Who Identifies and Manages Progressive Chronic Fibrosing ILD?


Neil B. Minkoff, MD: What’s your experience clinically in terms of who is being diagnosed in the rheumatology and the pulmonary department? How did those breakdowns happen, and how do you communicate if that makes a difference in terms of how payers are responding to your requests?

Sonye Danoff, MD, PhD: When I give talks I show this slide of an elephant with a blind person touching different parts of it. As a pulmonologist, I see something different from what a rheumatologist sees, or maybe a cardiologist sees if they had a patient present with pulmonary hypertension. A big part of the challenge is making sure we communicate with one another. Rather than seeing just the single part of that disease, we recognize it’s the whole nature of the disease. Fortunately I’m blessed to be at an institution where I spend my time on Friday afternoons in clinic with rheumatology and neurology side by side. When we see patients, we see them often together. This is a luxury that I don’t think everybody has the opportunity to enjoy. In the absence of being able to grab your rheumatology colleagues and drag them in the room with you and say, “Hey, what do you think about this finding that I have on my new ILD [interstitial lung disease] patient?”

It’s key that there are open lines of communication where the pulmonologist, the rheumatologist, or whoever is seeing them first is communicating with the patient. The patient is their own best advocate and often is the person who carries the information to specialists. Patients should know what they have. Why we think they have that. What they’re testing is. I usually have my patients get a little binder and carry their lab studies with them. And then have them communicate with the primary care provider, who hopefully is serving as the hub of care for the patient, making sure all the specialists are coordinated. Last but not least, for patients with autoimmune lung disease, I try to communicate directly with the rheumatologist because our therapeutic decision-making has to be joint therapeutic decision-making. It’s easier if we’re talking to each other than if we’re just launching out in our own direction on how we’re taking care of the patients. I’m sure Laura has a slightly different view because she sees patients through the rheumatology lens. What would your view of that be?

Laura Hummers, MD: I totally agree. Communication is key. In rheumatology we’re in the position where we’re screening a lot of times for lung disease. Hopefully before it’s happened or before it’s progressed. Then we get our pulmonary colleagues involved when it does. The treatment is so important to be a shared decision-making process.

In the rheumatic diseases in particular, because you the pulmonologist may not be aware that their joint disease is active or they’ve got new muscle inflammation that requires therapy. Or their skin disease is active from their scleroderma. There are medications that potentially could be used for both or 1 could impact the other. It has to be a shared decision-making process.

Neil B. Minkoff, MD: When you’re requesting medications, are there some the payers are saying have to be prescribed from a pulmonologist?

Laura Hummers, MD: I have not had that experience yet because I see mostly scleroderma patients and nintedanib has been approved for only a short period of time. I’ve had the opportunity to prescribe it for only a handful of patients so far. I have not had an issue where they said it has to be coming from a pulmonologist, but maybe I need to gain more experience with more payers, and then I might run into that issue.

Neil B. Minkoff, MD: Dr Oldham, do you have anything to add to this discussion on the coding and the breakdown between pulmonologists and rheumatologists when looking for treatment paradigms?

Justin Michael Oldham, MD, MS: Yes. It is very much a team sport. But before we can talk to one another, we have to acknowledge that a patient coming in with ILD might have autoimmune disease, or a patient coming in with autoimmune disease may have ILD. I like to joke with my rheumatologist that they’re pretty good amateur pulmonologists. I’m a pretty good amateur rheumatologist myself. You know, that’s required to work well together because they have to suspect ILD when they’re seeing autoimmune disease, and I have to suspect autoimmune disease when I’m seeing ILD.

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