CSU Educational Pilot Shows Drug Access a Major Hurdle

A new pilot program that used a messaging app to improve disease education among Latin Americans with chronic spontaneous urticaria (CSU) suggests that while the technology is feasible, most patients struggle more with access to biologic therapy than access to reliable information.

WhatsApp was a feasible means by which to conduct patient education in the study. | Image credit: Farknot Architect - stock.adobe.com

Writing to the International Journal of Dermatology, corresponding author Gil Yosipovitch, MD, of the University of Miami’s Miller School of Medicine, and colleagues said the pilot was designed to help better understand the “structural, geographic, and economic barriers” that keep patients from receiving appropriate management with targeted, guideline-based therapy.1

It has been more than a decade since the FDA approved the targeted biologic omalizumab (Xolair) to treat CSU, on the strength of a phase 3 study finding that the therapy led to a significant reduction in symptoms among people with the condition.2

The investigators wondered whether digital patient communities might be leveraged to boost patients’ understanding of their disease and of available therapies. They noted that such models have been used in other diseases, though they said digital education remains “underexplored” in CSU.

Yosipovitch and colleagues decided to see whether it would be feasible to use the messaging tool WhatsApp to facilitate patient education among Spanish-speaking adults in Latin America with CSU.

A total of 30 patients registered for the program, but just 7 participated in a moderated 3-day WhatsApp group in which they received Spanish-language modules related to topics including CSU pathophysiology, triggers, and evidence-based management. The program also included discussion prompts.

The participants represented Uruguay, Spain, Argentina, Cuba, Colombia, and Chile. Most of the patients were women, and most were between the ages of 30 and 49. None of the patients had previously participated in a CSU educational program, the investigators said.

The participants were given a 15-question true/false assessment at enrollment to see what their baseline knowledge was.

Yosipovitch and colleagues found that WhatsApp was a feasible means by which to conduct patient education. It is free to use, and the participants were accepting of the technology. However, its ability to increase patient knowledge was difficult to assess because patients already had high levels of knowledge at baseline and few patients completed post-intervention surveys.

The authors said 4 patients scored 100% on the pre-intervention survey, and all patients scored at least 80%. That strong baseline knowledge, the participants said, was due to years of experience with the disease, online self-education, and peer-support communities.

While a lack of disease knowledge did not appear to be a major barrier to evidence-based care, access to therapy was.

“Participants from Cuba, Uruguay, Colombia, and Argentina described omalizumab as ‘not available,’ ‘impossible to access,’ or financially unattainable,” the investigators said. “Those who eventually received omalizumab reported dramatic improvement.”

Some patients also reported that their physicians did not appear to be up-to-date with the latest treatment guidelines, diagnostic criteria, and stepwise management for CSU, Yosipovitch and colleagues said.

“Some [patients] were told their symptoms were due to ‘stress’ or ‘allergies,’ resulting in delayed treatment and heavy reliance on peer communities for validation and support,” the authors wrote.

The investigators said their small sample size and limited post-survey completion rates limit the scope of their findings. Still, they said their pilot program suggests that future studies should explore ways to incorporate provider-facing educational modules and limit participant attrition.

“Such approaches may better address diagnostic delays, inappropriate corticosteroid reliance, and disparities in CSU care across Latin America,” they said.

References

1. Edwards E, Lange Nava C, Constanza J, Tran A, Abramovits W, Yosipovitch G. Feasibility and patient experiences in a WhatsApp-based educational pilot for Spanish-speaking adults with chronic spontaneous urticaria. Int J Dermatol. Published online January 13, 2026. doi:10.1111/ijd.70265

2. Maurer M, Rosén K, Hsieh HJ, et al. Omalizumab for the treatment of chronic idiopathic or spontaneous urticaria. N Engl J Med. 2013;368(10):924-935. doi:10.1056/NEJMoa1215372