The sickle cell community has historically been underrepresented in policy and legislation.
Sick Cells is committed to educating the SCD community on policy advocacy
and incorporating the SCD voice into legislation. We partner with other sickle cell organizations and patient advocacy group to advocate for policies that allow people with SCD to access the high-quality, specialized care we need.
Sick Cells submitted the following statement for the record to the House Energy and Commerce Committee Hearing on June 14, 2023. This statement details our comments on the introduction of the Sickle Cell Disease and Other Heritable Blood Disorders Research, Surveillance, Prevention, and Treatment Act of 2023.
With new legislators getting settled on the Hill, February brought a flurry of activity and opportunity. The Sick Cells team kept busy preparing for the National SCD Policy Forum (March 2023) and connecting with federal agencies and Hill offices to learn about their 2023 plans. This month’s highlights include the launch of event registration, two meetings with CMMI, an HHS event, and a few meetings on the Hill.