I have a rare, chronic disease. Trump’s cuts stop research that could help me | Opinion

Last summer, my health journey reached a critical benchmark. After years of suspecting something was “off” and running from specialist to specialist, a bone marrow biopsy delivered diagnostic clarity: I had a rare, chronic disease of the immune system called systemic mastocytosis. Systemic mastocytosis is defined by an overproduction of mast cells, and it affects roughly 32,000 Americans.

Looking back, I remember getting hung up on two words: “rare” and “chronic.” Up until that point, I had subscribed to the common storyline of illness: something was amiss and, once I had a diagnosis, it would be treated and cured. The narrative arc was simple: diagnose, treat, cure. I and millions of others living with chronic illness live outside this narrative framework. Our stories twist and turn; they often lack clarity and a clear path forward. Today, in the face of catastrophic cuts to medical research, the stories of those suffering with chronic illness are grimmer than ever before.

Care for rare chronic illnesses is often uneven. My local physician encouraged me to seek out a specialist, though true specialists for rare illnesses are hard to come by. Then, of course, are the costs associated to make such visits possible. A recent survey of medical professionals found that only 14 physicians worldwide work in dedicated clinics for mastocytosis. Without a specialist nearby, I have grown used to bringing PubMed articles with me to doctor’s visits. I’ve grown used to unsatisfying answers to my questions: “we aren’t sure,” “maybe,” “we just don’t know.”

I am not alone in this struggle. Systemic mastocytosis and other mast cell diseases fall under the larger umbrella of chronic immune disease, which includes autoimmune disorders. Estimates vary, but roughly 5-8% of the US population is affected by chronic immune disease, and rates are on the rise as methods for detecting and diagnosing these illnesses improve. Anywhere from 16 to 26 million Americans suffer from immune related diseases, many of which are exceptionally challenging to manage and often require a team of doctors collaborating across specializations.

July is a month dedicated to highlighting the costly tolls of chronic diseases. The author Susan Sontag eloquently reflected that those suffering with illness hold “dual citizenship, in the kingdom of the well and in the kingdom of the sick.” Moving in and out of these two kingdoms has become a defining challenge of my adulthood. Lately, I have been able to manage my symptoms and find myself more and more in the kingdom of the well. Millions of others are less fortunate, and when they enter the medical system for answers and support, they regularly come up short.

The Trump administration’s deep cuts to medical research at universities and the NIH ensure that those suffering with chronic immune diseases spend more and more time in the kingdom of the sick. Historically, the NIH has been a leading funder in research on rare diseases like mastocytosis. As of this writing, a handful of NIH grants supporting mast cell research remain intact, but the National Institute of Allergy and Infectious Disease, which funds many chronic immune disease projects, has seen its budget slashed by $838 million.

Cuts of this magnitude not only hurt targeted research initiatives, but cripple the very structures needed to support advancements in the diagnosis and management of chronic illnesses. These large-scale reductions in infrastructure, staff, grant opportunities, and clinical trial capacities will slow the pipeline for new discoveries and treatment. During Chronic Disease Awareness Month, as we grapple with the significant impact of chronic disease on our selves, our loved ones, and our communities, we do so against the backdrop of these widespread cuts. Research funds the knowledge creation that could be the real bridge taking those of us from the kingdom of the sick to the kingdom of the well. Our current leadership sees fit to let that bridge fall into disrepair.

Alessandra La Rocca Link is a historian and educator living in Louisville, Kentucky.

This story was originally published July 24, 2025 at 7:42 AM.