Anne Winkler, MD, discusses her upcoming CCR East presentation, “Targeting Lupus Nephritis.”
Rheumatology Network interviewed Anne Winkler, MD, to discuss her upcoming CCR East presentation, “Targeting Lupus Nephritis.” Winkler is an independent rheumatologist who does outreach work to help provide specialty rheumatology care to more underserved areas, including an affiliation with Mercy Hospital in Carthage, Missouri.
Rheumatology Network: What sparked your interest in focusing on patients with lupus nephritis?
Anne Winkler, MD: We finally have some agents that have been FDA-approved. Even though we have used agents which were not FDA approved, we're finally starting to get some that are effective, not just in lupus specifically, but in lupus nephritis. It’s essentially the number one killer of our lupus patients and certainly the thing we worry most about with our patients. Lupus nephritis is particularly prevalent in young women of color, a very underserved population, and access to health care for them can be difficult for a variety of reasons.
The other thing, not just in lupus nephritis, although what's nice about lupus nephritis is that we have very objective measures we can use to show efficacy, but I think we're also getting a better handle on how to treat lupus and using better measures in clinical trials.
The old measure was the systemic lupus erythematosus (SLE) responder index 4 (SRI-4), which was a very insensitive measure. Now they're using the British Isles Lupus Assessment Group-based Composite Lupus Assessment (BICLA), which puts more focus on the British Isles Lupus Assessment Group (BILAG), allowing us to finally see more agents that are going to be affected. We’re flying by the seat of our pants.
In terms of treatment, we seem to keep throwing options at people. For those of us who have had young patients die, particularly in lupus nephritis but in lupus as well, what's exciting about right now in the world of rheumatology is that we actually have things that show that our standard of care can be improved by some of these additional medicines that are now coming in. We’re on the forefront and we're going to see significantly more agents available for lupus in the next 5 years.
RN: What are some of the unmet needs within this patient population?
AW: Access to healthcare is the issue. A lot of these patients have trouble initially seeing a rheumatologist. They have trouble having their disease recognized. Not every rheumatologist is as attuned to doing the screens and learning guidelines. We’re supposed to screen every 3 months for the first 5 years for high-risk patients. I'm not sure every rheumatologist is as cognizant as they should be. Additionally, I also have patients who have trouble physically getting to the clinic. They're young, they may be trying to work, they may have little kids, it's hard for them to take off to even come to the clinic, etc. Plus, I’m sure you’re aware of the rheumatologist shortage.
One of the good things is that we're moving more and more toward more women in the field of rheumatology. Not that men haven’t done a great job, but I think sometimes women are a little more attuned to those socioeconomic factors that are so important to our young patients, and particularly for those with lupus or lupus nephritis.
There’s also a disconnect between patients showing up in the emergency room, probably having listened to providers, and actually getting them in the office to get started on treatment. The ER is not the place to start treatment. It’s not their area of expertise. However, if you look at some of the data, there's still many patients who aren't on immunosuppressive within 3 and 6 months of biopsy. They should be on treatment 2 days after their biopsy.
RN: I recently spoke with a doctor who specialized in lupus, and he said that even if a patient is symptomatic, even if they have a rash and aches and pains, it can sometimes take his patients to up to 5 years to reach his clinic because it's like a puzzle to diagnosis. A puzzle that can be sometimes fatal.
AW: Lupus is very hard to diagnose. It's one of those things that, if you're experienced, you can see it. When a patient shows up in clinic, we can kind of just walk in the room and have a sense that this person has lupus. Whereas primary caregivers, and it’s not their fault, have very little training in rheumatology. They don't really know the questions to ask. And that makes it difficult.
The other thing is that they will often do an antinuclear antibody (ANA) test, which is 1 very small part of making a lupus diagnosis. They don’t know how to interpret the results. I don't know how many times we see a patient with back pain where somebody did an ANA test on them. An ANA has nothing to do with back pain. These doctors are grappling with something they've had no experience with, no education, and that's not their fault. But it really would be nice if they had some because they might have a better clue about what questions to ask.