Over the last several days, many concerns have been expressed in the United States and globally about several executive actions of the new leadership administration in the United States that could negatively impact, or are impacting, the HIE community in the United States and around the world.
While it is not uncommon in the first several weeks of a new administration to see agencies pause programs, change staff, and align communications, several actions, briefings, and executive orders have already negatively impacted our community and many could have long-term consequences for HIE research, potentially impacting the health and well-being of HIE patients and families, and further stigmatizing the disability community.
Like other patient advocacy organizations, in the United States and globally, we share the many concerns expressed by HIE families, researchers, scientists, and educational and disability rights advocates regarding the impact of statements, Executive Orders, and briefings of the new United States leadership administration since January 20, 2025. We are collaborating across several national and international coalitions to develop comprehensive and effective advocacy strategies in response to the noted concerns below.
Research
HIE children and families rely on scientific advancement, research, evidence-based practices, public health programs, and life-saving and life-improving medications and therapies to survive and thrive from HIE, the 2nd leading cause of infant mortality and lifelong disability in the world.
Many scientists are on the cusp of world-changing breakthroughs for neonatal and pediatric-acquired HIE. Funding from several federal agencies such as the NIH, FDA, CDC, and DOD has been critical to advancing safe and effective interventions for this devastating diagnosis. The Neonatal Research Network through NICHD ran the multicenter therapeutic hypothermia clinical trials in the United States, translating to saving millions of babies and their brain health, worldwide. With an indefinite pause on grant reviews, and cancellation of meetings, seminars, and conferences, the science cannot move forward.
In addition, we have regularly collaborated with the FDA and other regulatory agencies worldwide over the last several years as we prepare the ecosystem in research and therapeutic advancement to meet the demand that the surge in HIE research investment is currently experiencing. In the United States there are two actively enrolling clinical trials for neonatal HIE, and several in the study design process in the United States and beyond.
Healthcare
Healthcare is a basic human right. Many of our families in the United States receive Medicaid services, either directly, or administered through service agencies, such as Early Intervention therapy services, clinic visits, medication coverage, home nursing care, medical supplies, and critically important medical care coverage for medical complexity. Proposed cuts, and a temporary freeze to funds earlier this week, have sewed chaos and fear among those who are at the deepest margins of need in our community.
In addition, public health is a fundamentally critical piece to keep families safe and healthy. Pulling the United States from the World Health Organization, removing funding from international aid programs for newborn and child health administered by USAID, and briefings containing harmful misinformation about public health, positions our already fragile children and families in a very concerning and precarious place. It also removes the United States as a humanitarian, scientific leader in the world.
Education
Many children diagnosed with HIE will require special education services due to developmental delays and disabilities. Recent Executive Orders removing programs like Diversity, Equity, Inclusion, and Accessibility (DEIA) at all federal agencies, including the Department of Education, further marginalize children and adults with disabilities, removing key guidance, programs, and services that are protected under various educational and civil rights laws.
With recent Executive Orders removing programs like Diversity, Equity, Inclusion, and Accessibility (DEIA) at all Federal agencies, including the Department of Education, this impact further marginalizes children and adults with disabilities, removing key guidance documents and programs that have been in use to administer appropriate school resources to students with disabilities, including making school environments, programs, and services more accessible and equitable. The new administration also has classified DEIA as a “discriminatory equity ideology” and has threatened to remove federal funding to schools. In addition, the promotion of School of Choice aims to divert already restricted funding away from public schools to private schools that are not legally required to provide services and resources to students with disabilities.
Disability, Accessibility, Rights & Stigma
HIE does not discriminate against who it impacts, however social and societal stigma and discrimination still happen widely against the disability community and marginalized populations. DEIA initiatives combined with anti-discrimination, educational, and civil rights laws and protections for people in the disability community have challenged the historically pervasive, harmful stigma that has existed about people with disabilities. These initiatives advance opportunities for disabled individuals to live meaningful lives as any other person living in the United States, to be included in society at all levels, improve accessibility to a historically inaccessible world, and provide educational protections, programs, and services to include students with disabilities, including in higher education and various careers.
In the wake of the horrific tragedy in the crash of American Airlines Flight 5342, we echo the pervasive shock and dismay that President Trump’s response to this loss of life was to erroneously blame individuals with disabilities, and promote this situation as the fault of DEIA hiring practices, which show no correlation. Air Traffic Controllers in the FAA must meet rigorous physical and cognitive aptitude requirements. There are many other jobs within the FAA that people with disabilities hold, and perform at high levels, including disabled veterans. It is unconscionable that leaders would use this disaster as an opportunity to attack DEIA efforts and specifically people with disabilities. Furthering stigma with disability, combined with actively dismantling DEIA programs and services that protect and serve the disability community, is reprehensible.
Hope in Action: Moving Forward
Hope for HIE reaffirms its commitment to the global HIE community actively elevating the unmet needs of our impacted children and families through advocacy and action, cultivating empathy through supporting the diverse community we connect, standing with integrity for the greater good in advancing evidence-based science to prevent and improve outcomes, cultivating unity through an awareness and understanding of the various backgrounds and worldly conditions our families face, and reflecting on the state of HIE to guide decisions that benefit the global HIE ecosystem.
Hope for HIE is a part of several national and international advocacy, medical, disability, and research coalitions. We will continue these partnerships ensuring the HIE community voice is elevated and heard, fundamental human rights for all children and families are protected, and scientific advancement, research, evidence-based practices, public health programs, and life-saving and life-improving medications and therapies continue forward.
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