Advocacy Update: Disability Incentives and Access to Care

One of our core pillars is advocacy — not as a one-time campaign, but as an ongoing commitment to making sure the people most affected by health policy have a real seat at the table.

In recent months, we’ve been focused on two areas:

Disability incentives: Many people living with chronic blood disorders face significant barriers to employment and financial stability. We’re working with policymakers to ensure that disability incentives are accessible, fair, and responsive to the realities of living with a chronic condition.

Emergency room experience: Patients with sickle cell disease often face long waits, lack of pain management, and dismissive treatment in emergency rooms. We’re partnering with healthcare advocates to document these experiences and push for systemic change.

This work is slow, and it often happens out of the public eye. But it’s vital. The decisions made in policy rooms today determine whether someone gets the care they need tomorrow.