After talking to many HIV researchers in the community, we were shocked to learn about national budget cuts in HIV research funding as well as their overwhelming sense of frustration and uncertainty towards the changes. This insight was a common theme amongst the researchers we talked to, leading us to create a survey to quantify these impacts to better understand the depth of the issue.
Currently, over 230 National Institutes of Health (NIH) research grants related to HIV/AIDS have been terminated by the federal government (McGill). This, in combination with proposed and implemented budget cuts to public health institutions, has not only had devastating consequences for HIV researchers but created a climate of confusion and instability. Stories of the upheaval these cuts have caused - abrupt cancellations of clinical research and trials, shutdowns of important studies, layoffs and loss of resources - have been reported in news articles and through word of mouth, but not quantifiably assessed. As our community connection, researcher Dr. Susan Morgello (Mount Sinai School of Medicine) shared with us in an interview, “It's the instability that affected me the most, and the confusion on the part of our NIH contractors, because even they don’t know what’s going on.” She further elaborated that since people are losing grants overnight, unlike in 2008, “we do not have time to prepare.”
The NIH plays a crucial role in combating the HIV/AIDS epidemic, as it is the largest health research agency in the world, funding a wide variety of HIV research ranging from prevention and treatment to total cure (Glenshaw et al.). Research shows that even modest changes to funding levels can have significant effects, not only on researchers themselves but the entire research infrastructure. Decreases specifically have negative impacts on both the current year of funding and years to come, as the loss of funding creates a ripple effect impacting support for research assistants, research space, and other related expenditures (Larson et al.). It has also been shown that the ability to successfully secure funding is crucial to researcher retention, with one study reporting that NIH-funded biomedical researchers who failed to successfully compete for new funding had an average drop out time of 5 years after their first award (Haggerty and Fenton).
As HIV researchers ourselves who have the capacity to make positive change in the research community through our outreach efforts, we decided to create a survey to quantify the effects of the recent budget cuts and grant terminations to HIV research. We aim to shed light on the extent these funding cuts have disrupted HIV research and impacted the research focus and employment decisions of HIV researchers in New York City and Long Island, areas with high levels of HIV research. Our ultimate goal is to be able to publish and use the data to emphasize the importance of refunding HIV research projects and advocate for the restoration of funding at a political level.
Potential participants were identified through online sites indicating their employment and recruited via email. The only inclusion criteria is current or past participation in HIV research in New York City or Long Island. The criteria we used in our search to find HIV researchers are the following, of which satisfying one or more was adequate for inclusion in the study:
Participants will complete a survey regarding the effects of budget cuts and grant terminations to their research and career. The survey will be sent to potential participants via email and administered through Qualtrics, taking approximately 5-10 minutes to complete. All questions are optional and the participants will be made aware that participation is voluntary and their data will not be stored if they choose not to submit the form. The survey questions were specifically designed not to collect personally identifiable information.
This survey asks HIV researchers about their experiences with funding challenges and their effects on research and careers. Questions cover the type of HIV research participants conduct, their sources of funding, and whether they have faced grant terminations or budget cuts. Researchers are asked how these funding changes have impacted their research timelines, focus, staffing, access to resources, and ability to work with patients. The survey also explores how funding instability influences career decisions, such as shifting research areas or considering opportunities outside the U.S. Finally, participants are asked about their professional role, research experience, and demographics, with an open-ended section to share additional insights.
Getting our study approved by the IRB proved to be one of the most excruciatingly time-consuming parts of our project. It took nearly two months to write, submit, and finally secure approval for our study protocol. During this period, we had to go back and forth with the IRB office multiple times, making revisions in response to their feedback and adjusting details until every section met compliance standards. This was not only frustrating but also required us to plan every aspect of the study in advance with extreme precision. Because the IRB approval locks in our protocol, even the smallest change (from rephrasing a survey question to adjusting a recruitment method) would require submitting a formal amendment request and waiting for additional approval. Knowing this, we had to anticipate and resolve potential issues ahead of time, which made the process incredibly thorough but also exhausting.
To ensure our study design was effective before moving into full-scale implementation, we decided to run a pilot survey. This pilot was distributed to 100 HIV researchers and served to validate our questions and overall survey structure. The pilot data confirmed that our questions were clear, appropriate, and capable of capturing the impacts of funding cuts on HIV research. It also allowed us to fine-tune small details, giving us confidence that our finalized survey instrument was both rigorous and ready for widespread distribution.
Preliminary results from our pilot survey indicate the effects of the funding cuts are potentially wider than one might imagine. Out of the respondents currently engaged in HIV research, 27% had experienced grant terminations and/or budget cuts. These respondents reported experiencing negative effects due to these cuts such as major research project delays, alterations to their research project topics, loss of access to resources, and more. However, nearly just as alarming were the effects experienced by the 73% of respondents currently engaged in HIV research who had not experienced or were unsure of experiencing any funding cuts. Out of these respondents, 50% experienced negative impacts to their workplace’s staffing capacity such as a hiring freeze or layoffs, 62.5% experienced some level of loss of access to resources, and 75% experienced changes to their research timeline such as delays or accelerations, to give several examples. These results potentially suggest that despite not having definite cuts in funding, researchers can still feel the negative effects of funding cuts due to a ripple effect on the HIV research climate. We plan to pay careful attention to and conduct extensive analysis on the results that will come from the widespread distribution of our survey regarding the effects of funding cuts on researchers who both have and have not experienced definite funding cuts, as these preliminary results indicate that both groups of researchers could be heavily impacted.
Our preliminary results also include reports of high levels of uncertainty and concern regarding the possibility and effects of funding cuts. One anonymous researcher commented:
Looking ahead, we plan to analyze and publish the survey data to provide a clearer, evidence-based picture of how budget cuts and grant terminations are affecting HIV research in New York City and Long Island. By doing so, we aim to amplify the voices of researchers who are directly impacted and highlight the broader consequences for research progress, innovation, and public health. Our team also intends to use these findings in advocacy efforts by engaging with policymakers, community stakeholders, and funding bodies to underscore the urgent need to restore & strengthen support for HIV research even after the Jamboree. Through these combined research and outreach efforts, we hope to contribute to sustaining critical HIV-related studies and improving long-term outcomes for the communities they serve.