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When Precious Lee was a year old, she began to experience severe pain in one of her arms. Her mother, Tammy, knew something was wrong—Precious had stopped eating and wasn’t moving her arm at all—but the doctors at their local hospital didn’t share her concern. “My mom brought me to the hospital multiple times, but…
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 attention and demand innovative responses. NICHQ President and CEO Scott D. Berns, MD, MPH, FAAP, understands this need, perhaps better than anyone. His connection to the rare disease community is both…
Until recently, sickle cell disease (SCD)—the most common inherited blood disorder in the United States—was primarily considered a pediatric disease, with most children not surviving into adulthood. That’s changed over the last two decades, thanks to innovative advancements in care and treatment. But even as these advancements have helped more children reach adulthood, health systems…
Approximately 100,000 Americans are battling sickle cell disease (SCD), an inherited blood disorder that primarily affects individuals of African and Hispanic descent. SCD causes episodes of excruciating pain and can result in stroke and organ damage, which is why timely and coordinated care is critical. But a shortage of expert providers, especially in rural and…
In recent months, there has been a surge of legislative actions for children’s health advocates. New laws have been passed that provide funding for programs and research initiatives essential for improving the health and well-being of children and families across the country. Here, NICHQ provides an update on the legislation, as well as a brief…
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…
Precious, a child born with sickle cell disease, spent days crying because she was suffering and no one knew why. Later, when Precious was diagnosed, her family would learn her tissues were deprived of oxygen, causing frequent pain episodes that required medication for relief. Fatima Oyeku was left in hospital emergency rooms, waiting in excruciating…
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. This is what happened in Missouri as part of the Sickle Cell Disease Treatment and Demonstration Program (SCDTDP). As teams were working towards creating better…
If you have sickle cell disease (SCD) and live in Indianapolis, you’ll likely face little problem accessing care and support from trained specialists. But travel outside Indiana’s capital city and many communities lack supports to help those with SCD manage their disease. “Lake County has the greatest need for pediatric SCD care, but despite its…
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….