Lupus: Giving Voice to a Silent Disease

Lupus patient McSynidy Taylor stands next to a mural in the Bronx. (Photo by Lori Adams)

Lupus: Giving Voice to a Silent Disease

An innovative institute breaks new ground in the fight against lupus

By Christina Bryza

In June 2020, McSynidy Taylor went to the hospital because she couldn’t open a medicine bottle. For months, the 22-year-old Bronx resident had been experiencing inexplicable symptoms: a rash on her face, stiffness and swelling in her hands, persistent constipation, and hair loss that left a bald patch on her scalp. A series of panic attacks and depression followed. Yet it was the height of the COVID-19 pandemic and, like so many others, Ms. Taylor was wary of going to the hospital.

Then came the day she struggled to open that bottle. “I couldn’t do it. I felt paralyzed on my right side, from my arm down to my back,” she says.

Ms. Taylor’s aunt, who is a nurse at Montefiore Einstein, drove her to the emergency room. Within 24 hours, Ms. Taylor was told she had an autoimmune disease. Within two days, she had learned its name: systemic lupus erythematosus (SLE).

“Truthfully speaking, I didn’t know what it was until I was diagnosed,” Ms. Taylor notes. “Nobody really talks about lupus.”

Community-Driven Approach

SLE is often called the “silent disease” or the “silent killer.” It’s one of the most complicated autoimmune diseases to diagnose and can damage almost every part of the body, from the skin to the joints to the organs. It disproportionately affects women of color, particularly those between the ages of 15 and 45. It also has no cure. 

More than 1.5 million people in the United States have the disease, and at least 1,200 of them receive treatment at the new Montefiore Einstein Institute for Lupus Care and Research (ILCR)—the latest evolution in Montefiore Einstein’s long history of pioneering lupus study. The ILCR was established in 2022 to provide state-of-the-art care and serve as an international hub for lupus education and research. Its patients are primarily Bronx residents from historically marginalized groups.

Poverty and social disadvantage are highly linked to lupus outcomes.
— Dr. Tamar Rubinstein

“Poverty and social disadvantage are highly linked to lupus outcomes,” says Tamar Rubinstein, M.D. ’09, M.S., assistant professor of pediatrics and of psychiatry and behavioral sciences at Einstein and a lead researcher at the ILCR. “These social determinants of health are probably highly responsible for the range of disease outcomes that we see, and the disproportionate effects lupus can have on women and men of color.”

Cases of lupus can range from mild to severe—and it’s not clear why, although genes and a person’s environment both play roles. “Lupus does not happen in a vacuum,” says Dr. Rubinstein, who is also a pediatric rheumatologist at the Children’s Hospital at Montefiore. Rather, people with the most-debilitating symptoms tend to be negatively affected by factors such as their economic stability and their access to transportation and healthcare, collectively referred to as “social determinants of health.”

“Two of the important roles the lupus center can play in the Bronx are trying to build deep connections in the community and trying to promote things that would help improve conditions on a larger scale, which would translate into improvements in our patients’ conditions,” says Dr. Rubinstein.

Alumni at the Helm

Drawn to medicine with a social-justice emphasis, Dr. Rubinstein attended medical school at Einstein nearly two decades ago. But she never intended to stay in New York; her family lives closer to Johns Hopkins, where she did her residency. However, as someone deeply committed to advancing lupus research and care, she felt that the best clinical research opportunities were back at Einstein.

“In many ways I just fell in love with rheumatology here,” she says. “What ultimately brought me back were the community and the people.”

One of those people was Noa Schwartz, M.D., M.S. ’08, director of the ILCR, assistant professor of medicine at Einstein, and, perhaps most significantly, Dr. Rubinstein’s peer mentor in their clinical research training program as master’s degree students. They worked together in the lab of Chaim Putterman, M.D., professor of medicine and of microbiology & immunology and former chief of the division of rheumatology at Montefiore Einstein.

“Einstein was always at the forefront of lupus research,” says Dr. Schwartz, who has led the ILCR since its inception. She and Dr. Rubinstein have been the driving force behind the ILCR ever since.

“We’re in an incredible position,” Dr. Schwartz says, “not only to make discoveries and advance our understanding of lupus, but also to holistically support our community of patients.”

Research as a Foundation for Change

The ILCR embraces a bench-to-bedside approach to lupus research and care, with discoveries in the lab informing care in the clinic and vice versa.

“Without the basic-science piece of our lupus research, it’s very hard to do anything else. The lab aspect brings us into a whole field that is huge and fascinating and important,” says Dr. Schwartz. “There are so many things about lupus that we don’t know.”

Those many unknowns include: Why does one person get a rash and another kidney disease? Why do people from racial and ethnic minority groups tend to have more severe symptoms? And what biomarkers or genetic clues, if any, might explain such differences?

Why does one person get a rash and another kidney disease? Why do people from racial and ethnic minority groups tend to have more severe symptoms? And what biomarkers or genetic clues, if any, might explain such differences?

Einstein and Montefiore researchers are focusing on identifying novel cellular mechanisms involved in SLE; finding biomarkers for disease diagnosis, prognosis, and remission; and developing treatments for SLE and its complications. Using gene sequencing to develop individualized treatments, studies will explore how ethnical and cultural diversity affects the biological pathways of the disease, the psychological factors that influence patient outcomes, and educational strategies to increase patient participation in clinical trials. 

“Clinical research has long overlooked people of color, a fact that negatively affects not just those individuals but the public at large,” says Dr. Schwartz. Montefiore Einstein’s patient population draws primarily from the highly diverse, underrepresented communities of the Bronx. As a result, the ILCR is able to bring some of the field’s most groundbreaking and exciting studies to those patients, who, through their participation, enhance the relevance of such studies and their potential benefit for people around the world.”

But of course, enabling pioneering research, like all the other goals of the ILCR, comes at a cost.

A Constellation of Support

“It’s not always easy to wrangle donations for lupus research and clinical care,” says Dr. Rubinstein. “Although lupus is somewhat rare, affecting about 5 million people worldwide, it involves specific pockets of communities and populations. And if you are not in one of those pockets you are less likely to know about the disease, especially because the affected communities don’t typically have the resources to fund research and awareness.” 

The community of patients that the ILCR has created, however, is receiving some much-needed attention.

In particular, a foundational gift from Einstein Trustee Linda Altman is making it possible for the ILCR to bring on its first full-time basic-science researcher devoted to making advances in lupus. Dr. Rubinstein says philanthropy like Ms. Altman’s “speaks volumes about the passion and vision of the center’s leadership and the promise of what this center is going to grow into.”

Though Ms. Altman and her husband, Earle Altman, have helped fund cancer research at Einstein for many years, Ms. Altman didn’t know much about lupus until a family member was diagnosed with the disease. 

“We went to different doctors—rheumatoid doctors and thyroid doctors, endocrinologists. Nobody recognized it,” she says. It wasn’t until she learned about the ILCR and connected with Dr. Schwartz, who provided an immediate diagnosis, that Ms. Altman fully understood the importance of advocacy—and funding—to advance lupus care.

Einstein Trustee Linda Altman and her husband, Earle

“We have to make people more aware,” says Ms. Altman. “This is a dangerous disease, and many people are sick and don’t understand why.” 

Ms. Altman hopes her gift will serve as a North Star for a broader constellation of donors to help the ILCR succeed. Achieving the institute’s immediate goals will require at least $4 million in additional funding.

For now, the ILCR recently hired its first community health worker, who can help patients overcome the most-common hurdles to receiving care, such as prioritizing and getting transportation to medical appointments. Additional plans include expanding an advisory board of patient stakeholders, holding community dinners and education sessions, establishing support groups, and strengthening relationships with referring providers so patients are more likely to get the treatment they need. 

For Ms. Altman, the success of Montefiore Einstein’s incredible doctors and researchers depends in part on those who are willing to fund their efforts.  

“Medical research is an incredible journey,” she says. “We all give for different reasons, but we give. And that is vital.” 

Medical research is an incredible journey. We all give for different reasons, but we give. And that is vital.
— Einstein Trustee Linda Altman

Advocating for Change

Now 25, Ms. Taylor is as close to remission as a person can get when living with an as-yet incurable disease, thanks largely to the collaborative efforts of her comprehensive-care team at Montefiore Einstein. She regularly sees a pulmonologist, a nephrologist, an ophthalmologist, and a rheumatologist, all coordinated through the ILCR. 

Although her own lupus prognosis has dramatically improved, she worries that not everyone has the same access to this much-needed care. “Within the Latino and Black communities, there are not a lot of people advocating for us. And a lot of those health disparities unfortunately affect us,” she says.

But the ILCR and its vision of an inclusive community, paired with comprehensive care, help Ms. Taylor believe things can be different. “I hope anybody who wants to be a part of it, to be an advocate for us, will be able to do that.”

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