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Opinion: The crucial Sickle Cell Data Collection program is in jeopardy
Without the Sickle Cell Data Collection program, we will see greater burdens and higher costs for both families and health care systems.
In December 2023, a groundbreaking announcement grabbed headlines: After years of anticipation, the Food and Drug Administration approved the first gene therapies for treating sickle cell disease, offering hope of eliminating life-altering symptoms.
News at the time also featured the treatment’s prohibitive cost — between $2 and $3 million per person. But many stories didn’t mention another fact: For many Americans with this condition, life-changing medications that cost just a few dollars a week remained — and remain — inaccessible. Never mind the million-dollar gene therapy.
