Survey report assesses patient opinions and challenges over long-acting injectable medications for HIV prevention and treatment

Capping off its Long-Acting Injectables (LAIs) Project, ADAP Advocacy, a national nonprofit supporting HIV treatment and access, released a final report on a two-part survey of patients’ attitudes about LAIs for HIV prevention and treatment. It found that interest in LAIs is high—among the people who know about it; awareness of the medications is lower, especially for HIV prevention (PrEP) and in some communities, and there are often challenges to access.

“Over the last few years, we’ve witnessed some amazing policy work being done on long-acting injectables, but oftentimes it lacked the patient perspective, said ADAP Advocacy CEO Brandon M. Macsata. “The findings from this project serve as a starting point for ADAP Advocacy to conduct additional patient-centric research to learn more about the barriers as well as facilitators faced by patients seeking long-acting injectables."

The project was conducted in two parts—the treatment survey was done in late 2023, followed early this year by the prevention survey. Among key findings: 

87.8% of respondents said they were aware of an LAI for HIV treatment and 52.3% said they would prefer an LAI (injected every two, three or six months, depending on the medication) over a daily pill regimen. In the prevention survey, 71.4% expressed a preference for injections over pills, but 58.4% knew that there is a long-acting injectable for PrEP. Of respondents who had not known there is LAI PrEP, 42.2% said they would be interested in talking about it with a medical provider.

Resistance by private insurers and other barriers to coverage affected 27% in both surveys. In the prevention survey, two out of three said these challenges to access made them decide LAI PrEP was not for them.

Treatment survey overview

The treatment survey found that 52.3% would prefer to receive LAI treatment by a care provider or self-administered injection. (There are no self-administered LAIs, although that is an eventual goal; LAIs are intramuscular shots that must be given by a trained medical professional.) Daily oral pill-based regimens were preferred by 47.7%.

This was consistent with nearly all other demographic groups. However among women, 61.1% said they preferred pills; of individuals who were Medicaid-eligible, 68.8% chose pills.

Respondents who had not been aware of LAIs prior to the treatment survey were asked follow-up questions. Half of them said they would be open to discussing LAI treatment with a care provider, 37.5% were willing to switch from a pill to an LAI, 28.1% said they did not know, 15.6% had a fear of needles that would prevent them from LAI treatment and 12.5% said medical mistrust would keep them from LAIs.

Of the 230 who were aware of LAIs, 51.7% said they found out about them through television commercials, 22.2% through digital ads and 19.6% from print ads. 

Many respondents learned about LAIs through more informal sources: 32.6% from social media, 29.6% through word of mouth and 17.8% through internet searches. 

Some 34.8% said they learned about the medications through a local community-based organization (CBO) or AIDS service organization (ASO). However, some of the least cited information sources were social workers and case managers, at 8.3%, and public health departments, 6.5%. Respondents ages 18–35 were least likely to get their information there, 23.3% compared to 42.6% of people age 56 or older.

Overall, 26.1% said they learned about LAIs from a specialist such as infectious disease doctor; 23% learned from a primary care provider; and 4.3% got their information from a pharmacist.

Prevention survey overview

Of the 154 respondents, 58.4% said they were aware of the LAI PrEP medication Apretude; 41.6% did not know.

The 64 individuals who did not know were asked follow-up questions: 42.2% said they would be open to discussing LAI PrEP with a care provider, 28.1% were willing to switch to Apretude from a daily pill, 28.1% were worried about being able to afford the medication, 6.3% reported that a fear of needles or mistrust of the process would keep them away; 35.9 did not know how they felt about Apretude.

Of the 90 individuals who were aware of Apretude, 36.7% learned of LAI PrEP from television commercials, 15.6% from digital ads and 7.8% from print ads.

Of other information sources, 43.9% relied on social media, 36.7% on word of mouth and 13.3% from internet searches.

CBOs and ASOs were the information sources for 22.2%; 15.4% learned from a primary care provider.

Among the prevention survey participants, 10% said they were on Apretude, 58.4% were ages 36–55 and 71.4% said they would prefer injections over pills; however, 58.9% had neither researched nor attempted to access Apretude.

Participants of both the LAI prevention and treatment surveys were self-selected; recruitment was done primarily via social media. Of the 305 responses to the treatment survey, 262 participants were determined eligible, representing 38 states, the District of Columbia and Puerto Rico. Of the participants, 56.9% identified as white, 20.2% as Black, 12.2% as Latinx and 10.7% as another race or ethnicity. Self-identified males accounted for 58% of respondents; 36.3% as female, 5.7% as transgender, nonbinary. Participants skewed older, too: 44.3% were age 56 or older, 40.1% ages 36–55.

Of the 154 participants, 90 were aware of Apretude; 53.9% of them were white.

Focus groups, too

A post-survey focus group comprised of eight members was conducted for each survey. Many of the participants said they were confused by conflicting information and about different eligibility requirements for LAI drugs. Many also commented on the advertising, saying it did not represent the diverse populations affected by HIV. Participants’ experiences with their health care providers varied; some said their provider was helpful and informative while others said their provider was a barrier to accessing LAI meds.

Survey recruitment was done through social media and with help from organizations such as The AIDS Institute, Georgia Equality, HealthHIV, Human Rights Campaign and Positive Women’s Network-USA.

Positively Aware helped with recruitment through its social media and is acknowledged in the report.

The report acknowledged the project’s limitations, citing the need for improved rural and geographic, transgender and nonbinary, and youth representation. It recommended that future efforts should include more planning and strategizing for advertising and distribution of the survey tools, and better coordination with Black and trans communities.

The LAI Project received financial support from drug makers Gilead Sciences, Merck and ViiV Healthcare’s Positive Action Community Grants. 

The report, Long-Acting Injectables—Patient Access Considerations for Injectable HIV Therapies & Injectable HIV Pre-Exposure Prophylaxis, was authored by CEO Macsata, Riley D. Johnson, Marcus J. Hopkins and Jen Laws.

Read the report and executive summary here.