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 with 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 lines of therapy and thinks her diagnostics and monitoring were rudimentary. 

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

The PATIENT recommended individualized approaches that may include:

• Establishing a longitudinal, multi-centre registry 

• Collecting deep clinical, immunological and genomic data

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

• Correlating patient treatment responses with cellular/cytokine/antibody shifts over time 

Why aren't rheumatology patients categorized 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 could benefit from the current oncology practices with "..tissue-informed assessment of the cells, cytokines and antibodies driving their disease, and begin targeted treatment with the opportunity to contribute to research." 

Shouldn't patients be included "..in the research process” and clinical trials measure whats important to patients?