July 14, 2022

Embracing Life with Lupus: Understanding Gaps and Accelerating Opportunities to Advance the Health of Women with Lupus

By Monica Lefton, Communications Manager.

Fatigue, hair loss, skin rashes, sensitivity to the sun, swollen and painful joints, and kidney problems could all be symptoms of lupus, but with no single diagnostic test, it can take patients months or even years to receive a proper diagnosis and find treatment. Women account for 90% of the 1.5 million Americans living with some form of lupus, with those ages 15 to 44 most likely to develop the disease.

In an effort to better understand the impact of this immune-mediated  disease on women’s health, wellness, and livelihoods—both as patients and caregivers— the Society for Women’s Health Research (SWHR) convened an interdisciplinary working group of clinicians, researchers, patients and patient advocates, and policy leaders for a roundtable discussion on June 1, 2022. During the conversation, participants discussed gaps in lupus diagnosis and treatment, wellness routines for living with lupus, and the role of policy in improving the lives of women with lupus.

Understanding Lupus

Lupus is a chronic immune-mediated inflammatory disease (IMID) where the body attacks its own tissues, creating widespread inflammation and symptoms, often resulting in organ tissue damage – most commonly in the joints, skin, brain, heart, lungs, kidneys, and blood vessels. Systemic lupus erythematosus (SLE) is the most common type of lupus, affecting multiple parts of the body, whereas cutaneous lupus erythematosus (CLE) primarily affects the skin. Lupus disproportionately affects women, and notably, women of color: Black women are 3 times more likely to develop the disease than white women, and Black and Latina women are reported to develop symptoms at younger ages and have more severe symptoms and complications from lupus. Lupus has also been found to be more common in Asian and Native American populations. Risk can also be genetic, and some studies have shown the weathering of health, such as stress in childhood or prevalence of anxiety, PTSD, and depression, is associated with lupus development.

Although the exact cause of lupus remains unknown and is likely dependent on several factors, given that it is an IMID, there are a series of triggers that, when matched with the “right” genetic background, can lead to abnormal immune response and disease development, Irene Blanco, MD, MS, professor in the Department of Medicine at the Albert Einstein College of Medicine explained.

Working group members agreed that once a lupus diagnosis is made, life changes forever.

Getting to a Diagnosis

Due to the varied symptoms associated with lupus, which often mimic other diseases, a majority of individuals with lupus are initially misdiagnosed. On average, it can take up to 6 years and seeing 4 to 5 different health care specialists before receiving an accurate lupus diagnosis.

Part of this delay falls to a lack of physician education about lupus, working group members stressed. Many people with lupus are ultimately diagnosed by a rheumatologist, a doctor who treats inflammatory disorders that affect muscles, joints, and bones as well as connective tissue diseases. While lupus diagnoses regularly happen in a rheumatologist’s office, asking about symptoms and identifying lupus should not rest solely on one’s time in a rheumatology office.

“We need to normalize physicians recognizing and discussing lupus symptoms with their patients because patients may not be comfortable bringing it up on their own,” Dr. Blanco said.

Additionally, basic rheumatology and lupus signs must be taught in medical school classrooms. “There’s a general lack of rheumatology education for all physicians and health providers. Most medical schools do not have a course on rheumatology, and most training programs do not have rotations on it,” Dr. Blanco added. She recommends schools make a separate rheumatology test section, which will prompt professors to include it in the curriculum. This could help all physicians–including those who may see populations with a higher risk of lupus, namely women’s primary care physicians, OB/GYNs, pediatricians, and endocrinologists—be prepared to discuss the possibility of lupus with their patients.

While doctor’s appointments can feel too short, individuals should always come prepared with notes to guide the appointment towards their greatest needs. Ayanna C. Dookie, stand-up comedian, writer, host of the HydroxychloroQUEENZ podcast, and lupus patient advocate, recommends asking for more time with your doctor, when able, to go over additional questions or concerns. Juana Mata, lupus patient, health care advocate, and co-founder of Looms for Lupus, agreed, urging patients to communicate with providers during the bad times and good, and to always follow up on test results that seem abnormal.

“Juana is alive because she refused to leave [after a short urgent care appointment]. She is the CEO of her body,” Mata’s sister Maria Estela Mata-Carcamo, president at Looms for Lupus, added. “Ask all the questions you have, and don’t leave if you know there is something really wrong with you. The doctors don’t always have the time to ask everything, but even the smallest concern that you share may be the biggest indicator to look for something else.”

A timely diagnosis is key to mitigating disease progression. The diagnostic delay associated with lupus can lead to accumulated organ damage, said Emily Somers, PhD, ScM, associate professor at University of Michigan.

Treatment of Lupus and Care Considerations

Individuals may be afraid or confused after a lupus diagnosis, so a patient-centric approach is crucial for care. This approach should include minimizing the use of medical jargon; setting regular check-ins; ensuring a shared understanding of the disease and treatment plan; setting expectations for the future; and having individuals involved in the management of their own care through shared decision-making.

Since there is currently no cure for lupus, available treatments focus on reducing symptom flares and pain. Because symptoms can vary from person-to-person, treatments need to be tailored to the patient’s unique needs. “When you have lupus, you become your own health advocate,” said Mata-Carcamo. “What you need to know is unique to you, so we often recommend each patient make their own medical chart and keep a file of their medications and vitals for reference.”

Lupus also puts women at greater risk for developing other autoimmune diseases or other chronic conditions, such as heart disease and osteoporosis. Women with SLE may also experience complications resulting from kidney inflammation and damage, a condition known as lupus nephritis, and some studies have shown women with lupus exhibit a higher risk of several . Women with lupus should have frequent cancer screenings to track their risks of certain cancers, particularly if they are on immunosuppressive medications

There are also important considerations related to lupus and pregnancy. Although women with lupus can safely become pregnant when the disease is quiescent and they are on the least teratogenic medications, many women with lupus face challenges. Twenty percent of pregnant women with lupus develop preeclampsia, and the risk for additional complications during pregnancy increases in women with kidney disease, uncontrolled blood pressure, and diabetes. This makes the early identification and proper treatment of lupus in women all the more crucial.

Living with Lupus

Daily life with lupus can vary depending on the timing and severity of flares. Many people with lupus struggle with mental health issues, so finding behavioral health treatment can be important.

When Dookie thinks back to what she wishes people had told her before and at the time of her diagnosis, mental health is at the top of the list. She recommends most people a therapist, because depression with a chronic illness can be difficult to manage and extra stress left unmanaged can be bad for your health.

The workplace may contribute added stress for those living with lupus. Dookie shared that during her time with a previous employer, her colleagues and boss were insensitive to her situation. This was her first indicator of how life was going to be with an invisible disease, a sentiment echoed by other patients and patient advocates. Creating workplace accommodations for individuals living with lupus can have positive effects on productivity and feelings of inclusion, Dookie noted.

There is a real lack of knowledge and misunderstanding when it comes to lupus and autoimmune diseases, shared Dr. Somers. Integrating disease awareness into the workplaces and other venues can be worthwhile for caregivers and patients, she recommended.

Lupus caregivers also face challenges, which impact their socialization, stress levels, and work; lupus caregivers miss 12.8% of paid work time and exhibit a 30% reduction of on-the-job productivity, Dr. Somers shared.

Caregiving, for all conditions, is hard work, and sometimes the work of finding the right caregiver also falls on the patient. Some people are not built to be caregivers, and people living with lupus have to let those people go, Dookie shared.

Improving Policy and Access to Care  

Improving research, care, and policy for women with lupus begins with understanding where the gaps lie. Three major barriers are access to a specialized workforce; high out-of-pocket costs; and siloed care systems, Amanda Grimm Wiegrefe, MScHSRA, Director of Regulatory Affairs at American College of Rheumatology said. The breaking down of siloed care would have lasting effects on clinicians, people with lupus, and their communities, working group members agreed. This begins with increased physician education and continues with awareness of federally available lupus research and care programs, like the National Lupus Patient Registry and the Lupus Research Program.

Providers must also be equipped to advocate for high-quality care and coverage for their patients and actively combat the existing health disparities that many living with lupus may experience. Lupus is a chronic disease with a wide range of symptoms, so living with little or no insurance coverage can be life-threatening to patients. For many years, health insurance coverage didn’t affect Dookie, but when she became a stand-up comic with lupus and started to live under the poverty level, she saw just how dangerous it is to be poor, especially with an illness. Studies show that poverty or low socioeconomic status is associated with poorer outcomes of SLE.

Policy solutions are needed to ensure care is accessible and that research into lupus, including diagnostic mechanisms and treatment options for women are prioritized. Addressing gaps in research, clinical, and health care policy, as well as disparities in diagnosis and treatment, would significantly improve the burden on women living with lupus, roundtable members agreed.

Closing the Loop for Lupus

The top recurring theme throughout the roundtable was the need for more awareness around this invisible illness, whether in casual conversations between friends, in doctor’s visits, or at the workplace between employers and their staff. A key piece of this awareness, patient advocates emphasized, will be increased access to lupus resources that are shared across doctor’s offices and readily available for women and their families.

Truly improving the lives of those with lupus, though, will take a multi-faceted approach: researchers must study treatment options and targeting pathway therapeutics; physicians must educate themselves on lupus and be prepared to reduce diagnostic delays; policymakers must push for improved funding and programs aimed at lupus care, working alongside patient advocates; and women living with lupus should feel empowered to share their stories, advocate for their own health care, and challenge their employers, communities, and clinicians to join them in recognizing this invisible illness.

SWHR will continue searching for opportunities to build awareness, advance science-based policies that expand access to coverage, and advocate for improved outcomes for women living with lupus. SWHR hosted a public forum on June 15, Closing the Loop for Lupus in Women’s Health Care, and will publish a toolkit this fall, sharing tips for people living with lupus.


SWHR’s Lupus Program is supported by educational sponsorship from Eli Lilly & Company and Aurinia Pharmaceuticals. SWHR maintains editorial control and independence over educational content.