Hydrocephalus Association Expresses Concern Over Executive Orders That Could Affect Hydrocephalus Research

The Trump Administration recently issued two Executive Orders that could have long-term consequences for hydrocephalus research, potentially impacting the health of hydrocephalus patients, particularly children. The first, issued on Friday, January 24, mandated an immediate and indeterminate pause on federal health and research agency operations and external communications, halting public health guidance, press releases, announcements, regulations, and similar activities within all divisions of the Department of Health and Human Services (HHS).

The second Executive Order, issued on Monday, January 27, called for an immediate and indefinite freeze on all federal grants and loans to institutions that do not align with the administration’s priorities. While it is not uncommon for a new administration to temporarily pause agency activities during leadership transitions and priority setting, the lack of clear guidance on the duration of these pauses and the scope of grants and assistance impacted raises significant concerns throughout the health research, medical care and patient communities.

The Hydrocephalus Association is particularly concerned about the impact of these directives on the National Institutes of Health (NIH). NIH, the leading federal entity supporting hydrocephalus research, has already postponed grant review panels and canceled external meeting attendance for staff in response to these directives. Over the past 20 years, the NIH has invested more than $100 million in hydrocephalus-focused grants, advancing research critical to developing treatments and finding a cure for over 1 million Americans living with hydrocephalus.

Disruptions to NIH operations could delay the progress of important research, as grant review panels play a critical role in evaluating future funding proposals. Additionally, the uncertainty created by these Executive Orders may present budgetary challenges for researchers and institutions, making it more difficult to plan and carry out research effectively.

“We remain steadfast in our commitment to advocating for hydrocephalus research and supporting the incredible work of scientists dedicated to finding better treatments and a cure,” said Diana Gray, President and CEO of the Hydrocephalus Association. “We call for these pauses to end swiftly so the NIH and other agencies can continue their vital work.”

It’s important to note that this pause does not impact grants awarded by the Hydrocephalus Association. We will continue to monitor this situation closely and provide updates as more information becomes available. Our priority remains clear: advancing research to improve the lives of those affected by hydrocephalus.

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