September is for Sickle Cell Awareness

Strategies for providers to improve the experience of care for young people living with SCD and enhance the process of transition from pediatric to adult care include educating pediatric patients early about the process of transitioning to adult care, streamlining systems for sharing medical records, and considering bias when making pain management recommendations. Learn more about each strategy, and read insights from Mikeia Green, a fourth-year medical student at UC Davis, who has successfully transitioned from pediatric to adult SCD care.

In the past several decades, clinicians, public health professionals, and those with lived experience have seen advancements in Sickle Cell Disease (SCD) treatments and research that have significantly improved outcomes and increased life expectancies for people living with SCD. For example, the FDA-approved medication hydroxyurea (HU) has been recommended as a SCD standard of care due to its ability to help people with SCD mitigate pain and the need for blood transfusions. Preventative measures, such as screening children and adolescents for risk of stroke and ensuring that all people who have SCD receive recommended vaccinations, have also been instrumental in reducing complications associated with SCD. And recently, development of gene therapies has presented possibilities of a new cure. Conversations on how to improve access to care should continue, and these three recommendations begin with some of the most pressing needs.

Whether transitioning to college or a full-time job, it's a time when young adults are going to be establishing their independence from their nuclear family and taking responsibility for their own needs. For a young person with special healthcare needs such as SCD, the responsibilities are compounded by the additional need to begin transitioning from pediatric to adult care. Read more for four helpful strategies for transitioning from pediatric to adult care for people living with sickle cell disease and other special health conditions. 

For NICHQ’s current and future work, I am motivated by wanting to be a better version of myself in service of others. Wondering whether my own implicit biases impacted my care of patients and families, I realize that I cannot redo past ER experiences. If I could go back, I would slow down to acknowledge and try to set my biases aside and approach patients from a personally more informed perspective. But now, I can use my past, present, and future experiences to ensure NICHQ is amplifying important lessons from this multi-year effort reflecting the compassion, care, and commitment of hundreds of dedicated professionals in pursuit of equitable, accessible, and quality healthcare for people living with sickle cell disease.

Sickle cell disease care is being improved for Indiana's children, and new strategies are helping support better transitions of care.

An internationally recognized telementoring initiative is transforming provider training to enhance care delivery and improve access to care and quality of life for SCD patients across the country.

People who have sickle cell disease and very vulnerable to COVID-19 impact. As we enter the fourth month of the pandemic in the U.S., we’re sharing how  providers and advocates have remained nimble to ensure that comprehensive and consistent care is maintained throughout the pandemic and beyond.

Quality improvement in public health means working through every sector and influence that affects how people live. At the highest level, this includes the rules and laws where people live. Read how Missouri is creating better care for individuals with sickle cell disease by working with the state government to make change.

Precious Lee has spent her lifetime navigating the health system, first as a patient with SCD and then, after her son Melvin was born with SCD, as a mother. She has lived with the impact of SCD, witnessed significant advancements in care, and intimately knows the barriers families still face. Here, she describes those challenges and elaborates on opportunities for continued improvement.

When kids with sickle cell disease come to an emergency room (ER) asking for painkillers, the care can sometimes be less than ideal. In a busy ER, there can be long wait times, and, especially with an illness like sickle cell disease that has no visual signs of pain, doctors sometimes question whether a patient is really in a medical crisis or just drug seeking.

Explore strategies and examples from communities working to improve care for patients with sickle cell disease (SCD). All results are taken from NICHQ’s recently released congressional report from the Sickle Cell Disease Treatment Demonstration Program (SCDTDP), a national effort that sought to improve the lives of those living SCD. 

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. We can change that. Here are three key areas for targeted improvement.