at it. There's absolutely no question that that's the case, and I serve on the advisory group for the, scientific registry for transplant recipients, and what we see is the data does appear that lung transplants are getting better, and patients are living longer across the board and they're living better, their better quality of life. But, we still have the age old problem that there just simply aren't enough organs and so, that's a challenge. And then two years ago, there were rule changes regarding the way that lungs were lungs in particular were allocated and the rules, that patients need to meet in order to be transplanted.
Speaker 4:So, I think those are challenges that are ongoing. The life expectancy definitely is better. The volume of transplants is increasing, but not at the level that we'd like for it to be because there just simply aren't enough organs. There's also these, machines that are used nationwide, that rehab the lungs. These what they call perfusion machines that allow them to rehab lungs that were, you know, potential donor lungs, but that were not would normally be discarded that were not, of the right, quality for the physicians to do the transplant with.
Speaker 4:So they're able to use the perfusion machines, rehab those lungs, and transplant them with pretty much the same, outcomes as you would have with an a level lung. So it's it's really exciting what's happening in transplant.
Speaker 3:And and you were also saying that there's some concern because, there is, what you felt the stigma against, pulmonary fibrosis, and that was very interesting. You're saying more than even AIDS.
Speaker 2:Go ahead. Yes. You're right.
Speaker 4:I mean, one, I think it's not just pulmonary fibrosis. It's it's every lung disease. I mean, I think that there definitely there's research that shows that there is stigma and that that stigma impacts quality of life and it also impacts, you know, the fact that patients live longer or not. And so what we're seeing is
Speaker 3:that Does people think they cost it themselves? Or
Speaker 4:Well, yes. I mean, I think that's that's really Patty, that's key. Is that patients, if they're wearing oxygen or if they are known to have you know, they explain that they have a lung disease. I think that most people, just every, you know, anyone on the street would assume that it must be their fault and that they must have caused this and therefore, they're suffering from something they could have, you know, prevented, which is which is not true. Many types of lung disease are are are certainly not under any control of the patients.
Speaker 3:Right. You have a lot of genetic factors you say in your family. My mom was 51 when she was diagnosed, and, she was, you know, the youngest of six kids. Three were, in India and three in The US. They were all, you know, PhDs.
Speaker 3:And, she was the youngest, and and she passed away. And there's you know, and she was a vegetarian, never drank, never smoked. So, I don't know what can be done to raise, greater awareness and what what is being done. What is ATS doing?
Speaker 4:Well, the the great news is that, we've made a lot of strides over the last twenty years in particular. Since I've been doing this, I feel like I've grown up at ATS, grown up looking at, you know, ways that we can increase awareness of the diseases that we, that we talk about and that are, that are important to our patients and certainly important to the ATS clinicians and researchers. But, yeah, there's the the reality is that that there is a stigma and that these lung diseases, the patients are are fighting against, you know, almost a seemingly endless battle. And the way to change that is via awareness, on Capitol Hill, off Capitol Hill. ATS, every year, multiple times a year, there's actually a staff in Washington that's completely focused on awareness activities and all of the activities that lead to advocacy on Capitol Hill, you know, increasing federal dollars, you know, trying to get research funded for any given disease that's important, including, you know, what's been happening in recent years with COVID and other viruses.
Speaker 4:You know, we know that if someone's, virus, you know, they get a secondary infection or the virus itself is extremely severe, the biggest danger is that they will end up in lung failure. And that's a complication that we do have tools to try and help and at least, give people comfort and allow them to to heal if they can. But those are huge limitations that people would be able to overcome.
Speaker 3:Yeah. Did COVID, do anything to advance research?
Speaker 4:It absolutely did. I mean, I think before, you know, 2020, you could ask probably a hundred people, and 75 of them would not really know the difference between pulmonary, respiratory, and the lungs, what the lungs, you know, really do. I mean, people know that they breathe with them, but they don't understand that they're basically your filter to the world. Everything that you breathe in a day, in a lifetime, goes through your lungs, and we don't get new ones, and we can't change them out except for transplant for, you know, a few, but we really, you know, we're stuck with the ones we have, so we need to take care of them. And what we learned during COVID is that the lungs are precious and that they can be easily damaged by some of these viral impacts and our best case is to avoid getting sick in the first place.
Speaker 4:But we do need better therapies to prevent lung failure in all of those cases and we're still working on that. You know, our researchers, our clinicians have been on the front line since day one of the pandemic, and they continue to take care of patients in the ICU worldwide. So I think on Capitol Hill, off Capitol Hill, we can make a huge impact in preventing not preventing pandemics altogether necessarily, but in managing the the viruses that we have just like bird flu, and hoping that we can use what we have to prevent those from being pandemics and major outbreaks.
Speaker 2:Theresa, you've been so involved with ATS in many areas serving on many committees. I'm curious about the public advisory roundtable. Would you, inform us
Speaker 4:on what it does? Sure. The public advisory roundtable is, is is unique in the medical world, really. This you know, the American Thoracic Society proactively twenty years ago or so set up the public advisory roundtable to represent patients and the patient voice in everything that the society does. And so that organization is made up of about 15 patient organizations, and the representatives change every few years.
Speaker 4:But the diseases are represented like, you know, cystic fibrosis and asthma and pulmonary hypertension and COPD and alpha one, pulmonary fibrosis. You if you name the lung disease, chances are their voice is, part of what we do. And every year at the international conference, the ATS, hosts, an event strictly for patients and families so that they can learn about, you know, respiratory diseases, sleep issues, and critical care, and that they could be proactive in their care. And then at many of the sessions at the American Thoracic Society meeting, we actually assign patients to open up those meetings and share their perspective for a few minutes, so that the physicians who are in the audience, you know, not that they're going to forget that their patients are important, but to just remind us every day that the reason we're here is to really, at the end of the day, help patients and make their lives better. And, and that's, you know, why PAR is so wonderful.
Speaker 4:And there really isn't, anything like it, you know, around the world that we're aware of that does what it does. And every member of PAR also serves on one of the committees of the ATS, and there are many of them. So all I can say is, you know, ATS is one of the societies that really believes that the patient voice is critical to literally everything the society does. So I'm I'm really pleased and proud to be part of it. I'm with a nonprofit called warriors, and we're just we just joined this year.
Speaker 2:Although I did chair PAR for five years,
Speaker 4:you know, years ago and I just recently came back on, but it's been the it's been absolutely one of the most important parts of my entire career. So thanks for asking.
Speaker 3:Thank you, Theresa, and thank you so much for, all you're doing. And thank you so much for joining Breathe Easy. I hope to see you on the first Tuesday of next month to share the latest from the ATS.
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