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Dermatology Diagnosis and Clinical Trials in the Autoimmune Community

Recorded October 2021 at the Autoimmune Community Summit.

The Dermatology Breakout session kicked off with a Patient Experience Panel featuring:
  • Howard Chang, Psoriasis Patient Advocate / blogger
  • Alisha Bridges, Psoriasis Patient Researcher
  • Becky Strong, Pemphigus Vulgaris Patient Advocate, International Pemphigus & Pemphigoid Foundation
  • Kathryn Shusta, Hidradenitis Suppurativa Patient Advocate

The panelists covered a few key topics including mental health and quality of life, access issues, and diversifying clinical trials.

In part two of the Dermatology Breakout, experts came together to discuss clinical trials and drug development. Panelists included:
  • Neda Shahriari, MD, FAAD, Dermatology-Rheumatology Fellow
  • Stacie Bell, Chief Scientific & Medical Officer, National Psoriasis Foundation
  • Bret Ringdahl, Behavioral Sleep Medicine Clinical Psychologist, the Insomnia and Sleep Institute of Arizona

Patient Experience Panel

Mental Health & Quality of Life

Becky’s Experience: “My experience is a bit different because my disease happened in my early 30s.” Becky was fit and athletic, but the pain of her disease left her feeling severely run down. It took her a long time to stop blaming her body for “betraying” her. But mental health counseling made a big difference.

“I’ve heard others in our community relate this to PTSD.”

After processing all of her complex emotions through therapy, Becky entered a phase of acceptance, which then led her to advocacy. “How can I help somebody else get diagnosed quicker? How can I share my story and the things I’ve learned so they don’t have to go through the trials I went through?”


The panelists spoke to the challenges they have experienced accessing treatment. A key takeaway: “Leave doctors in charge of our medical decisions.”

Becky talked about her experience with step therapy. After going through many medications looking for what would best suit her needs, Becky finally came to her final option, a biologic, but insurance wouldn’t cover it, despite having tried the other available options.

Some tips to manage step therapy and other issues accessing medication included:

  • Learn what your insurance covers and doesn’t
  • Learn the appeals process
  • Get comfortable talking to your doctor

Diversifying Clinical Trials

Alisha shared how People of Color are underrepresented in clinical trials and as a result, mainstream therapies may not be built for their unique environment. Light therapy for psoriasis is being customized now for POCs. “We’re not represented in (phototherapy) studies to learn how much sunlight it would take to show improvement for our skin. Maybe it would take more because of the melanin, but we don’t know that because it hasn’t been properly studied in People of Color.”

She also works with the National Psoriasis Foundation’s Citizen Scientist program where patients can share data about their disease and compare with others.

“Patient research has helped me, not only advocate for myself but to advocate for other minority groups, women and different age groups because a lot of those studies are heavy with men who are White and older.”

Clinical Trials & Drug Development

Clinical Trials 101

Stacie Bell, PhD, opened the panel by walking attendees through the role of clinical trials in treatment development and options. She talked about the four phases of clinical trials and shared that the current clinical trial workflow takes approximately 10-15 years and 2-3 billion dollars!

Treatments on the Horizon

Dr. Neda Shahriari, a dermatologist opened her remarks with excitement about the future of treatment:

“I’m here to discuss some of the newer medications that are in the pipeline for different dermatologic autoimmune conditions. It’s really exciting how far research has come in terms of finding agents that help these different conditions. It seems like not long ago where our hands were tied – we were limited with topical medications or a few oral medications. Clinical trials really pushed the edge and allowed us to have more treatments in our armory for our patients.”

Of note, Dr. Sharhriari shared that there is a new biologic being studied in Pemphigus Vulgaris patients who have failed other treatments, 50% of whom saw improvement over time. The most common side effect was headache.

Patient experience in clinical trials

Bret Ringdahl, PhD, talked about his personal experience participating in a clinical trial as a psoriasis and psoriatic arthritis patient. Being involved in that study gave him hope. He advocates for serious consideration of clinical trials. It’s a risk but the rewards can be great for individuals and the community.


Get connected and join the ARNet community to help drive research and clinical trials.

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.