The times, they are a-changin’ in the world of CAD

I blinked several times in the bright sunlight as I started down the stairs that had been rolled up to the airplane. The airport seemed strangely built, with two large buildings topped by tall, cone-shaped roofs. A man was at the bottom of the stairs, and we instantly recognized that he was waiting for us. The only expat among a host of Indonesians, he was waving and smiling fervently, like a typical American abroad.

It was 1995, and we were forming our first impressions of a place that seemed far different from our native Alabama. People gardened with implements made of tree branches and stones, and at times, we’d see men wearing gourds as clothing. Women carried their produce to market in bags called “nokens,” which were suspended from their foreheads and down their backs.

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Tracking the changes

Life isn’t the same here in Papua now as it was then. People today are quite familiar with computers and cellphones. They’ve adapted and changed along with new inventions.

A personal change I’ve experienced has been my diagnosis of cold agglutinin disease (CAD). CAD was first described in 1903 by Austrian-American physician Karl Landsteiner. Knowledge about the disease was sparse back then, and the advice given to “CADdies,” as those of us with CAD call ourselves, was to “stay warm.” Finally, in the 1990s, CAD patients were being treated with the monoclonal antibody rituximab, the gold standard of treatment that I started receiving in 2018.

Like life in Papua, things are changing in the world of CAD. Research provides new insights into treatments and other aspects of living with CAD. A few years ago, the U.S. Food and Drug Administration approved Enjaymo (sutimlimab-jome), the first and currently only therapy for CAD. It has shown great promise for many of us CADdies. Now, another investigational therapy appears to be showing some promise.

Two stories here at Cold Agglutinin Disease News recently caught my eye. The first, “FACIT-Fatigue questionnaire reliable CAD measure, study finds,” reported on CAD patients’ impressions of the FACIT-Fatigue scale and data from two Phase 3 clinical trials. The study was published in the journal Frontiers in Hematology.

As I read the article, I thought to myself, “Yes, this is absolutely right!” It offered a conclusion I’d instinctively known but hadn’t seen confirmed by research before. The predominant effect of cold agglutinin disease is fatigue, and the lower our hemoglobin levels are, the more tired we are. My own personal conclusion is that I should prepare for a health checkup if I find myself continually dragging myself out of bed.

The second article, “ANX1502 tablet shows promise in proof-of-concept CAD trial,” concerns the oral small molecule ANX1502. The story gets a bit technical in its discussion of the mechanics of this investigational treatment, but the upshot is that it seeks to suppress a protein that triggers CAD. “In CAD, this would reflect in less or no hemolysis and a reduction in symptoms,” it notes. Research is ongoing, and I’ll be following it closely.

One interesting thing about ANX1502 is that it’s an experimental oral treatment, not an infusion. While the good people at the Spencer Cancer Center in Opelika, Alabama, where I receive my infusions, are friendly, I wouldn’t complain if I never had to sit in those big, fluffy chairs and get my arm stuck ever again.

It seems as if there’s hope on the horizon for this chronic malady. I fully expect to be dealing with CAD for the rest of my life, but I feel like I’m getting closer to being the driver of my own healthcare. I can evaluate my fatigue levels and use that as a basis for seeking treatment. Then, perhaps one day I’ll be able to go to my doctor and receive an oral medicine rather than something delivered intravenously. That would be great progress.

Note: Cold Agglutinin Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Cold Agglutinin Disease News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to cold agglutinin disease.