Resolution Designates September 2025 as Sickle Cell Awareness Month, Pushing for Better Screening and Gene Therapy Access

This resolution is essentially a formal statement supporting the designation of September 2025 as “Sickle Cell Disease Awareness Month.” Its main goal is to educate the country on Sickle Cell Disease (SCD), an inherited blood disorder that causes severe pain, organ damage, and can shorten life expectancy by up to 20 years. While this is a non-binding resolution—meaning it doesn't change any law or allocate new funds—it signals a strong push for public awareness, better screening, and increased access to new, life-changing treatments.

The Real-World Stakes of SCD

SCD is a serious health issue affecting about 100,000 Americans, but the impact is heavily concentrated: about 1 in 365 Black or African American newborns are affected. The resolution highlights that even with existing treatments, there are major gaps in care. For example, less than half of children with the disease are getting the recommended stroke screening, and many aren't using the preventative medications that could stop complications. If you’re a parent, this is the part that hits hard: the best known preventative care isn't consistently reaching the kids who need it most, and this resolution aims to close that gap through education.

The Policy Push for New Cures

The good news is that the medical landscape for SCD is changing fast. The resolution notes the recent FDA approval of two gene therapies that have been shown to cure the disease—a massive breakthrough considering stem cell transplants were previously the only cure. This is a game-changer for people living with SCD. However, these therapies are incredibly expensive, which is why the resolution points out that the Centers for Medicare & Medicaid Services (CMS) is working on a new payment model. This model would allow states to contract with drug makers based on how well these new therapies actually work for Medicaid patients, tying payment to real-world results. This is a smart move that recognizes the high cost of cutting-edge cures and tries to ensure access for those relying on public insurance.

What Awareness Month Actually Does

Designating September 2025 as Awareness Month is more than just a calendar marker. It’s a formal encouragement for schools, community centers, and healthcare organizations across the country to run programs focused on education. Specifically, the resolution emphasizes the need to teach people about the sickle cell trait (which over 2 million Americans carry), the importance of early detection, and accessing preventative care. For the average person, this means better information, potentially leading to earlier diagnosis for friends or family members, and increased pressure on local health systems to adopt the latest screening and treatment protocols. While it doesn't force change, it provides the political spotlight necessary to drive it.