Pain That Cannot Be Measured

Chronic Pain & System Failure

Vaso-occlusive crisis. Inadequate treatment. Racial pain bias. And the uncomfortable reality that gene therapy is not simply a medical breakthrough, but also a reflection of how profoundly existing systems have failed people living with sickle cell disease long before this moment arrived.

Last week, I wrote about the administrative side of accessing treatment: the 27 prior authorizations, the more than 60 hours spent on hold, and the exhausting bureaucratic infrastructure surrounding a therapy that had already been approved for my condition.

But the bureaucracy exists downstream of something much more immediate and much more physical.

Vaso-occlusive crisis — the most common acute complication associated with sickle cell disease — occurs when sickle-shaped red blood cells obstruct the body’s smallest blood vessels. Unlike healthy red blood cells, which are soft and flexible enough to move smoothly through narrow capillaries, sickled cells become rigid, distorted, and prone to clumping together. They begin to stack against one another. Circulation slows. In some areas, it stops entirely. The tissues beyond those blockages are suddenly deprived of the oxygen they need to function and survive.

What follows is ischemia: a state in which oxygen is no longer adequately reaching tissue. The body responds to oxygen deprivation the way it is biologically designed to respond — by generating pain signals intense enough to demand immediate attention. This is not generalized discomfort or temporary soreness. It is tissue injury happening in real time inside the body.

Most hospitals rely on a pain scale ranging from 1 to 10. In both my lived experience and the medical literature surrounding sickle cell disease, vaso-occlusive crisis pain frequently registers at the highest end of that scale — 8s, 9s, and 10s. Not constantly and not every day, but during active crisis episodes, it is consistently recognized as one of the most severe forms of pain encountered in emergency medicine.

I have lived with this experience since childhood. On average, I have experienced some form of vaso-occlusive crisis at least twice a month for 43 years. Long before gene therapy entered public conversation as a revolutionary innovation, many of us had already spent decades surviving a level of pain that the healthcare system simultaneously understood clinically and minimized socially.

THE TREATMENT FAILURE

The research literature surrounding sickle cell disease and pain

Sickle cell disease affects approximately 100,000 people in the United States, more than 90 percent of whom are Black. The disease has been documented in medical literature since the early twentieth century. Yet for most of that history — and in many clinical environments still today — treatment has centered primarily around management rather than resolution: hydroxyurea intended to reduce the frequency of crises, opioid medication intended to control acute pain episodes, blood transfusions intended to stabilize complications. These interventions matter. They save lives. But for generations, the underlying expectation was still that patients would continue living within a cycle of recurrent pain, organ damage, hospitalization, and medical skepticism.

The disparities in research funding closely mirror the demographics of the patient population itself. For decades, sickle cell disease received only a fraction of the research investment directed toward conditions affecting comparable numbers of patients from whiter and wealthier populations. The consequences of that disparity are measurable not only in delayed innovation, but also in shortened life expectancy, limited treatment options, and the normalization of preventable suffering.

I have spent 43 years navigating a healthcare system that was -by design- more prepared to question my pain than to adequately treat it.

THE CLAIM I AM MAKING

This is not an individual claim. I was not personally mistreated by a specific provider. This is a systems claim: the healthcare system was designed with a default user who was not me. The design did not account for my demographic. The design did not account for the historical context that shapes a Black woman’s experience of navigating chronic pain in American medicine. And AI has inherited that design without prior examination of it.

The governance recommendation is not: train your AI on data from more diverse patients. That recommendation alone is insufficient — because the data from Black sickle cell patients in the existing system already reflects decades of undertreated pain, and learning from that data encodes undertreated pain as the baseline.

The governance recommendation is: when deploying clinical AI, audit not just the demographic composition of training data but the equity of the outcomes that data reflects. If your training data encodes undertreated pain, your model will recommend undertreated pain.

I am 43 years into living with the consequences of a system that never examined what it was encoding.

NEXT

Next week: what 15 years in Japan taught me about navigating systems that were not built for your presence — and what that has to do with AI governance and inclusive design.

In two weeks: bridge-building as business strategy. The close of the four-month arc.

And through all of it: Lyfgenia: A Public Record continues. I will share updates from the collection process as I have information worth documenting.

I am still here. I am still counting.

Subscribe to receive every installment. Share with someone whose organization needs to hear this.

Subscribe now

Substack: https://drdede.substack.com

TEDx Talk:

Watch on YouTube

incluu: https://incluu.us/

Consultation https://calendly.com/dr_dede/consultation

If this resonated: Join the newsletter for essays, tools, and updates on AI governance and inclusive design. Book a strategy session: calendly.com/dr_dede/consultation

Learn about Rest as Resistance retreats: dr-dede.com/retreats-advocacy