Understand the current discourse on HIV PreP on social media.
More specifically:
We extracted around 1.014.329 search data points, 100 Tiktok videos, 200 Tweets and 200 Reddit posts within the geography of the US from Feb 2021 to Jan 2023, using curated keywords and hashtags.
Using unsupervised machine learning, our proprietary in-house AI clustered linguistically related inputs into concept clusters. Our team of analysts then interpreted these clusters, teasing out nuanced discourses on the topic.
The discourse were then sized through search - based on our curated keywords. Search data was obtained within a 2-year time period (March 2021 to February 2023).
Finally, from studying the discourses, we picked apart key themes and attitudes, combined data points with other relevant information surfaced during our research, and synthesized the findings into this report.
Increasing Understanding
Discussing specifics of PrEP as a medication, from interaction with other drugs to how it actually works.
Side Effects
Concerned about and wanting to be informed of potential side effects.
Effectiveness
Wanting to understand the effectiveness of PrEP.
Accessibility
Discussing barriers to accessing PrEP from cost to insurance coverage.
Adherence
Related to dosage amounts and prescribed medication.
Safety & Risk Concerns
Wanting to understand the safety/safe use of PrEP and understanding its influence on HIV risk.
Stigma
Managing and discussing PrEP-related anxieties or social stigma – including impact on relationships.
Advice Seeking
Advice seeking to help with decision-making, especially as it relates to risk of HIV transmission while on PrEP.
The largest discourse themes related to HIV PreP are having to do with wanting an increased understanding of PreP as well as questioning the effectiveness of the drug.
With interest in the HIV prevention drug growing, there is growing discourse related to people seeking advice, whether that’s the brand of the drug or questioning the safety of the drug.
A notable dominant discourse is related to side effects of PreP – while the drug is gaining momentum, there is still plenty of stigma and misinformation about the drug, which leads many to turn online to ask questions about the pros and cons of taking the drug.
A desire to understand PrEP more deeply is a major topic of discussion online. This is everything from wanting to understand PrEP as a drug, it’s underlying mechanism, as well as different formats and brands.
Comparison between the difference between truvada and descovy is a major trending search keyword – as well as cited side effects. Queries that are more general in nature such as “what is prep” indicate interest – as well as potential lack of understanding or misconceptions about the drug.
In fact, medical mistrust and PrEP misconception is a major barrier, especially for black communities and transgender women, the latter group in particular because PrEP messaging and marketing has been especially focused on MSM communities.
Side effects is a major point of discussion as it relates to HIV PrEP. Patients turn online to gauge whether their experienced side effects are common or not.
Others gain insight from discussions on side effects to inform their decision-making, such as whether to make the switch from Apretude injection to the pill form. Additionally, others inquire about other patients experiences with side effects to inform whether or not they should start PrEP as well as what type of PrEP form seems to have the least side effects.
Users come together to discuss different side effects, from minor to major. People clearly use online forums to seek medical advice about their personal situations – though there are many comments urging them to consult doctors, not strangers.
Online discourse is filled with users wanting a more nuanced understanding of PrEP, perhaps a sign of the lack of overall awareness and misinformation about HIV prevention drugs. Questions surrounding how effective prep is as well as how to take prep effectively dominate online discussions.
Patients are also concerned about the amount of time it takes after taking PreP for it to be effective against HIV, such as whether the results are immediate or take a few days. Similarly, patients who admit to missing their PrEP regiment want to understand the impact of stopping or missing their PrEP pill. Overall, many conversations are about how to increase PrEP effectiveness, whether that is via event-based PrEP to Daily PreP.
There is also heated discussions about the impact of PrEP drugs and whether it condones risky behavior. This controversy is about whether PreP discourages people from using other preventative methods such as condoms, which leads to spread of other STDs.
While Insurers were given until January 2021 to follow a ruling that the cost of PreP should be covered by insurers, there has still been cost and accessibility issues. From lack of enforcement of the rule (ie: lab tests still being charged) to patients being unaware they don't have to pay out-of-pocket. In this context, a monthly supply of PrEP can go up to $2,000 for brand drugs like Truvada and Descovy.
Other challenges include variable coverage of the drug by insurance plans to lack of access to health care for those who are uninsured. Online, many patients ask about how to access or reveal challenges in accessing the drug. These challenges are exacerbated by accounts of frustration about the lack of knowledge surrounding PreP among the medical community – many recount experiences of doctors clearly not knowing about PrEP, or dismissing them, when they go get medical help.
PrEP discussions often revolve discussions about feeling anxious about side effects, experiencing social stigma from others, to worries about correct adherence.
There is also fear and frustration of social judgment. From PrEp ads that push out the stereotypes about members of the gay community to the widespread notion between PrEP and promiscuity – with the idea that PrEP is an excuse to engage in risky sexual behavior. Others experience this social judgment in personal relationships. Discussions such as “is PrEP a dealbreaker?” to “my partner dumped me because I’m on PrEP” reveals these social stigmas and challenges.
Lack of knowledge about PrEP within the medical community is an ongoing point of frustration directly tied to PrEP stigma. There is many accounts of cited discrimination from healthcare providers, which leads many individuals concerned that they will face homophobia if they inquire about PrEP.
PreP adherence refers to taking HIV PrEP as prescribed. Many discuss online about different dosage schemes and what to do if one forgets or misses a PreP dose.
There is clearly a strong interest in learning more about the “211” PrEP dosage method, which refers to an adherence method which involves taking PrEP around times of sex instead of once per day. Relatedly, there is interest in hearing about different online users experiences with effectiveness between “211” versus PrEP daily.
Many turn online to clarify or expand on what their doctors have said about prescribed PrEP dosages. Other topics of conversation include switching from the Truvada pill form to the Apretude shot form, and how to follow an adherence schedule that maintains effectiveness in preventing HIV.
Discourse related to the risks and safety associated with PrEP is a growing conversation topic. Patients turn online to ask questions that reveal their concerns about long and short-term safety risks with taking PrEP and balancing it with how much PrEP reduces the HIV risk.
Many questions are related to the safety of of mixing PrEP with other drugs, whether its medication that helps blood pressure to hepatitis.
Some comments highlight negative side effects with PrEP, from kidney damage to diarrhea. Simultaneously, many support PrEP despite potential side effects, drawing attention to the fact that most drugs do have side effects. In their opinion, PrEP is a relatively safe and responsible preventative measure against HIV.
Online discussions related to advice seeking about HIV PrEP and giving situational advice about personal anecdotes abound. This potential signals the lack of access to medical opinions or resources as well as the strength of the online MSM community (men who have sex with men).
Popular questions are related to specific sexual practices. For example, whether PrEP is effective for “top” or “bottom” sexual partners to how HIV transmission is impacted if one or both partners are on PrEP.
Emotional support and trust in other people’s accounts within the PrEP-taking community, is a big part of these conversations, from deciding between two PrEP brands like Truvada vs. Descovy, to seeking advice from more experienced people on how they have dealt with side effects from prescription medication.
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