A Patient’s Plea for a New Paradigm in Autoimmune Disease Save

A current article in Nature Reviews Rheumatology has a patient boldly asking why we rheumatologists aren't more like her oncologists?

In this "World View" article, Sarah Sisbot provides a poignant critique of the current state of rheumatology, contrasting her experiences as a breast cancer survivor with her ongoing struggle an autoimmune disorder.  She writes about how her oncology care was defined by genetic precision and biomarker-driven monitoring, but her rheumatology care was not. Instead she has failed seven failed lines of therapy her her diagnostics and monitoring seem rudimentary. 

She contends that rheumatology seems satisfied with traditional (antibody) testing and composite scoring systems that often fail to precisely or more accurately capture her underlying immune dysregulation. What rheumatology offered her were ineffective appointments with long intervals (delays) between when she was waiting for something, anything to happen.  Joint aspirations did little. She paid out of pocket for for flow cytometry that identified she had elevated T helper 17  (TH 17) cells — leading her rheumatologist prescription for an IL-17 blocker.

The PATIENT recommended a better individualized approaches that may include:

• Establishing a longitudinal, multi-centre registry 

• Collect deep clinical, immunological and genomic 

• Utilize precision methodology (single-cell sequencing, flow cytometry, complete HLA typing, cytokine and antibody profiling

• Correlated patient treatment responses to cellular/cytokine/antibody shifts over time 

She prefers categorizing patients by their unique biologies (mechanistic clusters) rather than there manifestations, diagnostic points or other phenotypes.

 She advocates for a shift toward biologically grounded classification systems—moving away from broad disease labels and toward "mechanistic clusters" driven by specific cytokines or genetic markers.  She feels that rheumatology patients should benefit from the current practices in oncology with "..tissue-informed assessment of the cells, cytokines and antibodies driving their disease, and begin targeted treatment with the opportunity to contribute to research." 

She believes that patients should be included "..in the research process” and that clinical trials should measure whats important to patients.