National Sickle Cell Awareness Month
This month is also an opportunity to share about the connection of newborn screening to children's health outcomes. Newborn screening is an essential public health service that screens babies for serious but treatable medical conditions.
Most states screen for 29 of the 35 conditions recommended by the Advisory Committee on Heritable Disorders in Newborns and Children, including sickle cell and other rare diseases. Although these conditions are rare, each year more than 5,000 babies are identified with a newborn screening condition.
Explore HRSA's Newborn Screening Information Center. NICHQ partnered with a national expert in newborn screening to develop the website, which delivers general as well as state-specific newborn screening information.
Use our helpful action kit for Improving Follow-Up After Newborn Screening.
Help NICHQ Raise Awareness and Improve Care for Patients Living with Sickle Cell Disease
Sickle Cell Disease (SCD), an inherited blood disorder that is more prevalent in individuals of African and Latinx/Hispanic descent, affects approximately 100,000 Americans. People living with SCD experience acute pain crises, dangerous infections, and other serious health problems that can damage every organ in the body, requiring providers who are knowledgeable and understanding.
In addition to managing pain and navigating other health challenges, people living with SCD and their families and family caregivers are also often faced with overcoming barriers that lead to missed appointments and reduced quality of care.
Join our efforts to bring attention to the unique experiences and challenges of people living with SCD and the variety of resources available to health care professionals! Use the hashtags #SickleCellMatters2021 and #SickleCellAwarenessMonth to help raise awareness on social media about sickle cell disease and sickle cell trait, and check out the below learning opportunities, discussion guides, and other helpful tools and resources about sickle cell disease.
Reducing Missed SCD Appointments and Improving Patient/Provider Relationships
People living with SCD and their families and caregivers miss critical healthcare appointments for a variety of reasons. According to a 2019 national study, a majority of patients reported missing a clinic appointment in the previous 12 months.
In disseminating the study results, NICHQ interviewed patients, caregivers, and providers – and found that systemic and individual bias and racism contributed to poor patient/provider relationships, which in turn undermined solutions to appointment attendance problems.
While the relationship between patients or caregivers and their providers is not the main problem, improving that partnership can be a big part of the solution.
Reporting to Congress
As we push to enhance access to services for people living with Sickle Cell Disease and improve and expand provider and patient education, NICHQ is working with five regional teams from across the country to deliver a comprehensive report to Congress detailing outcomes from the Sickle Cell Disease Treatment Demonstration Regional Collaboratives Program.
This project will also produce a Model Protocol that details strategies and lessons learned for improving sickle cell disease care, as well as a Compendium of Tools and Materials that share promising practices for improving sickle cell disease support.
Related Articles about Sickle Cell Disease
Continuing Sickle Cell Disease Care During the COVID-19 Pandemic
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.
Sickle Cell Pain Protocol Reduces Wait Times for Meds and Eases Patient Frustration
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.
A Roadmap for Improving Sickle Cell Care in Underserved Areas
Sickle cell disease care is being improved for Indiana's children, and new strategies are helping support better transitions of care.
Creating Better Advocates for Sickle Cell Disease Care
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.
Four Solutions for Sickle Cell Disease Support
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.
How One Mom is Raising the Profile of Sickle Cell Disease
Tammy Smith's daughter, Precious, often got sick as a baby and she cried—a lot. "One time she was holding her arm and we thought it was broken, but it wasn’t. Another time she couldn't even sit up. She would just cry and cry. The doctors kept giving us medicine, but it didn't help," recalls Tammy.
Start Producing Better Sickle Cell Disease Outcomes in Your Community Today
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.
What’s Next for Sickle Cell Disease Improvement? Three Areas That Still Need Our Attention
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.