The Fight for True Health Equity

Sickle Cell Anemia (SCA) affects three times as many people in the U.S. as cystic fibrosis (CF), yet it has historically received far less federal and private funding. Between 2008 and 2017, the National Institutes of Health (NIH) allocated 3.4 times more funding per person for CF than for SCA, and during certain periods, CF received 971 times more private funding.

The consequences of these disparities are painfully clear: Cystic fibrosis has benefited from a surge of FDA-approved treatments, while SCA continues to lag behind in drug development, clinical trials, and therapeutic innovation. These funding gaps were not accidental—they were shaped by deep-rooted systemic inequities, fueled by the perception of SCA as primarily a "Black disease."

Now, as gene therapy is being promoted as a groundbreaking solution for SCA, new concerns are emerging. Rather than correcting historical neglect, the way funding shifts are currently structured risks creating an illusion of choice, subtly steering patients toward a singular, highly invasive intervention. The rollout of gene therapy—tied heavily to Medicaid expansion and CMS negotiations—raises critical questions: How much real agency will patients have when selecting their treatment options?

Federal agencies and private stakeholders seem eager to position gene therapy as the primary solution, often at the expense of holistic, community-centered care models. If alternative treatments, preventative strategies, nutritional interventions, and culturally competent care are not funded and prioritized equally, it suggests that this push is driven as much by market forces and profitability as by genuine concern for patient welfare.

At this critical juncture, Creation of Society is uniquely positioned to help counterbalance this trend. We advocate for democratized healthcare solutions that restore patient autonomy, uplift community-led models of care, and promote a broad spectrum of healing options—not just those backed by pharmaceutical interests. We believe true health equity cannot be achieved by replacing one form of neglect with another. Sickle Cell Warriors deserve the same level of investment, innovation, and respect for their choices as any other community.

If equity is truly the goal, authentic choice must be preserved—not manufactured. It is time to dismantle systemic inequities, reject one-size-fits-all approaches, and center holistic wellness, cultural competence, and community-driven healing at the heart of Sickle Cell advocacy.

COS' Think Moringa System

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Our Creation of Society Think Moringa system aids in freeing the sickle cell community by promoting food justice and empowering individuals to heal using nutrient-rich, culturally grounded solutions instead of depending solely on invasive medical treatments.

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