Global Genes Grant Awardee Achieves Goal of Designating 6 Global Centers of Excellence for Life-Threatening Disorder
Global Genes is proud to announce that one of our RARE Patient Impact Grants, awarded to Congenital Hyperinsulinism International (CHI International), was used to create the Hyperinsulinism Centers of Excellence (COE) program. Through a robust application process, CHI has designated six medical centers around the world for providing the highest quality of care for congenital hyperinsulinism patients and their families.
Congenital Hyperinsulinism (CHI) is a life-threatening disorder that causes dangerously low blood sugar levels. Without enough sugar, the brain does not have the fuel it needs to function normally. Prolonged or severe low blood sugar can cause seizures, brain damage, and even death. Because this disease can be severe and require complex medical treatments, parents may not know which facilities are best equipped to provide their child with high quality care.
Why “Excellence” Matters
Julie Raskin, Executive Director of CHI International, knows firsthand how important it is for people diagnosed with CHI to receive care at a Centers Of Excellence. Her son, Ben, was diagnosed with CHI in the second week off life, 25 years ago. He was lucky to be transferred to the Children’s Hospital of Philadelphia (CHOP), one of only two hospitals in the United States to receive this designation. At the time, along with Ben, Julie temporarily moved to Philadelphia with her two-year old daughter so Ben could have this expert care. Many years later, after founding the nonprofit with other parents of children with CHI, Julie and her team identified that not all families are as lucky as she was to receive care where doctors and researchers are specialists in CHI.
In order to help other families looking to receive the best care possible, CHI International created a robust program to designate medical centers across the world. Nine medical centers submitted applications and were evaluated based on the number of HI patients treated, recent experience in pediatric pancreatectomies, types and number of specialists included in multidisciplinary care, pathology expertise, and many more criteria. The organization feels confident that the six organizations are superbly equipped to handle the diagnostic, surgical, and treatment needs associated with CHI.
“COVID-19 showed the world how one disease can change people’s life. Rare disease families have always known this, and we hope that the Centers of Excellence program makes finding care easier” – Julie Raskin
More than Just a Name
The Centers of Excellence designation is not just a fancy title. This nomenclature is important for helping patients receive insurance coverage for their care. CHI plans to proactively reach out to American insurance companies and Medicaid programs to show that patients with hyperinsulinism need coverage at these centers because of the improved outcomes patients experience under their expert care. Additionally, Centers of Excellence programs will have more credence to create care guidelines that insurance companies will be more likely to cover.
While some medical centers’ applications were rejected, “it doesn’t mean there aren’t excellent physicians at those centers,” says Raskin. “It simply means they may not have all the necessary multidisciplinary components or clinical or research experience the Steering Committee set as necessary to receive the designation. “It is also our impression that a couple of excellent centers outside of the US didn’t apply because of bandwidth or because they may not have seen the value of the designation; the application process occurred during the height of the COVID-19 pandemic. We hope those centers apply during the next application cycle. Some applicants said that the process of applying, strengthened their programs by collecting important data and documenting collaboration across departments, which are important criteria for becoming a Center of Excellence.”
Congratulations to the following organizations for their Center of Excellence designation:
- Congenital Hyperinsulinism Center at the Children’s Hospital of Philadelphia, PA, United States
- The Hyperinsulinism Center at Cook Children’s Medical Center in Fort Worth, TX, United States
- Great Ormond Street Hospital Congenital Hyperinsulinism Service in London, in the United Kingdom
- Charite-Universitatsmedizin Berlin and the University Children’s Hospital Duesseldorf partnership in Germany
- Collaborative Alliance on Congenital Hyperinsulinism headquartered in Magdeburg, Germany
- Northern Congenital Hyperinsulinism Service in Manchester and Liverpool, in the United Kingdom
For more information about the program, visit: https://congenitalhi.org/the-chi-centers-of-excellence-coe-program/
Interested in learning more about how our grant programs can directly support your organization? Learn more about our current grant opportunities here: https://globalgenes.org/raregrant/