Ryan Haumschild, PharmD, MS, MBA: We’ve talked about the clinical burden, we’ve talked about the difficulty in terms of managing and diagnosing these patients, but how do these diseases impact patients with ILD [interstitial lung disease] in terms of their morbidity and mortality? When we think of interstitial lung disease, I know from my perspective, when I’m managing cost and covered lives, we also think about patient quality of life. That’s something else that employers are concerned about within this patient population. I don’t know if you could talk to us a little about how does this disease impact morbidity and mortality and lastly, what is the impact you see it make on patients’ quality of life?

Kristin Highland, MD: Interstitial lung disease is frequently progressive, and it’s the leading cause of morbidity and mortality in scleroderma. It’s the second leading cause of death in rheumatoid arthritis. IPF [idiopathic pulmonary fibrosis] is relentlessly progressive, with patients having an average survival of 3 to 5 years. They get on the internet, Dr Google, and the first thing they read is the mortality associated with IPF, no matter what kind of interstitial lung disease they have. So they come to us anxious, scared, depressed, but they’re also short of breath. Often they don’t even know how short of breath they are because the body often naturally, subconsciously, slows down. Often patients show up to my office because they’ve gone on vacation and they’ve done something out of the ordinary, and they all of a sudden discovered how limited they are. With time, they’re able to do less and less. They become deconditioned. That decreases their ability to be independent. As Dr Noble stated, patients desaturate, and so now they have to wear supplemental oxygen. They can no longer hide their disease. Wearing oxygen affects their vanity. It’s very difficult to maneuver these oxygen tanks. Payers do not want to pay for portable concentrators, and so patients are tied to their house. They don’t have the flexibility to leave their house without bringing multiple tanks, and many of our patients are quite frail. The burden of having to wear oxygen is very real and needs to be solved.

In addition, patients often have a nonproductive cough, which can be quite debilitating, quite embarrassing, patients are afraid to leave the home because people think they have some kind of infection, especially during the COVID-19 pandemic. People are afraid that they’re going to be accused of having COVID-19 and spreading the virus just because they have this unrelenting cough. I think we should not underestimate the effect of interstitial lung disease on the caregiver. Not only is the patient burdened by their disease, but the caregiver has a significant amount of issues with lost work, with anxiety and depression over this illness as well. There is a huge clinical burden with the diagnosis of interstitial lung disease.

Ryan Haumschild, PharmD, MS, MBA: I appreciate that overview because you know these patients better than anybody. I think there is a lot of societal concern when patients don’t feel like they can leave the house, whether that be based on their pulmonary function or other people are going to think they have COVID-19, and I think those are things we need to be more aware of. It’s interesting too because as patients have this, and you mentioned depression and some of these comorbidities that are associated with the disease, it tends to impact treatment. What I mean by that is there’s also the economic burden, [and] as you eloquently put it, the clinical burden. When we look at the economic burden, I think that’s also something that comes to the top when we’re looking at interstitial lung disease. Speaking from that payer management side, we always look at the medical costs that are associated with this disease. I think as Dr Noble and Dr Culver spoke about, if we don’t have early diagnosis, these patients have high utilization of seeking out practitioners’ primary care. However, they don’t really see disease control until they get in front of that pulmonologist, get the proper diagnosis, and then proper control, either therapeutically or medically. I think that’s one of the biggest things that we look at as the annual medical costs continue to increase. I think as you start to look at more data around progressing patients, where I think the future of data is coming out, you see even higher medical expenses.

When you look at some of these claims, you can see it typically run about $15,000 higher per year in medical expense for payers if these patients aren’t being managed appropriately. I think that pulls into a lot of what we’re hearing about, having that right specialist manage the patient means less ED [emergency department] utilization, less outpatient utilization, and better quality of life. When we look at some of these health care utilizations and some of the related costs, we see that cost increase over time. They can increase over time because patients may not have great adherence to therapies, they may not feel like their condition is controlled, or they may have other disease manifestations that occur in terms of being a rheumatological patient, but also being managed by their pulmonary [physician], and how often are those providers really communicating in more of the community setting? I think that’s what payers are looking for too. How do we manage that? How do we get in front of that so that we have better large-scale management of these patients, more timely management, and therefore not duplicating some of the services that are provided?

Before we move on, I just want to hit on a few last comments around the economic burden because I think it’s such an important consideration as payers are managing these diseases, making sure patients get access to these right medications in the upfront setting. I know we sometimes use a lot of step therapies and go through those prior authorizations, which are important, but we know that patients who have comorbid disease, whether it be COPD [chronic obstructive pulmonary disease], pulmonary hypertension, whatever you want to talk about, you see higher ILD-related treatment costs along with those other disease-related expenses. I think that’s something also really important; patients don’t usually just have 1 disease on their own. They can have depression, they can have anxiety based on their pulmonary function, and that leads into other treatments and management that the payer has to consider.

As we look at lastly, real-world data, there are a couple of articles published in Advances in Therapy that showed a correlation between an increased frequency of pulmonology visits and an increased frequency of utilization. When they actually saw the specialist, you saw the utilization of provider visits go down a little, but you had longer management of disease. I think [it is important for] patients to truly understand the benefit of staying compliant with their treatment and also being checked on whenever some of these manifestations occur, or if another provider’s looking to change therapies, to also reduce any drug-drug interactions. With that being said, I feel like that’s really the economic burden, it’s the care of the patient, but also the management of comorbidities, especially when a lot of patients present with both.

Lastly, I want to hit on one more main takeaway before we move on to the rest of our discussion. It’s creating the awareness of interstitial lung disease among payers, health plans, and employer groups because at the end of the day a lot of these employers are the ones that are paying the insurance companies to manage their benefit. What we’ve realized is there’s not a lot of awareness in terms of interstitial lung disease. There’s a lot of awareness of how we manage medical expense, but as you mentioned, Dr Highland, there’s a lot in terms of quality of life. If you have patients working for you who are actively working, if they have interstitial lung disease, there’s a high chance that they could have high absenteeism.

We’ve actually seen that, in the Annals of American Thoracic Society, that some of these patients with more progressive interstitial lung disease, about 50% of them have said that they’ve missed work directly related to their disease. This is related to they weren’t having a great day or they felt like they weren’t being managed and couldn’t perform the function, which leads to higher absenteeism. When I think about that and we think about this as integrated delivery networks, we know right now staffing is one of the most difficult things for us to manage. We have a lot of expenses across our different health systems and provider clinics, but if we can get in front of having better presenteeism, reduce absenteeism by better management of disease, and having that pulmonary or lung doctor managing the total treatment, I think that’s going to improve quality of life for the patient and the caregiver. At the end of the day, it’s going to save these employer groups when you’re looking at filling those shifts or coming up with better staffing plans.

Kristin Highland, MD: I’d like to add that management of these patients includes not just drugs, but also includes oxygen and having the availability of portable concentrators, but also access to pulmonary rehabilitation, and often repeat courses of pulmonary rehabilitation, because that can improve exercise tolerance, quality of life, independence of the patient, and less reliance on the caregiver. As we think about treating our patients comprehensively, thinking about these ancillary ways to improve the quality of life of our patients and improve their functionality, it’s important to consider in addition to the medications.

Daniel Culver, DO: I’d like to chime in too, Kristin, one more point to that. The thing we never want to have to do, but we do have to in this specialty, is also deal with the severe patient and the patient who’s going to die from their interstitial lung disease, and perhaps the patient who’s not a candidate for lung transplantation. A very important part of what we do is manage those patients with palliative medicine, with hospice. My goal for patients with advanced interstitial lung disease is to keep them out of the hospital. I think one of the worst ways to die with interstitial lung disease is in the hospital on a ventilator. That’s the right thing to do for the patient, but it’s also economically a prudent thing to do, to support patients as they approach the end of their life and the end of their journey in ILD with a way to keep them at home, to keep them comfortable, and to focus on quality of life rather than repeated emergency department visits, admissions to the ICU [intensive care unit] and LTAC [long-term acute care], and all of the other things that come from that.

This transcript has been edited for clarity.