What’s Next for Sickle Cell Disease Improvement? Three Areas That Still Need Our Attention

Healthy black child and mother

Right now, close to 100,000 people in the U.S. are battling sickle cell disease (SCD). This means that 100,000 people, many of whom are children, spend days experiencing acute pain, dealing with costly and uncomfortable hospitalizations, and fighting off infections – all common side effects associated with SCD.

NICHQ recently completed a three-year, federally funded, Sickle Cell Disease Treatment Demonstration Program (SCDTDP) that aimed to improve care of patients with SCD. While there are many successes, such as improving patient access to care and therapies, the work isn’t done. Below, we have identified three key areas for continued improvement.

Future Sickle Cell Initiatives and Programs

People with SCD are living longer, a promising statistic that responds to programs like the SCDTDP. Yet as the patient population grows, the barriers to care will continue to affect more patients, highlighting the importance of these program’s continuance. The following standards can help support future programs’ success:

  • Using standardized data definitions and collection methods, and maintaining improvement science in all initiatives
  • Enhancing the national focus on the use and coordination of sickle cell registries
  • Developing standard SCD curricula and metrics of success to increase provider knowledge and enhance patient access
  • Taking advantage of the resources of federal SCD initiatives by supporting interagency coordination and cooperation
  • Supporting regionalization to sustain SCD healthcare systems’ capacity building

Healthcare Policy

Patients, families and community based organizations (CBOs) all play a role in advancing patient outcomes. Empowering all stakeholders as true partners in care can change patient outcomes for the better. Strategies supporting their role as key stakeholders include:

  • Using telehealth, telemedicine and telementoring to improve access to evidence-based SCD care
  • Creating standardized quality metrics to inform patient access and care
  • Increasing access to insurance for all SCD patients
  • Developing payment and reimbursement strategies that address care transition, care coordination services and preventative care visits
  • Creating workforce training and student loan forgiveness programs to encourage more qualified SCD healthcare professionals

Clinical Care

Free Webinar: NICHQ’s webinar, "Strategies and Next Steps for Improving Sickle Cell Disease," dove deeper into the lessons learned and recommendations stemming from the SCDTDP. Hear grantees share their on-the-ground efforts to create systems change and make a difference in the lives of children and adults with sickle cell disease. Find a free recording here.

SCD patents deserve educated care-providers and a robust system that can evolve with their changing needs. Success determinants include continued access to comprehensive care, care management plans that take all key stakeholders into account, and data systems that track outcomes and support QI. The key recommendations below provide some essential tactics for successful clinical care:

  • Implementing systems to track and increase rates of appropriate screening and preventative interventions
  • Establishing pain protocols, and providing widely available pain management plans
  • Requiring routine screenings for both mental health and social needs
  • Incorporating the six core elements of transition in all SCD facilities as appropriate
  • Providing adults with SCD with comprehensive care and medical homes when needed

Ultimately, these findings demonstrate that continued improvement is not only necessary, but possible. This need is especially significant when considered through a racial justice lens because of SCD’s prevalence among those of African descent: around 1 out of every 300 Black or African American babies is born with SCD. By pursuing improvement, we can address a significant health concern that disproportionately impacts black patients and families.

The SCDTDP’s success is owed to cross-collaboration between families, providers, community-based organizations and government agencies. By developing a shared aim, stakeholders can better come together to address systems-level problems that often seem daunting. The health improvements in the SCD population are in large part owed to a successful collaborative methodology, a methodology that deserves consideration as states and communities continue to work towards future health advancements.