What happens when a patient wants to ‘solve’ an incurable disease?
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AI, multiomics testing, and personalized therapies can be useful—to a degree—but require the use of physician judgment in interpreting clinical information. They have to be interpreted in light of the patient's medical history, examination, and current standards of care.
—Daniel Careaga, MD
Bryan Johnson’s response to being diagnosed with autoimmune gastritis (AIG) will feel familiar to many physicians. A patient hears “incurable autoimmune” and translates it into “unsolved.”
People reports Johnson’s account on X: “Current medical standards treat AIG as something to be managed, not resolved,” he wrote. “We want to change that,” he stated, further adding, “In the age of AI, multiomics, and custom-built DNA, proteins, and cells, no condition should be presumed incurable simply because no one has yet tried to cure it with today's stack.” He also shared his plan going forward: “My team and I are going to try and solve my AIG.”[][]
What happens when a patient wants to 'solve' a currently incurable disease?
Daniel Careaga, MD, a US board-certified plastic surgeon and founder of Careaga Plastic Surgery, says, “AI, multiomics testing, and personalized therapies can be useful—to a degree—but require the use of physician judgment in interpreting clinical information. They have to be interpreted in light of the patient's medical history, examination, and current standards of care.”
This is clinically important because patients’ perspectives on autoimmune and chronic diseases are changing. Now, alongside their symptoms and lab reports, according to Michael DeShields, MD, patients also arrive with their wearable data, multiomic testing results, or artificial intelligence–generated reports.
Those expectations do not stay in the exam room. They are increasingly shaped, tested, and amplified in patient forums, where one high-profile experiment can quickly become a template for others.
Where the physician comes in: 3 steps to take
The physician’s first move is to explain what standard care is trying to prevent. Dr. Careaga says, “Patients should receive an honest discussion about what the medical evidence really supports currently.”
That distinction may be particularly important online, where a highly resourced individual’s personalized experiment can be mistaken for a practical roadmap for the average patient.
NICE guidelines state that autoimmune gastritis is a cause of vitamin B12 deficiency and recommends lifelong intramuscular B12 replacement when AIG is the cause or suspected cause of deficiency.[]
Shernell Surratt-Gary, DO, Clinical Advisor of Aura Wellness in Kentucky, says, “It's common for autoimmune gastritis to go undiagnosed until later in life because the symptoms are usually very mild. Some common signs of vitamin B12 deficiency include fatigue, numbness or tingling, brain fogginess, difficulty with coordination or balance, or ongoing anemia. Symptoms of a vitamin B12 deficiency may appear over time and can be blamed on aging or stress. Sometimes it takes a routine blood test to determine why someone has anemia without explanation.”
The second move is diagnosis. NICE recommends anti-intrinsic factor antibody testing when AIG is suspected in a patient with B12 deficiency, but it also states that a negative result does not exclude AIG.
It lists anti-gastric parietal cell antibodies, gastrin, CobaSorb testing, and gastroscopy with gastric body biopsy as further diagnostic options when suspicion remains.[]
The third move is surveillance. AGA guidance says surveillance endoscopy every 3 years should be considered in advanced atrophic gastritis. It also states that the best interval is not well defined and should be determined based on individual risk assessment and shared decision-making.[]
As these conversations move into patient communities, physicians may increasingly be asked not simply how to manage AIG, but whether standard care is ‘settling’ for management instead of pursuing a cure.
Related: A gastro calls out 2 gut-health trends doing more harm than good among patients