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Rheumatology Breakout Session

The Rheumatology Breakout Session kicked off with Anna Legassie, advocate and board member of the Autoimmune Association, Christine Von Raesfeld, Patient Advocate and CEO of People with Empathy, and Marisa Zeppieri, author and founder of Lupus Chick who came together to share some of what they have learned as rheumatology patients.

Part two of the of the Rheumatology Breakout Session included physicians’ assistant Wendy Simmons, and Kelly Owens, a patient with experience in clinical trials and the director of the Feinstein Institutes for Medical Research. Together they talked about clinical trials in rheumatology.

Recorded October 2021 at the Autoimmune Community Summit.

Part One

Condition Management

Patients can best understand how their conditions affect their life by closely monitoring their lifestyle and symptoms. This thoughtful recording of lived health experiences is called “Health Journaling”.

Marisa, a journalist, is a big proponent of health journaling. “When I started health journaling, I literally got a notebook from the dollar store and started writing down EVERYTHING – what I ate, drank, medications, supplements, time spent in the sun, stressors (physical or emotional), sleeping, napping, (menses). These were things my physicians never told me to look out for.”

“Looking back on your journals and data over time,” Marisa added, “you can see really clear patterns – okay, when I eat this, or when I’m in the sun, the next few days I have these symptoms.”

Finding the Right PCP

Since autoimmune patients have so many providers, treatments and symptoms to juggle, Anna found value in finding the right primary care physician. Anna sees 8 different specialists to get all the care she needs. “I see my PCP twice a year and she quarterbacks sooo much of this for me, and, she knows me as a whole person.”

Medical Gaslighting and Agency in Healthcare

Medical gaslighting is the phenomenon where a person with medical authority leaves a patient doubting his or her own judgment, or sanity. Gaslighting strips patients of their agency in healthcare and results in worry and doubt. Evidence of gaslighting can be found when reviewed one’s health record.

Modern access to medical records has occasionally revealed vast differences between the perceptions of patient and physician. Anna gave an example of how her GI doctor recorded her as having irritable bowel syndrome even though that diagnosis was never discussed in consultation. “If I had never checked those clinic notes,” added Anna, “and seen what she charted from our encounter, I would have missed it completely and lost another several months before realizing we weren’t on the same page.”

Christine also experienced errors in her medical records too. For example, she was presumptively listed as a Caucasian, when she is, in fact, half Asian. Such errors might have prevented access to clinical trials or treatment options.

“I hear people say that they don’t want to complain, because they don’t want to be labeled a problem. They might not get good care. But that’s a lie. Be proactive in your own care.”

Controlling the Conversation

It’s easy for a visit with a doctor to go differently that hoped. Marisa proposed health journaling and writing down questions as a solution. A consult “might spiral into three or four other things, and then you leave and realize you didn’t discuss those two other things that were really important. I usually let providers know up front that I want to go over certain things with them.”

She also noted that it’s important to remain respectful and positive, because toxic communication can damage the doctor-patient relationship. Nonetheless, patients should ask questions and expect answers.

Know How to Explain Your Experiences

Since doctor and patient are part of a team investigating solutions to health problems, Christine brought up the importance of learning how to explain your symptoms.

Consider the process of applying for disability as an example of the value of being specific and accurate in your descriptions. “What is this person able to do on a daily basis?” mused Marisa. “Saying I’m tired is very vague, but if you say I had to call out from work three times this week, I was unable to cook dinner for my children, and I slept an average of fourteen hours over the last four days, these are really specific.”

Another way to ensure you are not being misheard or diverted from your concerns is to utilize messaging in your patient portal. This creates a ‘paper trail’, giving you the ability to phrase your symptoms or concerns in your own words.

Part Two

Clinical Trial 101

Clinical trials are divided up into four phases.

Phase I – Evaluation of safety and correct doses, done in healthy people.
Phase II – Evaluation of effectiveness within the target population in different doses.
Phase III – Comparison with existing therapies or placebo, and evaluation of safety and effectiveness profile. Application for FDA approval happens here.
Phase IV – Post-FDA-approval. Investigate side effects, long term safety and effectiveness, and other uses of the approved therapy.

Some Current Trials

StopRA: A clinical trial for adults before getting a diagnosis of rheumatoid arthritis. This study is aiming to prevent rheumatoid arthritis in the United States. To learn more visit

Sjogren’s Syndrome does not have a long track record of clinical trials. However, there are now over 25 biologics or small molecules being investigated over the coming 3-5 years.

For Systemic Lupus Erythematosus, Biogen has a Phase 3 study (evaluating safety and efficacy) that looks at a new biologic referred to as “Topaz-1” in patients who are currently not on a biologic.

Patient Experiences in Clinical Trials

Kelly Owens participated in a clinical trial that investigated vagus nerve stimulation – a bioelectronic medicine (BEM) approach. Bioelectronics is an alternative to immunosuppression in autoimmune treatment that uses electronic stimulation to impact the inflammatory pathways of the nervous system.

As a patient with Crohn’s disease and inflammatory arthritis, Kelly has tried more than 15 biologics over 15 years and spent countless time in the ER or hospital, none of which stopped the overall decline in her health. However, while her years of disease were happening, Dr. Kevin Tracey was making great strides in treatments for inflammation, defining the “inflammatory reflex” and uncovering the role of the vagus nerve in inflammation.

In 2017, Kelly learned about a clinical trial taking place in the Netherlands that was using bioelectronic medicine to treat Crohn’s disease. After so many years struggling, Kelly explained the choice she made. “My husband and I sold everything that we owned and spent six months living abroad. Of course, that’s a huge jump to take, so we really had to evaluate what our risks were. The two biggest were, 1) how could we financially swing living in Europe for six months, and 2) this was my first ever surgery. My choices as we saw them were, I could take a risk on short term discomfort for a chance that a device could change my life, or I could stay as I was, in chronic pain, using mobility devices, and parenteral nutrition in place of eating. We took that jump.”

In the trial, Kelly had a device implanted that provided electric stimulation to her vagus nerve. Within two life altering months, Kelly was not just mildly better, she was deemed to be in remission. It was a success. It’s been four years since her surgery, and Kelly finds it hard to imagine what life would be like without the innovative technology that so changed it.

“Patients who participate in clinical trials have a direct impact on advancing the future of healthcare by evaluating the efficacy of novel therapeutics, held up by the hope that if the therapy is found effective, future patients won’t have to endure the pain that they have. However, choosing to participate in a clinical trial is a deeply personal decision that must include an evaluation of the risks and benefits and some understanding of the prior research.”

Learn more about the Summit

We tackled the most pressing topics that impact patients and caregivers living with autoimmune conditions.

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Together, we’re accelerating the pathway to breakthrough treatments.