In this podcast, Misha Rosenbach, MD, discusses how the COVID-19 pandemic has affected patients with sarcoidosis.
Listen to the first part of our interview with Dr Rosenbach here. He talks about the diagnosis and treatment of sarcoidosis.
Dr Rosenbach is the director of the Cutaneous Sarcoidosis & Granulomatous Disease Clinic, and associate professor of Dermatology at the University of Pennsylvania, Perelman School of Medicine.
Melissa: Welcome back. We are back with Dr Rosenbach, Director of the Cutaneous Sarcoidosis & Granulomatous Disease Clinic at Perelman School of Medicine, to discuss the impact of the COVID‑19 pandemic on patients with sarcoidosis. In part one, you touched a lot on this. How has the pandemic affected treatment of sarcoidosis patients?
Dr Misha Rosenbach: Listen, this year is terrible. There is people listening, no one should not acknowledge this. 2020 is a challenging year. In terms of pushing the envelope, since that’s what we were just talking about, there’s been a lot of delays in clinical trials.
If you’re looking at starting a trial in the middle of a pandemic, it’s harder to do visits. You’re going to have more complications. People are stressed. No one’s going to want to sign up for something if they don’t know how it works. That’s hard.
You have to balance, should I put someone on an immunosuppressive drug when there’s a global pandemic? I will pause and say, the one treatment that there’s good level of evidence for COVID right now is steroids. Steroids are the mainstay of treatment for pulmonary sarcoid.
Steroids in COVID have been studied in patients who are sick and in hospital, often, either on oxygen or moving in the direction to maybe end up in ICU. There’s not data on if you put someone on steroids and they’re walking around, does that prevent COVID?
That’s not anything that anyone’s proposing or has been suggested. The question is, if you put people on these medicines or you have people on these medicines, is that going to put them at higher risk of getting SARS‑CoV‑2 and developing COVID or is that going to reduce the level of inflammation should they happen to get it?
No one knows the answers to these questions. At the beginning of the pandemic, there was a lot of concern that patients on immunosuppression would do a lot worse.
There are small studies out of New York, and in the rheumatology literature, and some psoriasis populations that don’t seem to have that signal of, “I have patients who are on immunosuppression versus patients with the same disease that are not on immunosuppressant drugs. The immunosuppressed patient’s doing worse.”
That hasn’t emerged, surprisingly. The easiest thing to say is that the first treatment for cutaneous sarcoid, I said, creams and injections. Then, either tetracycline‑class antibiotics or antimalarial therapy, so hydroxychloroquine‑Plaquenil. If you read anything, the first‑line agent for skin sarcoid is hydroxychloroquine‑Plaquenil.
There is a very overblown, very small report out of France from someone who doesn’t have a strong background in high‑quality research advocating use of that agent as a treatment for COVID or prevention for COVID. That was picked up on by some media and some prominent politicians who have Twitter accounts and magnified without sufficient evidence to back those claims. That was really tragic. What it meant was that patients with autoimmune disease who needed hydroxychloroquine, Plaquenil, were unable to get it. There was shortage.
There was like a run on these pills. It became very tightly regulated where pharmacies would only give out a 30‑day supply. A lot of patients are used to getting 90‑day mail order supply. There was a lot of treatment interruptions. A lot of patients were unable to start hydroxychloroquine, Plaquenil.
That is basically just now getting better, six or seven months into the pandemic. That was frustrating. That’s one way it’s impacted things. Also, sarcoid patients, 90% have lung disease. In the US predominantly affects African American patients.
COVID has had some disproportional impacts on this sort of populations, particularly African Americans or the Hispanic populations, which seem to, for probably a variety of reasons but also some historic issues touching on the whole broad topic of social determinants of health. Those populations have been disproportionately affected by the COVID pandemic.
You take someone with sarcoidosis who is, in the US, typically going to be an African American patient. Sarcoidosis typically involves the lungs. Those patients often require immunosuppression, that’s a set up for disproportionate impacts from COVID also.
This pandemic sucks for everyone. This year has been terrible. There’s a lot of downstream consequences with a lot of different things. Yes, it’s definitely touched on the health of sarcoidosis patients.
Melissa: Has telemedicine at all been helpful for managing sarcoidosis? Is it one of those diseases where they have to come in?
Dr Rosenbach: Telemedicine in general is long overdue. There are some diseases that lend themselves really nicely to telemedicine. Sarcoidosis, it’s a very heterogeneous disease. Someone with very bad lung sarcoid, they might really need to have their lungs listened to or they might need to come in and walk around the room and see what their O2 sat is.
Certainly, they’re going to, a couple times a year, maybe need some imaging, chest X‑ray, or CAT scan, or pulmonary function test. All of those things are quite hard to do remotely. From a skin standpoint, with sarcoid patients, often you can see it right there on the surface.
Once they’ve had their first biopsy, you’re pretty much not going to necessarily need to biopsy them again. A lot of times, we’re managing their medications, medication side effects, and maybe blood tests if they’re necessary.
For me, it’s been very easy to transition many sarcoidosis patients to teledermatology care. There are some who are getting regular injections. You can’t do intralesional injections over teledermatology.
A lot of patients who are being managed on immunosuppressive medicines, you’re mostly talking to them about their drug side effects, seeing if their disease is active, controlled, quiescent, or flaring and running through their blood test results and making sure that those all line up.
Someone with moderate to severe sarcoidosis who’s on methotrexate, if their skin still looks well controlled, and you review their blood tests, and you talk to them about their side effects, the discussion is, are things perfect and we should be slowly tapering your medicine or are things active and we should be slowly ramping up your medicine?
Honestly, for all of that, you can do that pretty easily over the virtual visits. That’s worked well. I will say, we did touch on disparities a little bit. Not everyone has the same WiFi. Not everyone has the same smartphone or webcam. Not everyone is comfortable broadcasting from their house to other people.
Some people have multiple kids in school or are challenged with access to finding time for these things. You would like the use of telemedicine to broaden access because it makes it easier for people to get in touch with the right doctor. In some cases, that’s definitely happened.
Right at the beginning when we made the first transition to telehealth in April or so, one of the things that was very quickly noticed is that wealthy patients were able to make it work a lot faster and easier than patients who have financial challenges. That could broaden disparities again. It’s important to keep that in mind.
On the plus side, I’ve gotten to see patients much farther away than I normally would be able to. I had a visit with someone who lives four hours away in central‑western Pennsylvania yesterday who otherwise I’m not sure they would have been able to get out and see me.
In theory, it would be great if we had national licensing and you could do teledermatology care across the country. If there was some severe skin sarcoid patient in Louisiana, that’s someone who probably never would ever be able to get up here but might be able to be managed over telederm. There’s potential to make it better but pluses and minuses as with everything.
Melissa: Is there any registries or any studies looking at COVID and sarcoidosis?
Dr Rosenbach: The American Academy of Dermatology has a great COVID registry that’s run by Dr Esther Friedman at Mass General through the AAD. It’s been a great collaborative effort, multi‑center, international contributions, over a thousand patients had data put in there.
That’s helped our understanding of potential skin observations that have occurred during this pandemic period, whether they’re tightly associated or questionably associated, there are still some questions about how to sort all that out.
From a sarcoid standpoint, there are many initial efforts to try to create collaborative efforts. Some of them have succeeded in taking off. The question is, are you allowing patients to submit their own data or requiring physicians to submit their data?
At University of Pennsylvania, we have a pulmonologist who’s looking at our single‑institution data. Yes, there are efforts. I’m not sure there’s been a publication or data presented from any of those efforts yet.
Melissa: Thank you again for listening to this podcast. If you have any other questions or comments you would like to ask Dr Rosenbach or you enjoyed this podcast and want to see more sarcoidosis content, please submit your feedback in the feedback box below. We really appreciate anything you send us.