One Lupus Warrior's Journey Into Clinical Trials

This July, we're shining a light on one of the most meaningful ways the lupus community can drive treatment forward: participating in lupus research. Follow along as we explore what participation looks like and how you can be part of it. Hear from one lupus warrior who knows firsthand what it takes.

After 10 years of managing her lupus symptoms, Beverly Tinsley Minniefield had to re-learn how to cope with her lupus in 2019 after she lost access to Quinacrine. This upended her lupus treatment plan and forced her to make changes while searching for a new plan that worked for her. For Minniefield, the change in treatments was about more than inconvenience; it resulted in back issues that led to disability.

Losing access to a medication that worked for her prompted Minniefield to consider participating in clinical trial research. Both in search of something new for herself and to help develop new treatments so that others would not go through what she did.

Her friends and family were initially skeptical about her participation in a clinical trial. But after she explained that it was essentially the same as trying out a new medication, they came around.

When Minniefield first started participating in clinical trials, she had several pressing questions.

“The main question that I had was basically about if I was going to get the drug or not,” Minniefield said. “I think that's the question everybody wants to know, but of course you don't know until you're in that trial and if you're seeing differences or not.”

“I also wanted to know about the long term effects and short term effects.”

These are common concerns shared by people who are considering participating in research, and addressing them can help individuals make informed decisions about whether participation is right for them.

Research is an essential part of the approval process for medications used to treat lupus and there are many reasons to be hopeful

“We are extremely excited about what we're seeing in the pipeline,” said Lupus Foundation of America Vice President of Research Joy Buie. “We know that there are a number of phase three trials, which in essence is the last phase before a drug is evaluated by the FDA for approval, that are on the horizon.”

Although Minniefield took part in a clinical study to test a new drug, there are many ways to participate in research.  For example, programs such as Research Accelerated by You (RAY®), a patient-powered lupus registry that collects information about the experiences of people living with the disease, help increase understanding of lupus and support the development of new treatments and clinical trials. There are also surveys, focus groups, and advisory panels that allow people with lupus to offer insight into what it’s like to live with the disease.

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Taking part in research dispelled some misconceptions for Minniefield and helped her make a more informed decision about participation.

“I thought it was going to be this all day process where you go in and they prick you here and there and everywhere,” Minniefield said. “But that was not the case at all. They worked with me with scheduling. They made it easy enough so that if I had something going on, they were willing to work with me.”

When considering whether to participate in a research trial, it’s important to feel heard and supported by your health care team.

“Patients should be at the center of everything we do,” said Global Clinical Program Lead at AstraZeneca, Sule Yavuz. “That means that we don't just design studies based on scientific questions, we also listen carefully to patients, caregivers, advocates, and health care professionals to better understand the real life experience of living with lupus.”

For Minniefield, having a responsive trial team made her feel comfortable and confident throughout the research process.

“If I had any questions, if I had any issues, my trial team was there for me,” Minniefield said. “And that includes at the trial site versus being at home as well. If I had anything come up, they were right there to answer those questions.”

While doctors such as rheumatologists play an integral role in helping treat lupus and can help recommend a clinical trial, people with lupus don’t need a referral in order to participate.

Minniefield also said that having a dedicated team made participating in the trial feel like going to a doctor's appointment. Additionally, participants may be eligible for reimbursement of travel expenses associated with clinical trial participation.

“I would say, ‘go for it,’” Minniefield said. “A clinical trial is not as invasive as you think it may be. Give it a try.”