For Fotios Koumpouras, MD, FACR, lupus treatment hinges on solving systemic issues of healthcare access, disease destigmatization and a lack of patient-led care. “When you say lupus, there’s a stigma,” said Koumpouras, assistant professor of medicine (rheumatology); and director, Yale Lupus Program. “Physicians used the word lupus to describe a variety of rashes of the face in the 13th century. And one of the rashes was leprosy. So if you had a red rash, people thought you were a leper. And here we are, 500 years later, and there’s still this negative connotation. Lupus is just like rheumatoid arthritis, but the two diseases are perceived differently, so I’m trying to get rid of the stigma and help solve the mystery of lupus.”
Koumpouras also notes that lupus disproportionately affects black and brown communities, coinciding with trends of healthcare inaccessibility and igniting racial bias. “Black and brown patients aren’t really participating in clinical research,” he said. “There’s this racial bias, which now finally is getting some attention, but that’s greatly impacted diseases like lupus, which tends to be more serious in certain groups than others.”
Koumpouras hopes to start a Connecticut lupus registry to create a regional community of people with lupus. “That would lead to a better awareness of the disease and likely increase referrals into treatment programs, which would accelerate discovery,” said Koumpouras.
As director of the Yale Lupus Program, Koumpouras oversees numerous clinical trials. “We now are able to offer patients with lupus access to breakthrough therapies,” he said. “Before, if you had severe lupus, there were very few treatment options, even if you came to Yale. Now at Yale, I have developed a clinical trial portfolio encompassing over 6 different clinical trials. If you have bad lupus and nothing’s working, we can discuss together if a clinical trial is right for you. We also see patients with stable but active lupus who want to explore new treatment options while contributing to lupus research.”
One such study focuses on cannabinoid agonist in lupus pain. “This was the brainchild of a colleague of mine at Hofstra, but we became a key clinical site. This has been a very exciting trial for patients with SLE since there has been great attention paid to the potential medicinal effects of related drugs, such as CBD. We will see if this medication, JBT 101, is an effective therapy for lupus pain while potentially offering greater safety compared to traditional marijuana-related products which may cross the blood-brain barrier. The hope is that this drug gives you pain relief without the psychoactive effects.”
Koumpouras says it was a successful lupus diagnosis in a patient in Brooklyn, NY, during medical school that first sparked his interest in rheumatology, and that same joy following a successful diagnosis continues to inspire him today. “I remember telling the rheumatologist, ‘I think this may be lupus,’” said Koumpouras. “He asked me if I had ever seen a case before, and I said no, this was my first month. He agreed with the diagnosis, and when I came back to see the patient the following Monday, the difference was night and day. 72 hours ago she couldn’t get out of bed, she had serious rashes and blood in her urine. But after the rheumatologist started her on prednisone, she was walking and smiling, and her 3-year-old was able to visit.”
Decades later, Koumpouras continues to see the result of misdiagnoses. “Patients with lupus arthritis may be misdiagnosed and given analgesics and sedatives instead of specific therapy,” said Koumpouras. “So diagnostic accuracy is another thing we really focus on in the program.”
Koumpouras was able to develop the Yale Lupus Program under the mentorship of a leading expert of the immunobiology in lupus, Joseph Craft, MD, Paul B. Beeson Professor of Medicine (Rheumatology) and professor of immunobiology;. “Yale gave me the opportunity to develop the program and work with world-class scientists to find new avenues of therapy and potential treatments,” said Koumpouras. “And that community of scientists, doctors, and investigators had led to and will continue to achieve merits of success in the field of lupus research and clinical therapeutics.”
The Section of Rheumatology, Allergy and Immunology is dedicated to providing care for patients with rheumatic, allergic and immunologic disorders; educating future generations of thought leaders in the field; and conducting research into fundamental questions of autoimmunity and immunology. To learn more about their work, visit Rheumatology, Allergy & Immunology.