U.S. House Foreign Affairs Committee Holds Hearing on the Challenges Affecting Global Hydrocephalus Patients
WASHINGTON, D.C. – The House Foreign Affairs Subcommittee on Global Health, Global Human Rights and International Organizations hosted a hearing on November 20th on the global challenges facing brain health. Longtime champion of brain health reform and co-chair of the Congressional Hydrocephalus Caucus, Chris Smith (NJ-04), led the subcommittee hearing and questioning. Among the topics in discussion were the challenges facing hydrocephalus patients in developing countries and ways international aid programs can better support them.
The list of global brain health experts testifying included Gladys E. Maestre, M.D., Ph.D., Director of Alzheimer’s Disease Resource Center for Minority Aging Research at the University of Texas, Andy Shih, Ph.D., Chief Science Officer at Autism Speaks, and Yashodhara Rana, Ph.D., Associate Director of Research at the Eleanor Crook Foundation.
Benjamin C. Warf, M.D., the fourth speaker to testify at the subcommittee hearing, is a renowned pediatric neurosurgeon who was awarded the MacArthur Fellowship in 2012 and currently serves as the Director of Neonatal and Congenital Anomaly Neurosurgery at Boston Children’s, Professor of Neurosurgery at Harvard Medical School, and the Founder and Chairman of NeuroKids. Neurokids has had a monumental impact in advancing hydrocephalus patient outcomes across ten countries. The organization focuses on training neurosurgeons and other medical personnel to provide effective care to hydrocephalus and spina bifida patients in the Global South. Their efforts center on equipping local hospitals and health systems with the adequate tools to best support patients suffering from the conditions.
Although most hydrocephalus patients in the Global West have access to treatment, patients located in places like Sub-Saharan Africa struggle to access the resources necessary to treat hydrocephalus. Infections sustained by mothers during pregnancy can lead to the development of hydrocephalus. Many children and families struggle to find the necessary physicians or health systems that can effectively treat the build up of cerebrospinal fluid. Delayed or no access to treatment can lead to severe disabilities or even premature death for these children. Children and mothers affected by the condition may also face discrimination by their families or communities.
Hydrocephalus is not the only brain condition developing countries have struggled to address. Patients with Alzheimer’s and autism in the global south largely struggle to access care as well. Dr. Wharf, along with the other speakers, spoke to the importance of renewed training and assistance programs for patients and physicians in the better treatment of individuals across the globe.
The largest international federal aid program, the U.S. Agency for International Development (USAID), largely lacks international initiatives or programs that seek to strengthen care access for patients who suffer from these conditions. Chairman Smith honed in on this during the hearing, stating the importance of past legislation that would establish USAID programs specific to brain health, including international support to hospitals treating hydrocephalus in developing countries.