Lupus In America survey data

Survey Finds People With Lupus Frustrated By Current Treatment Plans, Lack of Treatment Options

– More than six in 10 respondents said they were currently using hydroxychloroquine –

PHILADELPHIAJune 4, 2020 — A new survey from Health Union highlights the frustrations people living with lupus often feel about treatments, including the perception of limited options and limited improvements to both physical health and quality of life. The inaugural Lupus In America survey illuminates the perspectives and experiences of people impacted by lupus.

The findings also support the launch of Lupus.net, Health Union’s 27th condition-specific online health community.

Lupus is an autoimmune condition that can lead to inflammation and pain throughout the body, including skin, joints and internal organs. One-fifth of survey respondents said they consider their lupus to be severe, while 63% consider theirs to be moderate and 17% consider theirs to be mild.

Just 16% of respondents feel their lupus is controlled on their current treatment plan. Unsurprisingly, only 16% are currently in remission, while half of respondents said they have never experienced remission. Additionally, only 42% feel confident they’re doing everything necessary to manage their lupus on a regular basis.

In terms of common treatments, 93% said they were currently using an antimalarial or immunosuppressant, six in 10 were using over-the-counter pain medications and 35% were using an anticoagulant. Although not reflected in the survey, which fielded before much of the impact from the coronavirus pandemic was felt, access to some treatments has become an issue. Specifically, news reports have depicted occasional difficulties in accessing hydroxychloroquine, an antimalarial that 62% of respondents said they were currently using.

More than six in 10 respondents said they feel frustrated there aren’t more treatment options for lupus. Lupus.net patient advocate Marisa Zeppieri-Caruana echoed this sentiment, saying she and her fellow lupus patients have often felt “somewhat ignored” in terms of treatment options. However, with the recent development of treatments specifically for people with lupus, she said she is hopeful.

“We still have a long way to go, as these formulations must undergo FDA approval and trials, which is not a quick process,” Zeppieri-Caruana said. “Lupus has been overshadowed, and we have suffered in silence and have not ‘been seen’ for long enough. But we are hopeful for what the future may bring in terms of treatment.”

Perhaps related to the lack of options, respondents tend to be interested in information about treatments. Nearly two-thirds cited lupus medications and treatments as a topic they are interested in, while one-third are also interested in information about clinical trials and scientific research. Additionally, more than half of respondents said they would be interested in participating in future lupus clinical trials.

“Lupus.net gives people living with the condition the opportunity to find the information they need, from treatment perspectives to mental health and coping, in the moments they need them,” said Tim Armand, co-founder and president of Health Union. “From there, they can connect with people who might share their experiences and become both more informed and empowered to take their health into their own hands.”

The inaugural Lupus In America survey, fielded from Jan. 1 to Feb. 25, 2020, includes responses from 589 people diagnosed with lupus. A summary infographic of the results is available on Lupus.net; additional survey results may be available upon request.

About Health Union

Since 2010, Health Union has encouraged social interactions that evolve into valuable online health conversations, helping people with chronic conditions find the information, connection, and validation they seek. The company creates condition-specific online communities – publishing original, daily content and continuously cultivating social conversation – to support, educate and connect millions of people with challenging, chronic health concerns. Today, the Health Union family of brands includes 28 online health communities, including LungCancer.net, ParkinsonsDisease.net, MultipleSclerosis.net and Migraine.com.