Trump’s Cuts–Now It’s Personal
By 
Like everyone else, I know how Trump and Big Balls’ cuts are affecting people in my circles. So here’s my friend Alessandra La Rocca-Link in the Lexington Herald Leader on how Trump’s cuts to medicine affect her personally.
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.”
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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.
MAHA bitches!