On June 25th, 2021 a congressional hearing was convened by the Subcommittee of Africa, Global Health and Global Human Rights, and on the agenda was a discussion of Brain Health from a Global Perspective. A number of expert witnesses were called to testify, sharing about the impact of neurological conditions such as Autism Spectrum Disorder (ASD), Hydrocephalus, and Alzheimer’s Disease in low- and middle-income countries (LMICs). Dr. Benjamin Warf was among those asked to testify at the hearing, and share about his groundbreaking research on hydrocephalus, the development of his innovative treatment technique, and the training program he helped initiate while serving as the Medical Director of the CURE Children’s Hospital of Uganda from 2000 to 2006. Dr. Warf is a Professor of Neurosurgery at the Harvard Medical School and serves as the Director of Neonatal and Congenital Neurosurgery at Boston Children’s Hospital. In 2012, Dr. Warf received a MacArthur “Genius” grant for improving access to care and standards of that care both at home and in lower and middle income countries (LMICs).
The ranking member of the subcommittee, Rep. Chris Smith has long been an advocate for brain health – and global health in general – and is the sponsor of Bill H.R.2077 – Global Brain Health Act of 2019, which seeks to raise awareness and support for U.S. efforts to improve brain health in LMICs. This bill would help rally support and funding for the United States Agency for International Development’s (USAID) global health programs with a focus on Autism Spectrum Disorder (ASD), Hydrocephalus, and Alzheimer’s Disease.
Hydrocephalus is one of the most common neurological conditions worldwide, with as many as half a million new cases occurring each year. The occurrence of hydrocephalus is higher in LMICs where access to treatment is limited and when left untreated, hydrocephalus is a life-threatening condition. Additionally, in many countries, false and harmful beliefs about disabilities such as hydrocephalus persist. As a result, children with disabilities face stigmatization, discrimination, and physical violence as well as other abuses. The parents/caretakers of these children (especially the mothers) also face ridicule, rejection, and marginalization due to their children’s disabilities. In some cases, children are abandoned or even killed due to their condition.
The CURE Children’s Hospital of Uganda (CURE Uganda) specializes in delivering expert neurosurgical care for children with life-threatening conditions such as hydrocephalus, spina bifida, and others. Since opening in 2000, CURE Uganda has emerged as one of Africa’s leading hospitals for the treatment of these conditions and is internationally recognized as a center of excellence for pediatric neurological services. In addition to treatment, CURE Uganda also provides critical training through the CURE Neuro Fellowship Program, which attracts surgeons from around the world, including the United States. Part of the training program includes the treatment of hydrocephalus using the endoscopic third ventriculostomy and choroid plexus cauterization (ETV/CPC) procedure, a groundbreaking, minimally invasive, shunt-less technique developed by Dr. Warf.
In LMICs such as Uganda, where emergency access in the event of shunt failure is extremely limited, ETV/CPC is an especially important and life-saving procedure. However, as Dr. Warf noted during the hearing, in the years since he first began his work in Uganda, use of the ETV/CPC procedure has been gaining traction and becoming more common in pediatric centers even in high-income countries. This is a perfect example of how investments made in global health benefit everyone.
During the hearing, Rep. Smith recognized the contributions made by Dr. Warf, CURE International, and others, especially in the development of the ETV/CPC treatment of hydrocephalus, which has saved thousands of lives in Uganda and around the world. He also noted the importance of surgical training programs and the multiplying effect they have on improving the access to and quality of care for people in LMICs. Rep. Smith, as well as the other members of the subcommittee attending the hearing were enthusiastic about the testimonies delivered and optimistic about getting H.R.2077 passed. The increased funding recommended by this bill would help provide treatment for hydrocephalus and other neurological conditions to people around the world, and help advance the agenda for global surgery and global health. This support is crucial to ensuring that people are able to access the life-saving care they need and realize their full potential, whether they are in Uganda, in the United States, or elsewhere.