Our Principles

The principles animating the work of the Partnership are:

• The fact that tens of thousands of individuals in the United States with Sickle Cell Disease lack timely, sustained access to high-quality, equitable, coordinated care and treatment is not acceptable to patients, families, communities, or our health care system.
• Because people living with Sickle Cell Disease suffer dramatically shortened life expectancy, multiple severe complications which can lead to hospitalization, acute and chronic pain, and other negative effects, there is an opportunity and a need to collaborate in a manner that improves the health of all individuals with Sickle Cell Disease.
• As a payer, regulator, funder of research and training, and provider, the federal government has a responsibility and an opportunity to help improve lives of individuals with Sickle Cell Disease.
• The COVID-19 pandemic has focused fresh attention on the importance of addressing long-standing racial inequities, health disparities, socio-economic barriers, and social determinants of health – all of which has led to worsened outcomes from COVID-19 for people with Sickle Cell Disease and Sickle Cell Trait. While no one organization or entity can fully address these historic barriers and challenges, new policies should be informed by and appropriately take into account these dynamics in order to assure continual change.
• There are abundant opportunities to support timely, sustained access to high-quality, coordinated care as well as current and future treatments. This requires advancing current policy ideas and developing novel policies.
• A multi-sector, collaborative, consensus-based process is the best way to identify and develop actionable and sustainable policy solutions to bring to federal policymakers because it recognizes the equities, expertise, and experience of health care stakeholders on this important issue.