Coalition roundtable held in San Diego at 2023 ASH meeting

The in-person roundtable, held on December 9, 2023, by High Lantern Group, in collaboration with American Society of Hematology, sponsored by Novo Nordisk, explored future opportunities for the World Coalition on Sickle Cell disease (WCSCD). Dr. Isaac Odame Haematology Section Head at SickKids and Medical Director of the Global Sickle Cell Disease Network, delivered opening remarks, emphasizing the power of partnership to make progress on sickle cell disease. An open conversation on the landscape of organizations working on sickle cell disease and how the WCSCD could more effectively take on and coordinate action against the disease followed Dr. Odame’s remarks.

Key Takeaways

The dialogue resulted in five key takeaways. These takeaways are presented as suggestions toward spurring action within the WCSCD and its members.

1. Sickle cell disease is a growing public health threat, but it is not earning the attention it requires from national governments, health ministries, and global stakeholders. There is a risk that policymakers and institutions under-focus on the disease’s growing burden.

2. Governments should leverage economic and finance ministries to fund solutions. The solutions to treat and prevent this disease have been identified, but they require the funding and resources to truly scale.

3. Decision makers must ensure that patient voices are reflected in sickle cell disease policy and initiatives. Patient groups understand the unique circumstances of their regions. To have an efficient impact, the Coalition should listen to them.

4. WCSCD is in a unique position to leverage the full strength of its diverse members to scale newborn screening, integrate disease management into primary care services, improve access to treatments, bolster awareness, and support innovation – all while amplifying patient voices. By working together across industry, government, advocacy, and the medical community, and more, the Coalition can have a greater impact than other singularly focused organizations.

5. WCSCD must align its members to prioritize shared, high impact and achievable near-term objectives. The Coalition should not overextend its scope or its resources. It should consider determining 6-, 12- and 36-months goals, and organize itself to act toward those goals.