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Science in Times of Uncertainty
United We Stand: Promoting Science in Times of Uncertainty at CROI 2025

Released: March 24, 2025

Expiration: March 23, 2026

Vincent Crisostomo
Vincent Crisostomo
Activity Information

Activity

Progress
1
Course Completed
Key Takeaways
  • Despite major advances in HIV treatment, access to care is still a major challenge for many, even for those who are not from vulnerable populations.
  • Uncertainty regarding continued access to care is a significant mental health burden for people living with HIV.

This year, the 2025 Conference on Retroviruses and Opportunistic Infections (CROI), held in San Francisco, California, took place amid significant apprehension and uncertainty. Recent actions by the United States government threatened to shut down National Institutes of Health–funded HIV research and the President’s Emergency Plan for AIDS Relief (PEPFAR), casting doubt on the future of HIV research, treatment, care, and prevention—not only in the US but worldwide.

Since its inception in 2003, PEPFAR has invested over $110 billion in the global response to HIV/AIDS. This represents the largest commitment in history, by any nation, to counter a single disease. Altogether, this funding has saved 26 million lives, prevented millions of new HIV infections, and accelerated progress in managing the global HIV/AIDS pandemic across more than 50 countries. 

As someone living with HIV since 1987, I understand that my survival is due not only to effective treatments and the insurance that covers them, but also to the scientific advancements that have made these treatments possible. These innovations continue to improve regimens and strategies for me, the approximately 1.2 million others with HIV in the United States, and the roughly 39.9 million people living with HIV globally.

Unexpected Barriers to Care
In January 2025, I refilled my prescription for my once-daily HIV treatment, a routine I have followed since switching to this regimen in 2023. Imagine my shock when I discovered that the copayment under my organization’s new insurance plan was $5000.

After making 4 to 5 phone calls over several days, the issue was resolved. Fortunately, my organization had anticipated this challenge for employees with HIV under the new plan and put mechanisms in place to cover most of the additional cost. However, my out-of-pocket expense still increased significantly despite these measures, from approximately $85 for a 90-day supply 4 times a year, to $150 a month.

Looming Uncertainties
With this experience still fresh in my mind, I felt a mix of hope and anxiety as I approached CROI this year.

Since the new US administration assumed office, there have been attempts to cut funding not just for research but also for nonprofit HIV public benefit organizations like the San Francisco AIDS Foundation, where I am a patient advocate and Director of Aging Services. Projections indicate that programs like the Ryan White HIV/AIDS Program that support low-income people with HIV and help them access and stay engaged in care, may also face funding cuts.

CROI featured dynamic and exciting presentations on the latest research in HIV treatment and potential cures, STI prevention, weight management while taking antiretrovirals, aging with HIV, and pediatric and adolescent care. Dedicated sessions addressed the unique challenges faced by women, transgender individuals, and other key populations impacted by HIV. Even so, given the current political climate, it was challenging to absorb all this information.

Many of my friends and clients, both in San Francisco and around the world, are asking what will happen if we lose access to our medications. What value do the latest findings hold for us if we cannot obtain these treatments?

These concerns weigh heavily on my mental health. They evoke memories of the 1980s and 1990s, when people with HIV were largely ignored, breeding feelings of betrayal and fear that an uncontrollable resurgence of HIV/AIDS could be on the horizon.

Save Our Science
During CROI, HIV activists in San Francisco organized a rally titled "Save Our Science," drawing more than 500 attendees. As the opening speaker, I struggled to find my voice, weighed down by my lived experience with HIV/AIDS.

However, the applause and cheers from the crowd filled me with hope and resilience, reminding me that I am not alone. Together, we stood united, representing diverse walks of life. Now, as in the past, by emphasizing community advocacy, sharing personal experiences, and addressing the unique needs of various populations, we can create a more inclusive and effective response to the ongoing challenges posed by HIV/AIDS.

In times of uncertainty, collaboration among scientific and advocacy communities is essential to support research and improve the lives of people worldwide. The commitment of activists, researchers, and healthcare professionals to fight for the rights and health of individuals living with HIV is a powerful testament to our community's strength.

Your Thoughts
How do you promote engagement and retention in care for your patients during times of uncertainty or during challenging times? Leave a comment to join the discussion!