by Jeanne Marrazzo, M.D., M.P.H., NIAID Director

The power of word choice is obvious every day in my life as a researcher, clinician, colleague, patient, spouse, and friend. Language can inform, delight and inspire, but it can mislead and wound if words are not chosen carefully. At worst, language can invoke stigma, shame, and even violence, all of which undermine NIAID’s mission as part of a health agency. Our institute is responsible not only for advancing scientific knowledge, but for doing so in a way that honors the dignity, individuality, and autonomy of the people affected by the health issues we address. For this reason, I am very proud to share the updated NIAID HIV Language Guide, a thoroughly vetted resource to inform our written and verbal communications.

NIAID has long been engaged in rich and multifaceted collaborations with HIV advocates and community stakeholders—partnerships that I prize and am honored to carry forward. Among their many contributions to HIV science, our community partners ensure that our language evolves as fluidly as our knowledge of the virus itself. Through their insights, the words we choose to describe the pathogen, its effects on the body, and the people who are affected by and living with HIV, have become increasingly person-centered. This progress reflects and upholds a commitment to avoid defining people by the disease with which they live. 

Despite this progress, the scientific community often lags in adopting evolving language, and many of the terms and phrases we use today are still insensitive and disrespectful to the people we aim to serve. Harmful language undermines people’s trust in biomedical research, and language-driven stigma prevents people from seeking health services which provide benefit. Non-inclusive language perpetuates knowledge gaps, limiting our ability to fully understand the people participating in research. As scientists and public health practitioners, we cannot be cavalier about language. Our words matter.

This guide originated as a resource for the HIV field, but respectful, inclusive, and person-first language is essential in all scientific communication. To that end, I am committed to following the NIAID HIV Language Guide in my communications, and strongly encourage all NIAID staff, funded research networks, sites, centers, investigators, and partners to do the same. We will not always get it right, but we will continue to try. We must support each other in learning, hold each other accountable, and continue to adapt as terms and norms change. 

For more information about the language guide and supporting resources, please visit https://www.niaid.nih.gov/research/hiv-language-guide. Spanish and Portuguese translations are coming soon.

An HIV drug that suppresses the activity of the CCR5 receptor—a collection of proteins on the surface of certain immune cells—was associated with better renal function in kidney transplant recipients with HIV compared to people who took a placebo in a randomized trial. Study participants taking the drug, called maraviroc, also experienced lower rates of transplant rejection than those taking placebo, but the difference was not statistically significant due to lower-than-expected rejection rates across the entire study population. The findings of the NIAID-sponsored trial were presented today at the 2024 American Transplant Congress in Philadelphia. 

The CCR5 receptor helps HIV enter CD4+ T cells. Some people have a genetic mutation that prevents the CCR5 receptor from working, and either cannot acquire HIV or experience slower HIV-related disease progression if living with the virus. It has separately been observed that people with the same CCR5 genetic mutation have better outcomes following kidney and liver transplantation. The CCR5 antagonist class of antiretroviral drugs was developed to mimic the naturally occurring CCR5 mutation and is a well tolerated component of HIV treatment, but the drugs have not been evaluated as an intervention to improve transplantation outcomes in people. Furthermore, transplant recipients with HIV more frequently experience transplant rejection and elevated CCR5 activity than transplant recipients without HIV.

A research team led by the University of California San Francisco conducted a U.S.-based Phase 2 trial to assess the safety and tolerability of the CCR5 antagonist maraviroc given daily from the time of transplant onward among kidney transplant recipients, and to compare renal function of people taking daily maraviroc to those taking a placebo one year (52 weeks) post-transplant. All study participants were living with HIV and were virally suppressed on antiretroviral therapy (ART) regimens. The study randomized 97 participants to receive maraviroc or a placebo in addition to their continued ART regimens post-transplant. Of them, only 27 participants were able to complete all necessary study examinations through 52 weeks due to logistical complications from the SARS-CoV-2 pandemic. At one-year post-transplant, the mean estimated glomerular filtration rate—a measure of how well kidneys were working—was significantly higher in participants receiving maraviroc in addition to their ART regimen compared with participants receiving ART and placebo (59.2 versus 49.3 mL/min/1.73m²). The drug was safe and well tolerated. 

Four of the 49 participants taking maraviroc and 6 of the 48 participants taking placebo experienced transplant rejection, but this difference was not statistically significant given the relatively small sample size. Transplant rejection rates were lower than expected across both study groups, which the study team suggests may be a favorable outcome of the ART regimens most participants were taking. 

The addition of maraviroc significantly improved renal function in kidney transplant recipients with HIV compared to placebo. According to the authors, these findings warrant further exploration of the benefit of CCR5 antagonists in all kidney transplant recipients regardless of HIV status.

For more information about this study, please visit ClinicalTrials.gov and use the identifier NCT02741323.

Reference:

Brown et al. Beneficial Impact of CCR5 Blockade in Kidney Transplant Recipients with HIV. American Transplant Congress in Philadelphia, Pennsylvania. Tuesday, June 4, 2024.