SILENCE = DEATH
This simple, direct, and powerful statement launched a grass roots campaign that changed the history of the HIV/AIDS pandemic almost 40 years ago. A rallying symbol of solidarity, pride, and political dissent, it shone the light on the people affected, amplifying their voices and ultimately forcing researchers, the pharmaceutical industry, and governments to react. Within 10 years, research led to the discovery of medications that, when used in combination, can control the HIV virus and restore immune health allowing millions of people to live with a life expectancy now approaching that of the general population.
U = U (Undetectable = Untransmissible)
Research has proven that people taking HIV medications with suppressed virus cannot transmit the virus to their sexual partners or babies. This understanding helps lift the burden of lifelong stigma experienced by people living with HIV. Research has also provided us with powerful tools to prevent people from becoming infected. Most recently, 6-monthly injectable pre-exposure prophylaxis (PrEP) was shown to be 96–100% effective in preventing HIV infection in diverse populations. This includes cis- and trans-women, for whom oral therapies are often not effective, who helped shape the design of these clinical trials.
Inclusion of diverse people in the design and conduct of research studies makes research better. It ensures that the interventions we develop meet the realities and needs of those affected and increases the chance that successful interventions will have real impact once implemented.
These research advances, and the effective policies and programs developed to implement them worldwide, made it possible to envision the end of AIDS by 2030.
On January 20, 2025, this dream was placed in serious jeopardy.
The US President’s rapid-fire attack on and silencing of institutions like USAID, the President’s Emergency Plan for AIDS Relief (PEPFAR), the Centers for Disease Control and the National Institutes of Health has had immediate and chilling effects. These bodies have long led the world in providing lifesaving treatment and prevention services, disseminating critical treatment guidelines and surveillance information and supporting innovative research.
Ideological and retrograde directives and policy choices are already having grave consequences. They have put HIV medication delivery in low- and middle-income countries at risk; resulted in the sudden termination of important clinical trials without thought for ethics or safety of volunteers; removed important web content referencing 2SLBGTQ+, trans- and people with HIV; and prevented federally funded staff and researchers from publishing their work and travelling to share their scientific findings. These actions have direct consequences for the lives of millions of people in the US and around the world.
Misinformation & Lack of Knowledge Kills
People need to know how and where to access services to protect themselves, get tested, and find treatment without fear. Health providers need to have up-to-date evidence-based information so they can provide the best care for all people regardless of sexual orientation, gender, race, socioeconomic, or migration status. Researchers need to be able to share information freely with colleagues and the public without fear their funding will arbitrarily be cut off. Trials of life saving medications, preventive therapies, and vaccines must not be stopped midway. The public needs to have access to reliable science-based information that is not judgmental or ideological. Science should not be censored.
SILENCE (STILL) = DEATH
If these decisions are not rapidly reversed, they will result in millions of deaths and set back research by many years. The silence must be broken. All stakeholders, be they academics, clinicians, industry, government, people with lived experience, or private citizens must stand up, together, and call out these deplorable actions for the good of us all.
CTN+ is a national network of researchers, clinicians and community members striving to advance prevention, care and ultimately cure of HIV and sexually transmitted and blood-borne infections (STBBIs) through the conduct of scientifically rigorous community informed clinical trials.
We are committed to promoting equity, diversity and inclusion in the design and conduct of clinical research, to engaging community throughout the research process and to disseminating unbiased scientific information.
We pledge to:
- Create an accessible resource centre as a repository for important study results, prevention and treatment guidelines and advice for clinicians and people living with and at risk for HIV and STBBIs.
- Work with our partners nationally and internationally to champion research that is ethical and inclusive.
- Support our researchers to disseminate their findings broadly to have optimum impact on policy and programming.
Links to access archived material from CDC webpages that may have been removed or altered can be found here.
Written By:
Marina Klein
Dr. Marina Klein is the Director of CTN+ and a Professor of Medicine at McGill University, in the Division of Infectious Diseases/Chronic Viral Illnesses Service where she is Research Director. Trained in medicine, infectious disease, microbial pathogenesis, epidemiology, and biostatistics, she is an internationally recognized expert in HIV and hepatitis C observational research and clinical trials.
