It’s no secret that the COVID-19 pandemic significantly changed the way we interact with the world around us: in our social lives, the way we work, the way we communicate, and even the way we pursue healthcare. But what are some of the longer-term impacts of these alterations? Now nearly three years into the pandemic, we are beginning to find answers to this question.

In November 2022, GSK released survey results from rheumatologists, nephrologists, and internal medicine specialists exploring how healthcare professionals worked to address and prevent organ damage in patients with systemic lupus erythematosus (SLE, or lupus). The survey sought to explore professional approaches to lupus management, as well as to understand the impact of the COVID-19 pandemic on patient care and outcomes.

Recently, Patient Worthy sat down with Dr. Rajeev Raghavan, MD, FASN to discuss what lupus is, results from the survey and their implications for patient care, why doctors should be having earlier conversations about organ damage with patients, and advice for those living with lupus.

About Dr. Raghavan

Dr. Rajeev Raghavan is a medical doctor who trained at the Baylor College of Medicine before joining HCA Health as the Program Director for the Internal Medicine Residency Program. He is a board-certified internist and nephrologist and has been working in an academic setting since he finished training. He explains:

“A nephrologist is a kidney specialist, so I’m very interested in topics relating to kidney disease and glomeruli diseases. In addition to teaching and academics, I see lots of patients with conditions like lupus in my clinical role.”

Dr. Raghavan places a huge importance on his relationship with patients and tries to center that within his work. He shares:

“I’d feel empty if I didn’t have patients calling and asking me questions, or patients that I can call and say happy birthday or ask how they’re doing. From the ICU and dialysis units to my office, I get to see and help people across a spectrum. And they’re always going to be my patient, which I love. I love building these relationships.”

What is Lupus?

An estimated 200,000 people within the United States are living with lupus, an autoimmune disease. As Dr. Raghavan explains:

“Autoimmune means that the body creates antibodies against other parts of the body. So, in this case, the immune system creates antibodies that attack organs and tissue. Lupus can affect multiple organs, such as the heart, lungs, joints, skin, and kidneys. About 50% of people with lupus will have kidney involvement. For example, Selena Gomez has lupus and had to undergo a kidney transplant.”

Lupus is significantly more common in females than males, with around 90% of cases occurring in females. It is also more common in those between ages 20-30, and in people of Hispanic, Asian-American, or African American descent.

Lupus is a variable condition in symptoms, severity, and speed of onset. Some people may only experience symptoms during episodes while others feel symptoms more consistently. These symptoms can (but do not always) include:

• A butterfly-shaped rash on the center of the face
• Fatigue
• Fever
• Anemia (low red blood cell count)
• Hair loss
• Skin lesions that worsen with sun exposure
• Joint pain
• Headache
• Shortness of breath
• Chest pain
• Mouth ulcers
• Raynaud’s phenomenon
• Dry eyes
• Memory loss and/or confusion
• Organ inflammation and damage
• Heightened risk of bone tissue death, infection, and cancer

Treatment options vary but can include biologics, rituximab, corticosteroids, and non-steroidal anti-inflammatory drugs (NSAIDs). Shares Dr. Raghavan:

“Steroids are very broad immunosuppressive agents and can affect many different cell types. While they can, in some cases, be effective, side effects can include cataracts, bone disease, and skin disease. Immunomodulators have more side effects than immunosuppressants and biologics.”

Unpacking the Survey Results

As Dr. Raghavan explained, lupus is a multi-system disease which can impact and damage different organs in the body. It is important to understand the impact of organ damage. For example, organ damage is a key determinant of a poor long-term lupus prognosis. Therefore, it is crucial for patients and their doctors to monitor organ health and to ensure timely appointments. Delays in care can lead to immense health issues.

Dr. Raghavan shares that:

“This survey sourced insights from 648 healthcare providers across seven different countries and discussed attitudes and care practices related to lupus, and lupus nephritis in particular. Given that many patients experience organ damage within five years of their diagnosis, early management is critical. The survey also asked how patients were handled during the COVID-19 pandemic. Unsurprisingly, and due to delays in care, 27% of surveyed providers reported that patients experienced more flares, which is a risk factor for organ damage. As a nephrologist, I have seen patients whose flares affect their kidneys and cause irreversible damage.”

Why was this? One reason that Dr. Raghavan names is that many people with lupus are on immunosuppressant medicine. As a result, people find it more challenging to visit their physician out of fear of getting sick. Unfortunately, this can have a lot of long-term implications. 65% of HCPs also shared that they typically wait more than one year after diagnosis before discussing the potential of organ damage with their patients, and 46% responded that they only discuss organ damage once it happens. Dr. Raghavan advocates for earlier discussion, sharing:

“That was a sobering statistic to read. Patients need to understand up-front that they have a serious disease. I think conversations about organ damage need to happen earlier. In my clinic, I have a lot of posters and clinical material in the rooms so when patients come in the first time, we’re talking about what CAN happen with lupus if there are flares. I think it’s important even from the time that the diagnosis is made to educate them and to tell them the importance of diet, lifestyle, and medication.”

Join us in Part 2 as we discuss the importance of preventative care. Dr. Raghavan will also offer advice to patients on how to optimize their care.