What the Cure Doesn’t Fix
New gene editing techniques have generated national excitement with the potential for a widely available cure for sickle cell disease. But that promise remains distant for most of the 4,000 Michiganders living with the blood disorder, most of whom reside in the Detroit area.
Meanwhile, basic care for adult “warriors” in Detroit remains inadequate, continuing a racist history of marginalization that has made sickle cell disease a symbol of medical inequity in the United States.
“What the Cure Doesn’t Fix” introduces you to Detroiters living with sickle cell disease. Most will likely never be cured — and for those who are, the cure is often seen not as a miracle, but as an important step in a much longer healing journey that all patients must undertake.
Trump cuts put Michigan sickle cell research at risk
This program has helped academics and policymakers push for improved care for sickle cell ‘warriors’ in Detroit.
Two sickle cell ‘warriors’ interviewed each other. Here’s what happened
We hoped their conversation would shed light on why curative treatments remain a rarity in Detroit.
Next up for people with sickle cell disease in Detroit: Hope
Patients with sickle cell disease are living “longer and longer, but not better and better,” pediatric Dr. Wanda Whitten-Shurney said.
How health care fails sickle cell patients
Federal regulators approved a new gene editing treatment for sickle cell, but many still face haphazard, uncoordinated care.
Medicine delivered a sickle cell cure. So why was he struggling?
The doctor examined the skin of Larenz’s lower back, mottled and blackened with blocked blood vessels, and declared bluntly that he’d seen enough. He was going to cure Larenz’s sickle cell disease.…
What Detroiters should know about gene therapies for sickle cell disease
After a long wait, gene editing might be on the way for sickle cell patients. Here’s what you need to know.
Detroit’s sickle cell community wants improvements to basic care
Detroiters with sickle cell disease say they need affordable, basic care as experimental gene editing treatments grab headlines.
