Following the Thread of Autoimmune Research
Introducing The Connective Thread: Plain-language autoimmune research updates, published by a patient, for patients
My mom used to text me articles about new Sjogren’s treatments. She meant it as an expression of care, but I eventually asked her to stop. Reading about therapies that might be years away, if they arrive at all, just made me sad.
Still, ignoring the research didn’t feel right either. A new biologic, ianalumab, may become the first approved treatment for moderate to severe Sjogren’s as soon as this year. I’ve reread the Novartis Phase 3 announcement from last August and the January update, and Googled "When will ianalumab be available?" too many times to count. Even though I sort of know better, I've had my heart riding on it.
Even as I’m following ianalumab’s progress, I’ve had to remember that there’s a whole machinery behind whether a drug ever reaches patients. Drug development is expensive, and that shapes how results are presented and who can access treatments once they exist. Press releases and headlines tend to focus on whether a trial ‘met its endpoints,’ but behind that are questions about market size, pricing, and reimbursement that can slow things down or keep therapies out of reach. I’ve found biotech investor coverage useful, not because I care about stock prices, but because it offers a more candid view of how companies think about these tradeoffs and what that might mean for patients. This newsletter grew out of the tension between wanting to stay informed and not letting my hopes rise and crash with every announcement.
Finding my way through the science
Finding my way through the research was slow at first. Translating and contextualizing clinical language was initially a bit more than I could manage. I’m an English major, after all, and not a clinician. Some days, I am pretty fatigued from illness. It was a lot to try to work through a haze of brain fog and wrangle with some truly technical and advanced terminology.
How I use AI
It eventually occurred to me that, in this context, AI could be very helpful. It has been. I use it to scan new papers, pull out structured details from primary sources, and sketch early drafts. I fact-check and edit everything that appears here.
I set the editorial direction and I research the highlighted findings pretty much obsessively before I publish anything. I do the thought work and make the judgments that serve, I hope, to best present the realities of treatment options and research.
What you can expect
My goal is to offer a reference you can return to and a voice that stays grounded. I won’t breathlessly report every “breakthrough” and then sign off with “ask your doctor.” I’ll do my best to be clear about what the research shows and what it doesn’t, and whether that means nothing has changed yet, or that a hopeful result is still many years away from reaching patients, if it ever does.
Getting back into the research has reminded me why it’s worth following at all. It helps me remember that many skilled people are working hard on these problems, even when progress feels slow. It also helps me make sense of my own body. Autoimmune diseases are strange and often counterintuitive, and, while research doesn’t fix that, it does offer pieces of an explanation.
A note on scope and limits
The conditions I focus on—Sjogren’s, lupus (SLE), Hashimoto’s, rheumatoid arthritis, celiac disease, and related disorders—often overlap and share underlying immune dysfunction. They also disproportionately affect women in a medical system that has not always taken women’s pain seriously or funded these conditions adequately. In that context, I think we need as many careful, patient-centered resources as we can get. I hope this can be one of them.
I’m not an MD, a researcher, or a clinician. Nothing here should be taken as medical advice. I’m a patient trying to understand this landscape alongside you. If I get something wrong, please let me know.
Thank you for reading,
Kelly at The Connective Thread