Insights

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.

Macy Parakh (she/her) is a Marketing Communication Intern Summer 2022 at NICHQ. She is a Master of Public Health (MPH) student at Boston University School of Public Health (BUSPH). Macy is studying Community Assessment, Program Design, Implementation, and Evaluation (CAPDIE) and Maternal and Child Health (MCH). She is originally from Toronto, Canada. Macy has a bachelor's degree in Communications from McMaster University. When Macy isn’t studying or working, she can be found baking, dancing, and spending time with her dog.

Madeline D’Onfro (she/her) is an intern on NICHQ’s HNCC Project this Summer. After growing up in Massachusetts, Madeline spent seven years living in Boise, Idaho and has now returned to the Northeast to pursue her Master in Public Health at Boston University. She is concentrating her studies in Community Assessment and Program Design and Maternal and Child Health. Madeline’s Summer QI project is to increase her average running mileage. In her free time Madeline enjoys hiking, cycling, and any other activity that allows her to be outdoors!  

Lyndsay Brooks (she/her) is a 2022 summer intern on NICHQ’s Marketing and Communications Team. Originally from Davidsonville, MD, Lyndsay is now a Master’s of Public Health student at Boston University (BU) studying Health, Policy, and Law and Maternal and Child Health (MCH). Lyndsay brings with her a background in public health, Medicaid policy, and pediatric healthcare. When she is not studying or working, she enjoys baking, knitting, and hiking. This summer, as a part of her Personal Quality Improvement Project, Lyndsay has also been training for a 5K.  

Elyse Anderson (she/her) is a Healthy Start Intern Summer 2022 at NICHQ. She is a Master of Public Health student at Boston University School of Public Health (BUSPH). Elyse is studying Community Assessment, Program Design, Implementation, and Evaluation (CAPDIE) and Maternal and Child Health (MCH).  She is from a town outside of Minneapolis, Minnesota.  Elyse has a Bachelor’s degree in Communication Disorders. After her undergraduate studies, Elyse worked at a children’s hospital in pediatric audiology. Elyse is the middle child of five. Her older brother has Autism, which has inspired her interest in pediatric public health work. Elyse’s summer QI project is on developing healthy morning habits to increase her productivity throughout the day. 

Lucia (Lucy) Burzynski (she/her) is a Marketing and Communications Intern this Summer at NICHQ. Born and raised in Milwaukee, she is currently a Master of Public Health student at Boston University specializing in Community Assessment and Program Design and Maternal and Child Health. Her Summer QI project is centered around spending more time with friends. Outside of her internship and school Lucy enjoys watching basketball, going for walks, and singing.  

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.

As NICHQ's Associate Director of Programs and Project Director for the Sickle Cell Disease Treatment Demonstration Regional Collaboratives Program and Content Development for Newborn Screening Clearinghouse initiatives, Kim Sprunk shares key takeaways and findings from the projects and their importance to NICHQ's overall programming goals.

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.

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.

Between 25 and 30 million Americans, many of them children, are living with a rare disease. The complex challenges facing these children and families deserve innovative responses. Here, NICHQ President and CEO Scott D. Berns, MD, MPH, shares his experiences, elaborates on successful strategies, and describes his goals for the future.

Advancements in care have helped more children with rare diseases reach adulthood, but health systems and providers have struggled to help children transition to adult care, resulting in high rates of complications and mortality for young adults. These strategies for helping young adults with sickle cell disease transition to adult care can save lives.