Narrating medicine: Experiences of HIV treatment and prevention

For almost four decades, the comprehensive human immunodeficiency virus (HIV) clinical research program at St. Jude Children’s Research Hospital has assessed effective treatment and prevention options for children and youth living with and without HIV.  While scientific publications catalog the results of the program’s studies, the impact is best described by the patients themselves.

Listening to and honoring the lived experiences of patients is an important part of medical care. The practice, called narrative medicine, is a reminder to center the humanity that might otherwise get lost. Narrative medicine integrates the patient and their human experience into the folds of medical care and clinical research.

Below are the stories of three St. Jude patients and research participants who enrolled in clinical trials to advance the treatment and prevention of HIV in youth. Due to the stigma around HIV status, all participants in this story requested anonymity. 

These individuals chose to share their personal experiences as an act of self-definition. Through art and audio produced by St. Jude with their input, they show the narrative around HIV is theirs to create.

A poet and artist, this creative decided to participate in a clinical trial he felt could change history and help people living with HIV. 

The ongoing multicenter clinical trial studies the longest-acting antiretroviral treatment regimen — two broadly neutralizing antibodies (teropavimab and zinlirvimab) delivered intravenously (IV) and an HIV capsid inhibitor (lenacapavir) injected under the skin, all three administered every six months. While the trial is ongoing and this HIV treatment option is not currently available as a standard of care, he has shown a positive response to the treatment regimen.

A future “white-coat warrior,” this healthcare provider-in-training and new cat dad chose to enroll in a clinical trial that allowed him to stay focused on his goals. 

The multicenter clinical trial assessed the safety, dosage and acceptability of long-term injectable antiretrovirals (cabotegravir and rilpivirine) administered in combination via intramuscular injection once every two months as treatment for HIV in youth aged 12 to 18. Positive results from the trial led to Food and Drug Administration (FDA) and Canada Health approval of these two antiretrovirals in youth aged 12 years and older. The approval brings a new HIV treatment option to those who may struggle with taking one oral pill every day, which is the current standard of care.

A centralizing force in his community, this advocate and newlywed participated in a clinical trial to gain access to pre-exposure prophylaxis (PrEP) and reduce his risk of contracting HIV as an act of communal care. 

The multicenter trial evaluated the safety and efficacy of the long-term injectable antiretroviral cabotegravir — administered every eight weeks via intramuscular injection — for HIV prevention as compared to an already-FDA-approved oral medication (tenofovir disproxil fumarate). The results from the trial led to FDA approval of cabotegravir as the first injectable preventative medication for HIV. The drug provides a new way to receive PrEP for those who do not want to take one pill every day.

When people living with and without HIV are provided access to humanizing health care, education, and participatory research opportunities to advance care options that directly impact them, they can begin to recreate the narrative around HIV.

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