Reducing Disparities in the Delivery of Healthcare to Patients with Lupus: A Q&A with Sam Lim, MD, Consortium Chair of the Lupus Initiative

You mentioned the Lupus Initiative is directed at primary care physicians who are on the front line of treating patients with lupus. Can you describe the role that they play and why it’s important for them to get this extra level of education?
What makes a systemic autoimmune disease like lupus so challenging to assess and treat is that because the immune system is everywhere‑‑top to bottom, outside, inside‑‑you are presented with such amazing diversity of symptoms, and these symptoms overlap or they’re very nonspecific with other conditions. So the initial manifestations of lupus can look like so many different things, including a common cold, flu, or allergic reaction. That is why it’s expected that people would go first to their primary care physician and they would be evaluated for these common conditions. But it’s also exactly for that reason why people can bounce back and forth from different doctors for several years before they get diagnosed with lupus.
That’s why it’s so important for primary care physicians to be aware of the disease, to have it in their differential, to think about it because that’s really the first step in all of this. Once it’s on their radar, we hope that they will learn some key treatment decisions to therefore maximize the best outcome for these patients.
Do the Lupus Initiative educational programs focus on the role of the primary care doctor in treatment once the diagnosis is made?
Yes. The curriculum discusses important treatment-related issues for which primary care physicians will be primarily responsible. For example, there is a high rate of cardiovascular disease in lupus‑‑that’s a point that is made time and time again in the curriculum. What really accelerates mortality for people with lupus who survive after the first few years (which is most of them), is accelerated cardiovascular disease. And that is an issue that’s going to be best dealt with as a team, but primarily headed up by the primary care physician. It really comes down to the basics of cardiovascular disease prophylaxis: cholesterol, metabolic syndrome control, controlling smoking, diabetes, etc. These are very common comorbidities in lupus and often the rheumatologists are so busy on the primary issue of the immune system problems, that the secondary issues that really loom the largest long-term can get overlooked. That’s why it’s important for the primary care partners to be on board.
What impact does undiagnosed or under-treated lupus have on patients’ quality of life?
Some of the more common symptoms of lupus, whether it’s diagnosed or undiagnosed, include significant fatigue, joint pain, and those types of issues. Although lupus can affect almost anyone of any age of any gender, the primary demographic that is affected is young women of childbearing age in their 20s to 40s, and particularly women of color. You’re talking about a very special group of patients that are in the prime of their life in terms of careers, job opportunities, and family.
In this country, access to healthcare and health insurance is heavily based upon employment status. So you can see how lupus, which is associated with profound fatigue and pain, can have a serious impact on patients’ ability to work and keep a job. If you lose your job or you’re under employed, and therefore underinsured, it can severely limit access to treatment.
The symptoms of lupus can make a profound impact on employment and insurability, which ties in with equally important issues of quality of life, self-management, and self-efficacy. If you combine them all together it can have devastating impacts on people despite what appears to be on the surface relatively benign symptoms of chronic pain and fatigue. It really does build up in this vulnerable population to be something very profound.

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