. 2025 Jul 29;41(8):373–388. doi: 10.1089/aid.2024.0117

“Sometimes They Exclude Us because of Our Age—That’s Not Right”: Perceptions of HIV Cure Research Among Diverse Long-Term Survivors in the United States

Ali Ahmed ¹, Jeff Taylor ^2,³, Sithara Deshan Diunugala ¹, Rachel Lau ¹, Joyce Ching-Jung Lai ¹, Michael Louella ^3,^4,⁵, Jeff Berry ^6,⁷, Tricia H Burdo ^8,⁹, Michael J Peluso ^10,¹¹, Lynda Dee ^5,¹², Karine Dubé ^1,^✉

PMCID: PMC12416492 PMID: 40267045

Abstract

HIV cure research has advanced, utilizing analytical treatment interruption (ATI) as a research tool alongside therapeutic strategies such as latency-reversing agents, block and lock strategies, immune-based therapies, cell and gene therapies, and combination approaches to overcome viral persistence. While promising, participation in cure trials remains limited, particularly for long-term survivors (LTS) who have lived with HIV for decades. Many LTS are willing to participate but face barriers such as age-based exclusions, comorbidities, and trial design constraints. With over half of the people with HIV in the United States aged 50 or older, addressing these barriers is crucial to designing inclusive, equitable, and representative cure trials. We conducted 32 semi-structured interviews with LTS of HIV, aged 60 years and older, recruited through community-based organizations and research networks across the United States. Participants were diverse in age, sex, gender, race, and ethnicity. We transcribed, anonymized, and analyzed interviews thematically. Most participants expressed a willingness to participate in HIV cure research, driven by a sense of responsibility and hope for future generations. However, concerns were raised about age-based exclusions from HIV cure trials, which many participants viewed as unjust given their long-term experience with HIV and commitment to finding a cure that could potentially benefit people of their age. Additional concerns included the risks of ATIs, such as viral rebound and the development of viral resistance, along with logistical challenges, including transportation and invasiveness of certain procedures. Despite these barriers, most LTS indicated they would participate in HIV cure trials if researchers addressed their concerns about safety, accessibility, and inclusion. LTS emphasized the need for transparent communication, clear informed consent, and flexible trial designs that accommodate their needs. By addressing these concerns, researchers can engage LTS more meaningfully in HIV cure research, enriching the field and promoting more inclusive and ethical study designs.

Keywords: aging, HIV cure research, long-term survivors, people with HIV, sociobehavioral research, United States

Introduction

Advances in antiretroviral therapy (ART) have transformed HIV from a fatal disease into a manageable chronic condition, significantly reducing AIDS-related mortality, including deaths resulting from opportunistic infections and complications arising from HIV-compromised immune systems.^1,2 As a result, there has been an expansion of the population of long-term survivors (LTS) of HIV,^3,4 individuals who have been living with HIV since before the modern era of effective HIV drugs, or highly active antiretroviral therapy.⁵ Lifetime survivors are those who acquired HIV at birth or as young children.⁶ Currently, more than half of the 1.2 million people with HIV (PWH) are aged 50 years or older in the United States (U.S),⁷ and this proportion is expected to rise to 70% by 2030.⁸ This aging demographic presents both opportunities and challenges for clinical research, particularly in the context of HIV cure-related trials, which frequently exclude LTS because of concerns about age and the presence of age-associated comorbidities.⁹ While LTS are often excluded from clinical trials, they remain engaged in HIV cure research through sociobehavioral studies, advisory boards, and advocacy efforts. In this study, participation refers to both formal study involvement and broader contributions, including sharing lived experiences, historical knowledge, and perspectives on emotional, mental, and spiritual well-being. While LTS face barriers in clinical trials, they are not systematically excluded from sociobehavioral research, where their insights shape ethical considerations and research priorities.

Despite the success of ART in controlling viral replication, LTS of HIV experience an array of health and psychosocial challenges.^10,11 Chronic immune activation and prolonged long-term ART exposure contribute to an increased risk of non–AIDS-related comorbidities, such as cardiovascular disease, cancers, renal impairment, osteoporosis, and neurocognitive disorders.^12–14 For example, the risk of cardiovascular disease in PWH is up to two times higher than in the general population, a disparity largely attributable to persistent inflammation and metabolic changes associated with long-term ART use.¹⁵ These health concerns, compounded by mental health issues like depression, anxiety, and post-traumatic stress, along with persistent HIV-related stigma and social isolation,^16,17 complicate LTS involvement in HIV clinical trials. As a result, LTS are often underrepresented in research efforts toward finding a cure, despite being an essential population for study. In parallel, HIV cure-related research (henceforth, HIV cure research) has accelerated the testing of innovative strategies such as latency-reversing agents (LRAs),¹⁸ block and lock methods, immune-based approaches,¹⁹ cell and gene therapies,²⁰ and combination approaches aimed at eliminating latent viral reservoirs or keeping HIV sustainably controlled off ART.²¹ Moreover, successful HIV cure cases, such as the first Berlin Patient or Timothy Ray Brown, as well as six additional individuals²² cured of HIV following stem cell transplants, heighten hopes that a cure is possible.²³ However, despite these advancements, HIV cure clinical trials frequently entail substantial risks, invasive procedures, and analytical treatment interruptions (ATIs), which can disproportionately affect or deter LTS and those with multiple comorbidities.²⁴ As a result, LTS are often excluded from HIV cure studies, raising ethical concerns regarding their representation and inclusion in the development of HIV cure strategies.

The exclusion of LTS from HIV cure research is particularly problematic given their unique experiences. LTS of HIV have lived longer than other demographic groups, and many have experienced the epidemic prior to the availability of effective ART.⁶ They have endured a prolonged burden of physical, mental, and emotional trauma, and their health outcomes are shaped by years of navigating stigma, discrimination, and limited healthcare access.²⁵ In a U.S. study with a median age of 51, older adults with HIV reported experiencing both ageism and HIV-related stigma, highlighting their compounded marginalization.²⁶ Existing studies exploring perceptions of HIV cure research have predominantly focused on younger populations,^27–29 men,^30,31 transgender women,^32,33 and key stakeholders,^34–36 leaving significant gaps in understanding the perspectives of LTS. For example, studies conducted in the Netherlands³⁷ and the U.S³⁸ assessed willingness to participate in HIV cure trials but were limited to cohorts with median ages of 38 and 49, respectively. These studies underscore the need for a more inclusive research agenda that captures the voices of LTS. Further, if or should an HIV cure become available, many believe that it should be applicable and relevant to LTS. Likewise ethical research frameworks should prioritize actively involving LTS aligning with the Denver Principles,³⁹ San Francisco Principles,⁴⁰ and the Meaningful Involvement of People with HIV/AIDS (MIPA), which have long advocated for the representation of PWH in decisions affecting their care and research.⁴¹

LTS over 60 years want to join cure studies, and often, there is no real reason to exclude them. Understanding their perceptions of HIV cure research is critical for guiding the design of ethically sound and participant-centered studies. This includes addressing practical concerns such as the accessibility of future cure-related interventions, the risks of ATIs, and the acceptability of invasive procedures and frequency of study site visits. The present study aims to address a critical gap by exploring the perceptions of LTS aged 60 years and older regarding HIV cure research in the U.S. Through in-depth qualitative interviews, we seek to understand LTS’ experiences with HIV research, their perceptions, willingness to participate in HIV cure trials, and unique barriers they may face in doing so. By exploring their perspectives, we hope to inform the development of more inclusive and ethically responsible HIV cure research, ultimately to help ensure that the needs and priorities of LTS are reflected in future HIV clinical trial designs.

Methods

Study setting and participants

We conducted interviews with LTS of HIV across the U.S using a purposive, nonprobabilistic sampling technique, focusing our recruitment on ensuring diversity by sex, gender, race, and ethnicity. We recruited LTS through personal contacts with community partners working with diverse populations and affiliated with three Martin Delaney Collaboratories for HIV Cure Research: (1) Delaney AIDS Research Enterprise (DARE) [L.D., M.L., J.T.], (2) Reversing Immune Dysfunction for HIV-1 Eradication (RID-HIV) [J.T., M.L.], and (3) CRISPR for Cure [J.B.]). We also engaged individuals affiliated with our three community-based organizations (CBOs): (1) AIDS Action Baltimore [L.D.]), (2) HIV+ Aging Research Project—Palm Springs (HARP-PS) [J.T.], and (3) The Reunion Project [J.B.]. We reached out to additional CBOs working on HIV and aging across the U.S., such as NMAC (formerly known as National Minority AIDS Council), The Well Project, and the San Francisco AIDS Foundation (SFAF), as well as investigators and clinicians known for their work on HIV, aging, diversity, equity, and inclusion. This approach allowed us to capture a broader range of diverse perspectives and experiences from LTS across the U.S. Our recruitment efforts were further supported by an institutional review board (IRB)-approved recruitment flyer (available upon request to the corresponding author).

We used a qualitative approach because the study explores understudied areas, and there is limited existing qualitative research on how to better engage LTS in HIV cure research.⁴² Through qualitative methods, we investigated deep, nuanced, and lived experience perspectives.

In the U.S., fewer women than men are living with HIV over the age of 65, reflecting historical disparities in HIV prevalence and access to care.⁴³ Initially, our study required participants to be 65 years or older, have acquired HIV before the introduction of combination ART in 1996, reside in the United States or its territories, and provide informed consent. However, to enhance inclusivity particularly for older women, we amended the protocol midway through the study, lowering the eligibility age to 60 years and removing the combination ART criterion. This revised approach proved more inclusive and improved the representation of women into the study.

Interview guide

We developed the interview guide (Table 1) in collaboration with LTS and community advisors, including coauthors, some of whom are LTS. We began by assessing participants’ previous involvement in HIV-related research. Following this, we explored their knowledge and perceptions of HIV cure research, focusing on awareness, interest in participation, and perceived barriers, including concerns about safety, age-related exclusion criteria, and logistical challenges. We further examined participants’ willingness to engage in advanced HIV cure strategies, such as LRAs, block and lock strategies, immune-based approaches, cell and gene therapies, and combination approaches. Additionally, we assessed their readiness to undergo invasive procedures, including biopsies and lumbar punctures, and the associated challenges. Finally, we solicited their views on enhancing diversity and inclusion in HIV cure trials, with particular attention to accessibility and trust-building among underrepresented groups.

Table 1.

IRB-Approved Interview Guide Perceptions of HIV Cure Research Among Long-Term Survivors in the United States

Thank you for participating in this interview. This study will help us understand how we can better engage long-term survivors in HIV cure-related research.
Introduction
How are you doing today?
Can you please tell me/us a little bit about yourself?
Have you previously participated in HIV-related research?
Knowledge and perceptions of HIV cure-related research
Have you heard of HIV cure-related research?
Do you think LTS of HIV would be generally interested in participating in HIV cure-related research?
What do you think would motivate LTS of HIV to participate in HIV cure-related research?
What do you think would be some concerns for LTS of HIV to participate in HIV cure-related research?
Do you think LTS of HIV would be willing to undergo invasive study procedures (e.g., gut biopsies, lymph node biopsies, and lumbar punctures)?
Do you think long-term survivors should be included in trials where HIV treatment is stopped?
What do you think of the age criteria that exclude LTS of HIV over 65 from participating in HIV cure-related research because of age?
Do you think LTS of HIV should be allowed to participate in the following types of HIV cure studies? Why/why not? o Latency-reversing agents (compounds that would reawaken HIV that has become dormant inside the cells) o Block and lock strategies (approaches that block reactivation of HIV in dormant cells without eliminating them, then locks them in that sleeping state) o Immune-based strategies (approaches that are aimed to strengthen the immune system) o Cell and gene approaches (approaches that are aimed to make cells resistant to HIV infection and may involve gene changes that would not be passed to your children) o Combination approaches
Diversity, equity, inclusion, and accessibility priorities for the LTS HIV community
The HIV cure research community is trying to recruit more diverse people to participate in studies.
What communities need to be included in HIV cure research? Why?
What accessibility standards could help include diverse LTS of HIV in cure-related trials?
What are some of the ways we should try to increase medical trust as it relates to HIV cure-related research?
Closing
Is there anything else you would like us to know about LTS and HIV cure research that we have not discussed?
Thank you for taking the time to answer these questions. Your participation in this interview greatly contributes to advancing our knowledge of how we can best engage diverse LTS in HIV cure-related research.

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LTS, long-term survivors.

Data collection

After participants expressed interest in the study, the principal investigator (PI) (K.D.), scheduled individual interviews. The PI provided everyone with an IRB-approved informed consent form (ICF) that explained the study’s aims, a demographic questionnaire, and sample interview guide. K.D. and J.T. conducted interviews in English using audio and/or video teleconference (Zoom) based on participants’ preferences, and ensured all conversations remained private and secure. In appreciation for their time, each participant received a $50 Visa gift card—either a mailed physical card or digital card.

Data analysis

After each interview, we securely stored audio files on a drive accessible only to our research team. We then uploaded these files to an encrypted transcription service to obtain transcripts. Three research assistants (S.D., R.L., and J.L.) reviewed each transcript to ensure completeness and accuracy by comparing them with the audio recordings. We did not return the transcripts to participants for their feedback. Because the study was exploratory, we analyzed data using conventional thematic analysis with an inductive approach.⁴⁴

We compiled all anonymized responses into a master Word document for manual coding. By closely following the interview guide, we maintained consistent questioning and organized the transcripts by grouping responses according to each question. Two team members, A.A. and K.D., independently coded the data, identifying emerging themes and subthemes through an inductive process. We did not use a pre-existing coding scheme. A.A., a post-doctoral researcher, developed the initial codebook, selected key quotations, and organized them into a table, while K.D. reviewed and refined the codes. We resolved any disagreements through discussions and reached consensus during bi-weekly virtual meetings. We believe we recruited participants past the point of thematic saturation, meaning no new information was uncovered.⁴⁵

We present representative quotes for the main themes in the results section, with additional quotes available in Supplementary Table S1.

Ethics statement

We followed all relevant guidelines and regulations, including the U.S. Code of Federal Regulations and the Declaration of Helsinki, to conduct this study. The University of California San Diego (UCSD) IRB approved our research (IRB #808882). All participants provided verbal consent, which was IRB-approved and recorded. We provided participants with a copy of the ICF before their interviews. To ensure confidentiality, we deidentified all study-related documents and transcripts and deleted the audio files after completing and verifying the transcriptions for quality.

Results

We recruited 32 LTS, with a mean age of 66.6 years (median 69) and an average of 32.7 years since their HIV diagnosis. The cohort was diverse with respect to sex and gender, with 50% identifying as cisgender men, 46.9% as cisgender women, and 3.1% as transgender women. Educational backgrounds varied, with 43.7% holding a college degree, 37.5% having some college education, and 6.3% holding a master’s degree. Racially, 53.1% of participants identified as White, 37.5% as Black, and 3.1% each as Indian, Filipino, and mixed race. Geographically, 53.1% of participants lived in the West, 25% in the South, 18.8% in the Northeast, and 3.1% in the Midwest. Participants had an average of 27.4 years of overall work experience, with 7.5 years specifically in HIV cure research (Table 2). Prior engagement in HIV cure research included involvement as research participants, as well as community advisory, advisory roles, and educational efforts.

Table 2.

Demographic Characteristics of Long-Term Survivor Participants (n = 32; United States, 2023–2024)

Characteristics	n	%
Age in years, mean (min–max)	66.6 (60–82)
Sex assigned at birth
Male	15	46.9%
Female	17	53.1%
Gender
Cisgender man	16	50.0%
Cisgender woman	15	46.9%
Transgender woman	1	3.1%
Education
Less than high school	1	3.1%
High school diploma or GED	2	6.3%
Some college, but no diploma	12	37.5%
College graduate	14	43.7%
Master’s degree or equivalent	2	6.3%
Doctorate degree or equivalent	1	3.1%
Race
White/Caucasian	17	53.1%
Black/African American	12	37.6%
Indian	1	3.1%
Filipino	1	3.1%
Mixed	1	3.1%
U.S. region
Northeast	6	18.8%
Midwest	1	3.1%
South	8	25.0%
West	17	53.1%
Years worked in their respective fields, mean (std. dev.)	27.4 (9.39)
Years involved in HIV cure research, mean (std. dev.)	7.5 (10.43)
0 to <1	15	46.9%
1 to 10	11	34.3%
11 to 20	1	3.1%
21 to 30	3	9.4%
31 to 40	2	6.3%

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Understanding and perceptions of HIV cure research

Participation in prior HIV research

We first asked LTS about their prior involvement in HIV research, and 19/32 (59%) reported participating in diverse studies, ranging from early HIV treatment trials to later-generation cure research. Many were also involved in broader health studies, such as cardiovascular and mental health research, which provided insights into how long-term HIV survival affected their overall well-being. Participants saw research as a valuable opportunity to access innovative treatments and contribute to their long-term health.

Understanding of HIV cure research

When we asked LTS about HIV cure research, responses showed a range of awareness and understanding. Some had not heard of HIV cure research at all, while others demonstrated a more nuanced grasp of the concept. Many interpreted cure research differently based on their experiences and knowledge. Some viewed it in terms of scientific breakthroughs like latency reversal, gene therapies, or strategies targeting viral reservoirs, while others questioned whether a “cure” meant complete removal of the virus or simply long-term suppression without the need for ART.

You hear a lot about HIV cure research. Is it longer-lasting ART? Is it being able to go off ART but I’m still HIV inside? Or is it completely eradicated? So, with respect to HIV cure-related research, for me, just a longer-lasting ART. – P01, Cisgender man, White

Perceptions of HIV cure research

Participants stated a range of thoughts regarding the expectations and potential for an HIV cure. They expressed hope and optimism for an eventual HIV cure. They believe that with time, researchers will find a solution, with some pointing to past successes, like the rare cases of people who have been cured, as signs of scientific progress. Having witnessed significant advancements in HIV treatment over the years, they remain hopeful that a cure is on the horizon.

HIV research is good. You know because I realize, it [a cure]’s going to come… [Y]ou just have to allow the time, and give the researchers enough time to find that. It’s there. I think it’s getting ready to walk through the door… I believe that I’m gonna live to see it. – P02, Cisgender man, Black

Some LTS were more cautious, expressing doubts about whether a full cure was realistic or achievable, especially given the risks associated with some experimental approaches like bone marrow transplants warranted for PWH with certain cancers.

I’ve seen a lot of promises come and go… it’s hard to believe we’ll get a full cure anytime soon, especially something like a bone marrow transplant. – P08, Cisgender woman, Mixed race

Others referenced past treatment experiences that led to adverse effects or failed to provide lasting benefits, reinforcing their skepticism. Some questioned the rarity of successful cures and whether ongoing research would yield broadly accessible solutions. Additionally, a few participants voiced concerns about being used as “guinea pigs” in uncertain trials.

Motivations and barriers to participation in HIV cure research

Perceptions about age criteria in HIV cure research

Participants strongly opposed age-based exclusions from HIV cure research, expressing frustration with the arbitrary 65-year age limit cutoff that has been the standard default in many HIV cure research protocols. LTS noted this was discriminatory, arguing that their decades of experience with HIV and treatment made them ideal research candidates for HIV cure trials. They resented the dismissal of their knowledge and expertise.

Absolutely. We’re a big part of the population. But sometimes they exclude us because of our age—I think that’s not right. – P25, Cisgender woman, White

We can provide historical, emotional, mental, and spiritual perspectives that they can’t get from people who’ve only recently been infected [acquired HIV recently]. We have so much to offer, and they’re just ignoring us. It’s like they’re saying, ‘You don’t matter anymore after 65,’ and that’s how society treats us, but why bring that into research? – P07, Cisgender man, Black

Many LTS expressed strong feelings that the community must advocate to change these exclusionary criteria, calling for a collective push to ensure that older PWH are not arbitrarily excluded from research that could benefit from their participation. Participants urged the HIV community to take collective action, using past activism models like ACT UP to push for change.

We should be advocating for it as a community. If there’s not a response, there are tactics, we can use ACT UP style… Where are you going to find people to fill a 300 to 500 cohort for a two-year ATI study? There aren’t that many, and you’re cutting out the ones who would do it. We know how to organize and fight for what’s right, and I think this is a fight we need to have. – P01, Cisgender man, White

Participants viewed the exclusion of LTS as a missed opportunity to gain from their unique perspectives. They believed their inclusion would enhance research and better represent the broader HIV community. Driven by a sense of duty, they saw the age firm cutoffs as dismissive of their past and future contributions to research.

I think all of us want to leave a legacy, even if it’s just through participation in research. It’s about contributing to something larger than ourselves, about making sure our experience counts. We’ve given so much to this community, and this is just another way to do that. We need to be included. – P08, Cisgender woman, Mixed race

LTS emphasized the need for more support for older participants, noting that declining physical and cognitive abilities can make study participation harder but also underscoring the importance of research on aging bodies.

I’ve been living with this virus for over 30 years. Who knows better what the long-term effects of HIV and the treatments are than us? We’re the ones who’ve been on these medications for decades. – P03, Cisgender man, Black

Given the fact that many of us are living [up] to much older ages, I think that’s a target-rich environment… Researchers can learn more about us, our aging bodies, old HIV, old virus. – P23, Cisgender woman, White

Desire to contribute and altruism

Many LTS expressed a strong desire to participate in HIV cure research, feeling a duty to “give back” after decades of survival. Their experiences during the early years of the HIV epidemic have instilled a deep awareness of the sacrifices that led to the scientific advancements they benefit from today, motivating them to contribute to future progress.

Want to give back something to the community in some way, whether it’s volunteering or speaking, or, you know, showing up [to] support groups and that kind of thing… I can’t imagine anybody who wouldn’t want to do this. – P06, Cisgender man, White

For some, this sense of responsibility was heightened by survivor’s guilt. Many LTS witnessed friends and loved ones die from HIV, and this loss drove them to honor the memory of those who died by participating in research that could benefit future generations.

Balancing risk and stable treatment

LTS varied in their willingness to take on risks associated with HIV cure research, with their openness to risk often shaped by age and life experiences. LTS, who had faced numerous challenges, were generally more willing to accept risks, seeing participation as another chapter in their journey.

I’ve done a lot of life already, you know, it’s time for me, [it’s] not that these studies are risky, but there is a difference between somebody, in my opinion, who is 25, and starting out in life… who may be risk averse, versus somebody who’s 65, and has seen life… You know, I have dealt with risk before. And I can deal with this again. – P01, Cisgender man, White

On the other hand, some LTS who had achieved stable HIV management expressed concerns about disrupting their current stable treatment regimens. They valued the predictability and effectiveness of their current treatments and were hesitant to try newer experimental approaches.

Autonomy with informed consent

LTS emphasized the importance of personal autonomy when deciding whether to participate in HIV cure research. They stressed that, as long as they are fully informed and mentally competent, they should have the freedom to make their own decisions about HIV cure research participation, regardless of age.

It’s my life. It’s my choice. It’s my decision, as long as I fully understand, and I’m not being coerced into it… Why should I not be allowed to do it, to be involved in this? I mean, is the argument that I’m too old and frail for it? If that is the argument, I want to see the proof. – P01, Cisgender man, White

Clear communication and detailed informed consent were seen as essential, particularly for invasive procedures like lumbar punctures and biopsies. LTS wanted transparent explanations about the risks, time commitments, potential pain, and benefits before deciding to participate.

I think one of the biggest things for me, I know, I will be like, ‘give me more information’. Let me, you know, read it, understand it, and then let’s see where we go from that. – P20, Cisgender woman, Black

I think they would [participate] as long as their concerns about comfort are taken into account. Like, is this going to be painful? Is it going to leave a scar? Is it just a prick and done, or will it be painful for a long time? As long as they’re really informed about what’s going to happen, I think most people would be fine. – P06, Cisgender man, White

Willingness to participate in ATIs

Some LTS were willing to participate in ATI trials, recognizing the importance of such trials for advancing HIV cure research. Those with previous experience in such trials were more open to participating again.

Yes, because the answer lies there. I would say yes. They should be included in trials where medications have stopped because therein lies the answer. So yes, I mean, if they’re going to be, if they want to be a part of cure research, then the answer is yes. – P31, Cisgender woman, Black

However, many participants expressed concerns about the risks of developing drug resistance, viral rebound, and the potential for transmission of HIV to their partners if viral loads increase during the trial. They emphasized the need for regular monitoring, rapid resumption of ART, and backup treatment options.

There should be safeguards in place… just knowing that if things didn’t work out, I still have options. The ones that worked before. At that point, you’re taking a chance, but if you’re well-informed, you feel more secure about it. – P03, Cisgender man, Black

Others highlighted the challenge of ensuring adherence to safer sex practices, noting that real-world behaviors do not always align with expectations.

A huge safety concern, you know, should be transmission. I mean, transmission is, you know, I think it is unrealistic to expect that people are going to use a condom every time they have sex, because it’s just not going to happen. – P02, Cisgender man, Black

Given these concerns, some participants suggested that study designs should explicitly include risk mitigation strategies and clear communication about partner protection options before ATI enrollment.

Concerns about invasive procedures

LTS had mixed reactions to the idea of undergoing invasive procedures, such as gut biopsies, leukaphereses, and lumbar punctures. Trust in the research team and the necessity of the procedure were critical factors in their willingness to participate. Some LTS emphasized the importance of ensuring that these procedures were essential to the study.

I’ve done lumbar punctures before, and to me, they are not that hard. They’re not that invasive. But I want to make sure that the procedure is a necessary part of the study I’m doing. I don’t want to feel like a pin cushion, just poking around for no reason. – P01, Cisgender man, White

Past experiences with invasive procedures also played a role in shaping participants’ attitudes. Those who had negative experiences, such as complications or pain, were more hesitant to undergo future procedures.

I wouldn’t do another spinal tap [lumbar puncture]. I had one, and the person doing it hit a nerve. I was on the table with a needle stuck in my spine, and they had to rush out of the room to find a doctor. That experience has definitely made me reluctant. – P04, Cisgender man, Black

Some participants’ willingness to undergo invasive procedures depended on their overall health. LTS were often more hesitant to undergo invasive procedures, particularly if they noted that their age or health status made them more susceptible to complications. Despite the potential discomforts and risks associated with invasive procedures, many LTS expressed a willingness to undergo them. For them, the contribution toward finding a cure outweighed concerns about invasive procedures.

Perceptions of specific HIV cure research strategies

We asked LTS about their perceptions of specific HIV cure strategies. LRAs aim to reactivate dormant provirus in cells harboring HIV, making the virus visible to the immune system or therapies for clearance. The block and lock strategy seeks to permanently silence HIV by locking the virus in a dormant state, preventing reactivation. Immune-based approaches focus on enhancing or modifying the immune system to better recognize and eliminate cells with HIV or block the virus from forming reservoirs. Cell and gene therapies involve making cells resistant to HIV or by directly removing HIV from the DNA, using gene editing technologies that are not inheritable by future generations. Additionally, combination approaches bring together multiple strategies, such as LRAs, immune enhancement, and gene therapy, to explore both ART-free virologic suppression and clearance cures for HIV.

Overall, LTS’ willingness to participate in advanced HIV cure research varied depending on individual preferences, readiness to accept risks, attitudes, and life stages.

Perceptions of latency-reversing agents

A few participants supported the reactivation of latent reservoirs as essential. They advocated for allowing willing individuals to participate, trusting researchers to manage the risks.

I see it as a necessary part of it… Because if you’re going to try to hit all of it, you have to deal with the dormant pools as well. – P26, Cisgender man, White

However, most LTS feared and hesitated to participate in LRA studies, which reactivate dormant HIV, due to concerns about the potential risks of reawakening the virus. They questioned the safety and uncertainty of whether the virus could be controlled again after being reactivated. The idea of reversing latency seemed counter to their long-held hopes of keeping HIV undetectable, which heightened their apprehension.

Honestly, that [latency reversal] sounds kind of scary to me. And I think a lot of people would be like, ‘Oh, hell no. I don’t want to do that.’ We’ve worked so hard to get it to where it’s undetectable. It just seems to go against everything we’ve been taught and everything we’ve hoped for. – P25, Cisgender woman, White

Do I want to take the chance of waking up the virus? You know, if there’s not a guarantee that you could put it back to sleep. What happens after you wake it up is the question. – P03, Cisgender man, Black

Some expressed understanding of the concept that reawakening latent cells might allow the body to eliminate them, potentially destroying the reservoir. They also acknowledged that hidden reservoirs in areas like central nervous system remain problematic.

Yeah, so like, in our cerebral spinal fluid and fat cells… that’s always been the kind of the gotcha with the antivirals and everything, is that once you go off the virus that’s hiding will, can come out and play. – P22, Cisgender woman, White

Participants questioned how long the virus would remain activated and whether LRAs had been sufficiently tested for safety and potential efficacy in animal models.

Perceptions of block and lock strategies

Participants displayed a range of reactions to the block and lock strategy, which aims to keep HIV in a dormant state without eliminating it. Some viewed the approach as a promising way to achieve sustained ART-free virologic control, especially if it could prevent HIV from reactivating long term, allowing them to stop taking ART. Some LTS questioned how long the virus would remain blocked and whether it could reactivate later. They also raised concerns about the virus accumulating in the body, potentially leading to worse illness if the strategy was not effective.

Yeah, I like that idea. A lot. But then again, I have to ask the question, how long will it be blocked for? So, you know, is this something that will wake up later? And what would be the side effects? – P30, Cisgender woman, White

Some LTS raised concerns about the possible side effects of block and lock agents, the long-term effectiveness of keeping the virus dormant, and whether the approach would be universally applicable.

Is this something that will wake up later? And what would be the side effects? Or how detrimental it would be to me… I would say yes [to the idea]. Then I would still have all those other questions – P32, Cisgender woman, Black

Perceptions of immune-based strategies

Participants generally noted positive feelings about immune-based approaches to strengthen the immune system to control HIV without medication. They viewed these approaches as more promising and less risky compared to other strategies, particularly if these could reduce reliance on ART.

Yeah, building the immune system is something that is a no-brainer. And if there are novel ideas about how to do that, then, once again with the education, that should be a no-brainer. – P03, Cisgender man, Black

Some participants were already focused on strengthening their immune systems through lifestyle choices and viewed immune-based strategies as complementary to these efforts.

I love the sound of that. That’s always been my strategy, especially even before I started taking the meds to do things to keep my immune system strong that weren’t pharmaceutical things. – P22, Cisgender man, White

A few LTS expressed caution regarding the oversimplification of immune-based strategies. They worried that the commercialization of immune-boosting supplements could lead people to fall prey to unproven products.

I think it will spawn an industry of supplements that people [could] fall prey to. They just buy all these things that will strengthen their immune system… I don’t know. – P08, Cisgender woman, Mixed race

Perceptions about cell and gene therapies

LTS expressed their willingness to participate in cell and gene therapies depending on factors such as how interventions are administered. They questioned whether the process would be invasive, painful, or require anesthesia, and whether it would allow them to stop medication. They also expressed a desire to know how they would feel after the intervention and how they would determine if it was working.

It [my willingness to participate] would depend upon how they would be placed into your body. Is that an invasive process that is gonna happen? Will it hurt? Will I know the difference? Will I be without medication? Will I be under anesthetic? It just opens a lot of questions of how will it be given to me? And how I will know whether it’s working or not? – P32, Cisgender woman, Black

Some participants expressed concerns about complications and past experiences with similar interventions. For example, one participant referenced the sickle cell gene therapy cure, highlighting the potential risks for those with weakened immunity. Another discussed the case of Timothy Ray Brown, acknowledging the challenges he faced during his cure process involving stem cell transplantation. Despite these concerns, however, there was optimism, with some participants expressing great hope for the potential of cell and gene approaches to provide new scientific answers.

Perceptions of combination HIV cure research approaches

Participants generally supported the idea of combination approaches in HIV cure research, acknowledging their potentially higher effectiveness over single strategies. Most expressed optimism, drawing parallels to the success of combination ART. LTS were open to participating in studies involving combination therapies, seeing them as a logical progression in the search toward an HIV cure.

We figured out over the years with the HIV meds… that the combination was what worked… I found that to be really true in my case… I didn’t have any good results until I was on a combination therapy. – P30, Cisgender woman, White

While supportive, many participants emphasized that their willingness to participate depended on the safety profile, potential side effects, and the impact of combinational approaches on their quality of life.

I think it would have to do with (1) toxicity and (2) side effects. It would really come down to what we are looking at in potential side effects. So, if we’re talking about very limited side effects, I’d probably be okay with it. – P15, Cisgender man, White

LTS also considered the impact of combination approaches on their daily lives, emphasizing the importance of regimens that would not significantly disrupt their routines or well-being. Concerns about accessibility and cost were also noted.

Overall LTS emphasized the need for clear, transparent communication regarding advanced HIV cure strategies, focusing on risks, benefits, procedures, and future affordability. They prioritized maintaining their health and avoiding unnecessary complications, particularly with LRAs, cell and gene therapies, and combination approaches. Participants wanted rigorous scientific oversight, stressing the importance of safety and long-term effects of experimental interventions. They also sought straightforward approaches and emphasized the importance of receiving comprehensive information to make informed decisions about participation in cure trials. LTS called for active involvement in research and careful monitoring throughout the trials to ensure their well-being and the success of future strategies.

Increasing diversity, accessibility and trust in HIV cure research involving LTS

Logistical barriers to participation

Logistical challenges were identified as significant obstacles to participating in HIV cure research. Many participants cited the inaccessibility of study locations, transportation issues, and scheduling conflicts as barriers.

The trials are going on in San Francisco, Chicago, New York, right? I’m unlikely to sign up for a program where I’m going to be flying to New York every week. – P26, Cisgender man, White

People who are working multiple jobs can’t always take time off during normal business hours… If you can meet them halfway, more people will participate. – P12, Cisgender man, White

LTS argued that holding trials in the evening, on weekends, or offering flexible scheduling would greatly increase participation, as many individuals work multiple low-paying jobs to make ends meet.

The more you struggle with food, housing, and working multiple low-wage jobs, the less time you have to participate in research. There needs to be more availability on weekends or evenings for people who don’t have the luxury to take time off. – P12, Cisgender man, White

Some participants suggested that providing transportation support and remote study options could help increase participation.

Social concerns and HIV-related stigma

Some LTS raised concerns about the social implications of participating in HIV cure trials, particularly related to stigma. The desire for confidentiality was a key issue, as some LTS had not disclosed their HIV status to others. The fear of being labeled or stigmatized often deterred participation, even in people who have lived with HIV for decades.

HIV is no joke, and I haven’t had a lover since oh my god, since about twelve years. Twelve years because I won’t tell anybody I got the virus. No, more than that. It’s been more than that. – P16, Transgender Woman, Black

Older individuals may need support connecting to social services to access study sites. Many still view HIV as a death sentence, unaware of treatment advances, and require reassurance to overcome stigma and outdated fears, understanding that their participation contributes to broader knowledge.

Older people might need to be connected to social services to get to a study site. And there’s the stigma. Seniors might think it’s a death sentence and don’t understand that HIV is not what it used to be. So, you must explain that to them. You’ve got to help them overcome the stigma and see that participating in research could benefit them and others. – P24, Cisgender woman, Black

Increasing diversity in HIV cure research

Many LTS stressed the need for diversity and inclusivity in HIV cure research, arguing that all communities affected by HIV should be represented. They highlighted the importance of involving people of various genders, sexual orientations, racial, ethnic, and socioeconomic backgrounds.

A cross-section of all different cultures, genders, and age groups should be included. Young people, older adults—everyone should have a chance to be part of cure research. – P30, Cisgender woman, White

Many LTS emphasized that women, particularly from marginalized groups, have been underrepresented in HIV research despite being disproportionately affected by the epidemic globally. They called for specific efforts to recruit more women into studies and to address their unique health and study needs.

There needs to be more focus on women. The early studies excluded women, or didn’t realize that HIV presents differently in women. Women of all races need to be included—Black, Latina, Native, everyone. – P23, Cisgender woman, White

Some LTS also called for more inclusion of LGBTQ+ individuals, particularly older LGBTQ+ adults and those taking hormone therapy. This group has specific healthcare needs and has also faced barriers to participating in research.

The LGBTQ+ community needs to be included, especially older women on hormone therapy. We need to understand how HIV treatments and potential cures interact with hormone therapy. – P32, Cisgender woman, Black

Several participants highlighted specific groups, such as people who use drugs, those experiencing homelessness, and people living in poverty, as crucial to include in HIV cure research. These groups face unique challenges that make them particularly susceptible to HIV, and their participation in research is essential to finding generalizable cure approaches.

Accessibility standards for including diverse LTS in HIV cure research

When asked about accessibility standards to include diverse LTS of HIV in cure research, participants emphasized the need for researchers and staff to represent the diversity of the communities they are trying to reach. Study staff who understand and relate to the experiences of their participants foster trust, making it more likely that diverse populations will engage in research.

I went to an event for Black women celebrating Black HIV-positive women [women with HIV], and they had a Black female doctor as the presenter. This made a huge difference because she understood the unique concerns of the women in that room. Representation matters because people want to feel like the person talking to them understands their struggles and experiences. That kind of connection is crucial to getting people involved in research. – P22, Cisgender woman, White

Participants highlighted social and structural barriers that limit diverse groups’ research participation. They urged outreach in homeless shelters, community centers, and marginalized communities, with a focus on personalized efforts to improve accessibility.

You have to hit the streets, literally. Go to where people are. The homeless population, those who are using drugs, they need healthcare and support too. They’re not unreachable, but you must meet them where they are. If you promise a hot meal or some other small incentive, people will come to listen. You’ll get a better sense of who’s out there and what their needs are. – P04, Cisgender man, Black

Participants indicated being more likely to take part in research if they felt safe and comfortable. Holding studies in familiar, nonthreatening environments could help alleviate the anxiety participants might have about taking part in studies. Additionally, ensuring privacy was especially important for those who have not disclosed their HIV status.

Some of these institutions where trials take place are very intimidating. People might not want to go somewhere they feel scared or uncomfortable. Holding trials in more familiar, community-based settings could help make people feel safer. Some people would rather talk about their health in a place they know, instead of some big, scary hospital. – P31, Cisgender woman, Black

Lastly, participants stressed the need to simplify the language used in research communications. Complex medical terminology can alienate individuals and hinder understanding. By using simple, accessible language and eliminating unnecessary jargon, researchers can make HIV cure studies more approachable and increase engagement.

Perceptions on building trust in HIV cure research

LTS raised concerns about historical medical abuse, especially among marginalized groups, and how it fuels mistrust in HIV cure research. They cited the U.S. Public Health Service Syphilis Study at Tuskegee’s legacy and emphasized the need to acknowledge past wrongs and uphold transparency in ethical standards to rebuild trust. LTS identified several key strategies to increase trust in HIV cure research. One of the most critical ways to build trust was through the dissemination of culturally sensitive and accurate information. There is a need to deliver consistent and clear messages about research to help people make informed decisions.

A lot of the mistrust is the lack of understanding of what research is all about… it has to be combined in a way that they understand the importance of the research from the medical perspective. – P20, Cisgender woman, Black

Participants expressed frustrations about not receiving follow-up results after participating in studies. Participants also emphasized the importance of addressing the historical mistreatment of marginalized communities, particularly racially and ethnically diverse groups. Building trust in these communities was seen as essential for increasing diverse participation in HIV cure studies, especially among those who have been exploited or overlooked in clinical trials.

You need to go into communities, not just rely on advertisements. Go to the churches, the schools, the places where people hang out. Engage with the communities where marginalized people go for healthcare. – P24, Cisgender woman, Black

Participants emphasized that trust in medical research grows through strong, long-term relationships with healthcare providers. They noted that people trust their long-term physicians and that involving trusted figures, such as past research participants, can reduce skepticism. Peer navigators and community advocates were also seen as crucial in promoting trust, as their shared experiences offer a relatable, trusted voice to address fears and answer questions.

Peer navigators… help people navigate the situation with knowledge… and it’s one-on-one usually, people who they trust. – P08, Cisgender woman, Mixed race

Discussion

To our knowledge, this is one of the first sociobehavioral studies that has explored LTS’ perceptions, willingness, barriers, and accessibility standards regarding HIV cure research participation. Our findings provide novel insights into the perspectives, preferences, and concerns of LTS, an underrepresented group in medical research, and yield rich, experience-based narratives grounded in participants’ lived experiences. We found that many LTS participants were motivated to contribute to HIV cure research. However, significant concerns about age-based exclusions were prevalent, with participants feeling overlooked despite their long history of living with the virus. While some remained hopeful about the possibility of a cure, others were more skeptical, citing disappointments in prior research. These concerns underscore the critical need to address the inclusion of LTS in HIV cure research. Ensuring their participation is vital not only for ethical reasons but also for tailoring medical interventions to meet the needs of the aging demographic of PWH in the U.S.

A notable finding from our study was the strong willingness of many LTS to engage in HIV cure research, driven by altruism and a sense of duty toward future generations. This aligns with previous studies, where PWH, particularly LTS, expressed a desire to give back to the HIV community by contributing to research.^31,46–48 However, many participants voiced concerns about the risks associated with cure-related interventions, especially the invasive nature of some procedures and uncertainties around long-term safety and efficacy. Similarly, Noorman et al. highlight how past treatment experiences shape LTS’ engagement with cure research, reinforcing skepticism about whether a cure would adequately address their long-term health challenges.⁴⁹ Like their participants, some in our study questioned whether a cure could reverse irreversible complications from HIV or prolonged ART use, influencing their perceptions of cure research risks and benefits. Current U.S. National Institutes of Health (NIH) policies advocate for the inclusion of older adults in clinical research, recognizing that arbitrary age limits can hinder scientific progress and exclude those who would benefit most from medical advancements.⁵⁰ These considerations underscore the importance of guidance from regulatory bodies, such as the U.S. Food and Drug Administration (FDA)⁵¹ and the European Medicines Agency (EMA),⁵² which emphasize the inclusion of older populations in clinical trials to account for age-related changes in pharmacokinetics and pharmacodynamics that may significantly affect drug metabolism and intervention outcomes.

Despite the willingness, past successes in HIV research sparked both optimism and caution among LTS, particularly regarding the use of ATIs, where the risk of viral rebound was a significant concern. The concerns were both medical and ethical, as viral rebound during ATIs could lead to significant health deterioration in this population.⁵³ Participants’ fears about viral rebound, drug resistance, and the emotional toll of ATIs align with the concerns reported in previous sociobehavioral studies,^27,54–57 where participants often struggled with the psychological stress of pausing ART, particularly if viral control was lost. This concern has been reinforced in the recent literature, with studies noting that psychological distress can be heightened when ART is paused and viral load rises again, after years of HIV undetectability and arduous journeys to achieve health stability among LTS.^58,59 Moreover, LTS in our study demonstrated partner protection needs during ATIs, consistent with findings from other studies conducted in the United States.^59,60 Structured strategies, including pre-exposure prophylaxis access, viral load monitoring, and safer sex counseling, were emphasized as essential to the ethical integrity of ATI trials and align with existing research on risk mitigation in HIV cure studies.^57,61,62

Alongside medical and ethical concerns, logistical barriers such as traveling, study location accessibility, and impact on daily routines emerged as significant challenges for participants. This is consistent with existing literature on clinical trial participation, where logistical challenges often hinder involvement, particularly for PWH.^29,63 A recent qualitative study by Lefebvre et al. found that the primary reasons for refusal in HIV cure-related clinical trials in France were not ATIs concerns but logistical challenges, such as frequent appointments and conflicts with personal and professional commitments.⁶⁴ Participants emphasized the need for practical support, such as transportation assistance, flexible study schedules, and remote participation options. Similar findings have been reported in studies examining barriers to clinical trial participation, where factors like financial constraints, geographic proximity, and access to transportation played a crucial role in trial recruitment and retention.^65,66

Further, LTS were divided in their willingness to engage in specific HIV cure research strategies such as LRAs, block and lock strategies, cell and gene therapies, and immune-based approaches. LTS echoed concerns that reactivating the virus could lead to a loss of viral control, reflecting fears from prior studies where the safety profile of LRAs remains an issue.^67–69 This was especially concerning for LTS who may experience immunological changes associated with aging. Cell and gene therapies, while promising, raised concerns about long-term safety and precision, particularly in relation to challenges seen in other gene therapy applications such as Chimeric Antigen Receptor (CAR) T-cell therapy in cancer.⁷⁰ Our study aligns with a prior study conducted in the U.S. where participants expressed caution regarding cell and gene therapies.⁷¹ Similar to transgender participants in Poteat et al., our participants raised skepticism toward LRAs, fearing the risks of viral reactivation.³² However, Poteat et al. highlighted concerns about mistrust and exploitation, particularly among transgender women. In contrast, LTS in our study expressed cautious hope, especially regarding immune-based strategies, which they viewed as less risky and potentially beneficial for long-term health maintenance. LTS in our study also emphasized the need for more robust long-term safety data to ensure experimental interventions could be safely applied to diverse LTS populations as the population of PWH is aging worldwide.⁷²

Another pressing theme that emerged was frustration regarding age-based exclusions from HIV cure research. Many LTS felt that their lived experiences and long-term use of ART made them ideal research candidates despite concerns about comorbidities. This frustration is also found in the literature, where experts have argued that excluding older adults limits the applicability of clinical trial findings.^73,74 There are a number of considerations with regard to this issue. First, age cutoffs often stem from concerns about comorbidities and frailty,⁷⁵ which certainly do become more common with increased age and may increase the risk of participation in HIV cure research. Concomitant medications for those comorbidities may have interactions with study drugs. Resistance mutations present in treatment-experienced LTS may affect their ability to safely receive investigational agents or may limit alternative ART options, should they be needed. There are also considerations related to the host immune response, as many HIV cure trials utilize immunotherapy approaches, which may be less effective in LTS due to immune senescence. Still, many of these factors can be present independent of age. Studies have shown that excluding older adults based on chronological age could lead to a significant gap in understanding how experimental therapies would work in a continually increasing aging worldwide population of PWH.^76–78 Beyond limiting scientific understanding, age-based exclusions raise ethical concerns. Beneficence in HIV cure research requires ensuring that people over 65 years are included in studies so they may benefit from future advancements. Failing to do so not only restricts the applicability of findings but also denies access to potential breakthroughs that could improve health outcomes in aging populations. Participants in our study advocated for removing arbitrary age cutoffs and including LTS in HIV cure trials when appropriate, emphasizing the importance of considering health and overall well-being rather than focusing solely on age, a view supported by research promoting more inclusive trial designs. Age-based exclusions also undermine opportunities to explore how age-related factors, such as immune senescence,⁷⁹ may affect responses to cure strategies.

Importantly, the need to build trust in HIV cure research was underscored by participants, who referenced historical exploitation, highlighting the enduring impact of mistrust among marginalized populations in clinical research.⁸⁰ People trust their physicians, but this is also a group that has been underrepresented in HIV cure research.³⁶ The literature supports trust-building through transparency in every part of the research process, culturally competent communication, and the inclusion of diverse research staff who can relate to the participants’ experiences.⁸¹ LTS emphasized the need for more proactive, community-based outreach, moving beyond traditional recruitment methods to meet participants where they were. Such strategies align with evidence showing that culturally appropriate and congruent outreach can significantly improve trial enrollment.⁸² For example, reports from initiatives like The Reunion Project emphasize the importance of engaging LTS through community-driven support, advocacy, and outreach efforts.⁸³ LTS expressed frustration over not receiving study results, highlighting researchers’ ethical duty for transparent, ongoing communication in clinical trials.^84,85 By improving transparency, fostering trust, and addressing logistical barriers, researchers can ensure that LTS’ perspectives are meaningfully incorporated into the HIV cure research process, ultimately enhancing both the scientific rigor and the ethical conduct of trials and including community and participant input before and after trial completion.

Ethical considerations are paramount when including diverse LTS in cure research, particularly given the potential complications associated with age, comorbidities, and social factors, which require special attention to respect for autonomy and minimizing harm. Respect for autonomy is essential, ensuring that participants are fully informed and able to provide valid consent.⁸⁶ This may require tailored communication strategies, particularly for older individuals with cognitive impairments, ensuring that their ability to participate is not compromised.^87,88 Additionally, the principle of nonmaleficence demands minimizing potential harm to participants, especially those with multiple comorbidities or complex treatment regimens.^73,89 Study designs must carefully balance risks and benefits, accounting for the specific health challenges of LTS and diverse populations.^88,90 Further, frameworks such as those used in end-of-life studies like the Last Gift program—a research initiative where PWH at the end of life provide informed consent to donate tissues posthumously, enabling scientists to study HIV reservoirs in the entire body to advance cure research—highlight the importance of continuous informed consent processes, ensuring participants’ well-being remains central throughout the research.^91–93 Integrating such safeguards can help foster participant trust and promote altruistic participation. Lastly, justice necessitates equitable inclusion of underrepresented groups, such as LTS, Black, Indigenous, and People of Color, who have historically been excluded from clinical studies. This inclusion is crucial to developing improved HIV control options that are generalizable and beneficial across diverse populations.^74,94 Addressing these ethical imperatives not only strengthens the validity of HIV cure research but also aligns with the broader goals of ensuring health equity and scientific rigor.

Table 3 summarizes the key considerations and actionable strategies for increasing diversity, accessibility, and trust in HIV cure research involving LTS that emerged from our study.

Table 3.

Key Considerations and Actionable Strategies for Increasing Diversity, Accessibility, and Trust in HIV Cure Research Involving Long-Term Survivors of HIV

Increasing diversity in HIV cure research:

Carefully consider age-based criteria for participation, focusing on overall health and mental capacity rather than excluding individuals based solely on age.

Recruit diverse participants from various gender, sexual orientation, racial, ethnic, and socioeconomic backgrounds, ensuring underrepresented groups such as women and LGBTQ+ individuals are included.

Involve populations from diverse backgrounds, such as people who use drugs, those experiencing homelessness, and those living in poverty, by addressing their unique healthcare challenges and including them in research.

Improving accessibility:

Ensure diversity among research staff and offer flexible scheduling, including evening and weekend studies, to reflect the communities being engaged and accommodate participants with low-wage jobs.

Engage in community outreach by visiting underrepresented communities where they live and gather (e.g., homeless shelters, churches, and community centers), and conduct research in familiar, nonthreatening environments.

Provide remote participation options, travel support, or decentralized research sites to include participants from various locations, especially those living far from urban centers.

Support LTS by connecting them to social services and helping them overcome stigma, while providing clear information on the benefits of participation in research.

Provide mental health support, especially for participants in clinical trials involving ATIs or invasive procedures, to address emotional challenges and encourage participation.

Simplify research communications by using clear, accessible language and eliminating complex medical jargon to make participation more accessible.

Offer incentives, like financial compensation or meals, to encourage participation, especially for economically disadvantaged individuals.

Clearly communicate the potential risks (and benefits) of different HIV cure strategies and offer balanced, easy-to-understand information to reduce apprehensions about research participation.

Fostering trust:

Acknowledge past wrongs and ensure transparency and emphasize current ethical standards to rebuild confidence.

Engage trusted community figures and healthcare providers, such as peer navigators, prior research participants, and personal physicians, in research communications and to address potential concerns in a relatable way.

Providing clear, ongoing updates about studies progress, risks like partner protections and outcomes helps build trust.

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Limitations

We acknowledge limitations in this qualitative interview study. Our recruitment methodology may have introduced sampling or referral bias by selecting individuals connected with CBOs, and as such, the sample may have been skewed toward individuals more favorable to HIV cure research. Further, we cannot determine the total number of potential study candidates who were reached (denominator). Although we successfully recruited a high number of women and participants from diverse racial and ethnic backgrounds, we were unsuccessful in recruiting Hispanic participants. Spanish-speaking PWH remain a critically underrepresented group in HIV cure research, and research in general, in the United States. Additionally, this study was conducted in English only, which may have excluded Spanish speakers and individuals who speak other languages. Participation also required access to Zoom, a computer or phone, and the ability to communicate verbally, potentially limiting involvement for individuals who are deaf, blind, or experience technological barriers. Since all participants were based in the United States, our findings may not be generalizable to other settings. While this study focuses on older LTS, we also acknowledge the importance of lifetime survivors, individuals who have had HIV since birth or a very young age. Though they were not included in the present study, their experiences represent another important dimension of HIV survivorship and warrant exploration in future research.

Conclusions

LTS of HIV represent a vital yet often overlooked group in HIV cure research. Their extensive experience with the virus and ART positions them as essential partners in the search toward an HIV cure. Motivated by a commitment to support future generations and contribute to the HIV community, LTS are eager to participate in research. However, their involvement is frequently obstructed by barriers such as limited access to information, age-based exclusions, logistical challenges, and concerns about potential risks. To create a more inclusive and effective approach to HIV cure research, it is imperative to address these barriers. This includes enhancing communication, removing arbitrary age restrictions, and designing trials that are accessible and accommodating. As we advance in our research efforts, prioritizing the perspectives and needs of LTS will be essential to ensuring that future breakthroughs benefit an extremely significant number of PWH. By fostering collaboration with this critical population, we can move closer to achieving an equitable and effective cure that is meaningful to all PWH.

Acknowledgments

The authors are indebted to all the long-term survivors who took part in this study. The authors would also like to thank the DARE, RID-HIV, and CRISPR for Cure Community Advisory Boards (CABs) and partnering community-based organizations (CBOs) who provided recruitment assistance and support for this study—in particular AIDS Action Baltimore, HIV+ Aging Research Project—Palm Springs, The Reunion Project, the San Francisco AIDS Foundation (SFAF), the NMAC (formerly the National Minority AIDS Council), and The Well Project.

Authors’ Contributions

K.D., J.T., and L.D.: Conception and design. K.D. and J.T.: Collection of data. J.C.J.L., R.L., and S.D.: Reviewed each transcript for accuracy and completeness and compared them with the corresponding audio files. A.A. and K.D.: Analysis and interpretation of the data. A.A.: Drafted the paper. All co-authors reviewed it for intellectual contents, approved the final version of the manuscript and agreed to be accountable for all aspects of the work.

Author Disclosure Statement

K.D. provides advisory services to Gilead Sciences, Inc. and AbbVie, Inc. T.H.B. holds equity and is a member of the scientific advisory board for Excision BioTherapeutics, Inc. M.J.P. has received consulting fees from Gilead and serves on a DSMB for American Gene Technologies. M.L. serves on a DSMB for the study titled “Safety and anti-HIV activity of autologous CD4⁺ and CD8+ T cells transduced with a Lentiviral vector encoding bi-specific anti-gp120 CAR molecules (LVgp120duoCAR-T) in anti-retroviral drug-treated HIV-1 infection” (PI—Steven Deeks, University of California, San Francisco).

Funding Information

This study was funded by a community-based grant shared between RID-HIV v1.0 (UM1 AI164561), DARE v3.0 (UM1 AI164560), and CRISPR for Cure v1.0 (UM1 AI164568), administered through AIDS Action Baltimore. K.D. contributed separate support from the BEAT-HIV (UM1AI164570) and R01MH126768 to facilitate data analysis and article development for this project. The RID-HIV, DARE (S.D.), and CRISPR for Cure (T.B.) and BEAT-HIV Martin Delaney Collaboratories for HIV Cure Research are supported by the following U.S. NIH Institutes and Centers: NIAID, NHLBI, NIDDK, NIDA, NIMH, and NINDS. The authors also acknowledge support received from P01 AI169609 [Smith—Leaving, Coming and Staying HIV Obligate Microenvironments (HOME)]. M.J.P. is supported by K23AI157875. M.L. is supported by the University of Washington/Fred Hutch Center for AIDS Research (CFAR), an NIH-funded program under award number AI027757 which is supported by the following NIH Institutes and Centers: NIAID, NCI, NIMH, NIDA, NICHD, NHLBI, NIA, NIGMS, and NIDDK.

Supplementary Table S1

aid.2024.0117_supplementary_table_s1.pdf^{(295.2KB, pdf)}

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Associated Data

This section collects any data citations, data availability statements, or supplementary materials included in this article.

Supplementary Materials

Supplementary Table S1

aid.2024.0117_supplementary_table_s1.pdf^{(295.2KB, pdf)}

PERMALINK

“Sometimes They Exclude Us because of Our Age—That’s Not Right”: Perceptions of HIV Cure Research Among Diverse Long-Term Survivors in the United States

Ali Ahmed

Jeff Taylor

Sithara Deshan Diunugala

Rachel Lau

Joyce Ching-Jung Lai

Michael Louella

Jeff Berry

Tricia H Burdo

Michael J Peluso

Lynda Dee

Karine Dubé

Abstract

Introduction

Methods

Study setting and participants

Interview guide

Table 1.

Data collection

Data analysis

Ethics statement

Results

Table 2.

Understanding and perceptions of HIV cure research

Participation in prior HIV research

Understanding of HIV cure research

Perceptions of HIV cure research

Motivations and barriers to participation in HIV cure research

Perceptions about age criteria in HIV cure research

Desire to contribute and altruism

Balancing risk and stable treatment

Autonomy with informed consent

Willingness to participate in ATIs

Concerns about invasive procedures

Perceptions of specific HIV cure research strategies

Perceptions of latency-reversing agents

Perceptions of block and lock strategies

Perceptions of immune-based strategies

Perceptions about cell and gene therapies

Perceptions of combination HIV cure research approaches

Increasing diversity, accessibility and trust in HIV cure research involving LTS

Logistical barriers to participation

Social concerns and HIV-related stigma

Increasing diversity in HIV cure research

Accessibility standards for including diverse LTS in HIV cure research

Perceptions on building trust in HIV cure research

Discussion

Table 3.

Limitations

Conclusions

Acknowledgments

Authors’ Contributions

Author Disclosure Statement

Funding Information

References

Associated Data

Supplementary Materials

ACTIONS

PERMALINK

RESOURCES

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