‘Transplanting Hope’: Experimental Stem Cell Therapy and the Political Economy of an HIV Cure

“Transplantando esperança”: Experimentações terapêuticas com células-tronco e a economia política da cura do HIV

Abstract

In this article, I use a socio-anthropological perspective to analyze the configurations and developments of the first five cases of an HIV “cure” or “long-term remission”. These unprecedented results in the history of medicine were achieved through experimental stem cell transplants, whose donors had a rare genetic mutation called CCR5Δ32/Δ32, which confers a “natural resistance” to HIV infection. More specifically, I seek to explore the role of hope in these assemblages, that is, how it is manifest in narratives and composes situated practices. To do so, I collected and analyzed the content of scientific, journalistic, and biographical documents in a cartographic exercise (2008-2023). I observed that the first “success stories” in curative therapies for HIV can be seen as events in the trajectory of the HIV/AIDS pandemic that promoted short-circuits in the status quo and sparked new techno-scientific controversies. In this context, hope reveals complex and fluid connections, mobilizes desires, creates possibilities, attracts investments, and fosters discourses about the supposed “end” of the HIV/AIDS pandemic. Finally, I suggest that this reflection is situated within a broader technobiopolitical network, which I call the “political economy of the HIV cure”.

Keywords:
HIV cure; Hematopoietic stem cell transplantation; Biomedical Technology; Hope; Biopolitics

Resumo

Neste artigo, analiso as configurações e desdobramentos dos primeiros cinco casos de “cura” ou “remissão de longo prazo” do HIV, a partir de uma perspectiva socioantropológica. Esses resultados inéditos na história da medicina foram alcançados por meio de transplantes experimentais de células-tronco, cujos doadores apresentavam uma mutação genética rara denominada CCR5Δ32/Δ32, a qual confere uma “resistência natural” à infecção pelo HIV. De modo mais específico, busco explorar o papel da esperança nesses agenciamentos, isto é, de que modo se manifesta em narrativas e compõe práticas situadas. Para este propósito, coletei e analisei o conteúdo de diferentes documentos científicos, jornalísticos e biográficos em um exercício cartográfico (2008-2023). Observo que os primeiros “casos de sucesso” em terapias curativas para HIV podem ser apreendidos como acontecimentos na trajetória da pandemia de HIV/aids, promovendo curtos-circuitos em estados de coisas e suscitando o despertar de novas controvérsias tecnobiocientíficas. Nesse cenário, a esperança revela conexões complexas e fluidas, mobiliza desejos, cria possibilidades, atrai investimentos e fomenta discursos sobre o suposto “fim” da pandemia de HIV/aids. Por fim, sugiro que esta reflexão esteja situada dentro de uma rede tecnobiopolítica mais ampla, a qual denomino de “economia política da cura do HIV”.

Palavras-chave:
Cura do HIV; Transplante de células-tronco hematopoiéticas; Tecnologia Biomédica; Esperança; Biopolítica

Introduction: A social analysis of curing HIV

Over the last fifteen years, doctors and scientists have announced the first five cases of “cure” or “long-term remission” from HIV infection. I am referring here to the cases of Timothy Brown, the “Berlin Patient” (Allers et al., 2011; Brown, 2015), Adam Castillejo, the “London Patient” (Gupta et al., 2020; Mandavilli, 2020), Marc Franke, “the Düsseldorf Patient” (Jensen et al., 2023; Highleyman, 2023), and the “New York Patient”, who has still not been identified upon his request (Jingmei Hsu et al., 2023), and Paul Edmonds, the “City of Hope - California Patient” (Johnson, 2023; Dickter et al., 2022).

These unprecedented results in medical history were achieved through experimental stem cell transplants, whose donors had a rare genetic mutation called CCR5Δ32/Δ32, which confers a “natural resistance” to HIV infection. Thus, by receiving the stem cells from the donors, the patients also became resistant to the virus they had been living with for years. Although these are unique cases, as they involve highly risky biomedical procedures that are difficult to reproduce on a wider scale, such practices and their developments offer significant aspects for socio-anthropological reflection.

In dialog with Haraway’s (1991) critical analysis, it is worth noting that the cases of cure draw attention to the multiple dimensions that compose a “regime of technobiopolitics”. For the author, the connected dimensions of information technology, biology, and economics, with their promises of a better world through technological innovations, introduce new complexities into technological interventions in everyday life and their ethical-aesthetic-political assemblages. In this way, through narratives, imaginaries and practices emerging in the medical-scientific field, the limits of societies and even of the body itself are redrawn, destabilizing the borders between the “self” and the “other”.

For more than four decades, biomedical science has been engaged in the development of preventive and therapeutic approaches to HIV. The development of an effective and scalable curative therapy could lead to significant transformations in the course of the HIV/AIDS pandemic, offering relief to the 39 million people living with the virus (UNAIDS, 2023) and generating billions of dollars in a globalized capitalist regime. However, these efforts have come up against numerous challenges, which encompass both the complexity of how HIV acts in the human body and the predominant nature of scientific governance, which is mostly centered on the development of antiretroviral therapies (Deeks et al., 2021; Dybul et al., 2021).

In relation to HIV/AIDS studies, the social sciences have prioritized the analysis of public policies related to the governance and governmentality of the disease, and have focused on activist movements (Davis and Squire, 2010; Bastos, 1998; Epstein, 2007; Parker, 2011). Notably, less attention has been paid to biomedical practices, or to the emergence of new therapeutic interventions and biotechnologies (Davis & Squire, 2010; Oliveira, 2020). This gap is even more pronounced when it comes to research that directly addresses cases of cure related to experimental stem cell transplants (Oliveira, 2023).

Among the few contributions from the social sciences to the subject of an HIV cure, are studies especially interested in the ethical implications and lived experiences of therapeutic experiments and clinical trials, and include discussions on consent and risk-benefit analysis (e.g. Dubé et al., 2017, 2021). Even less research addresses the conceptions and perspectives of various actors (participants, doctors, activists) regarding biomedical research for cure (Sylla et al., 2022), the inclusion of social analysis in this context (Grossman et al., 2016; Miall et al., 2022), diversity policies in clinical trials for cure (Dubé et al., 2022), beliefs and other healing approaches on the African continent (Moodley et al., 2019), modes of expression and uses of military metaphors in this context (Nie et al., 2016; Rennie et al., 2015), and analysis of discourses on the “end” of the HIV/AIDS pandemic (Kenworthy et al., 2018).

The absence of studies on HIV cures in the social sciences can be understood by the emphasis placed on the paradigms of the “biomedicalization of bodies” (Aggleton and Parker 2015; Rosengarten 2009) and of the “pharmaceuticalization of public health” (Biehl 2011) in the pandemic debate. In addition, we still face substantial challenges related to the dynamics of infections and associated stigmas, as well as inequalities in access to antiretroviral treatment and public policies that face crises, especially in the face of conservative governments.

In the biomedical sciences, on the other hand, there is intense debate about the development of potentially curative methods and techniques (such as stem cell transplantation, gene and cell therapy, new drugs and combined strategies), the challenges of accessing so-called “viral reservoirs”, the use of animal models, organizational resources and funding, scientific controversies, ethical procedures in clinical trials and the very notion of a cure (Barré-Sinoussi, Ross, and Delfraissy 2013; Deeks et al. 2016; Pitman et al. 2018; Kalidasan and Theva Das 2020).

According to Davis and Squire (2010), the social sciences have lacked a sustained engagement with the HIV/AIDS pandemic by focusing on technological changes in its governance and governability. There is also a lack of research that considers the global effects of biotechnologies. The authors affirm that the global and technologically advanced HIV pandemic offers valuable contributions to discussions on health and technology, addressing both empirical and theoretical aspects, and considering the complexity that marks the situation at both local and global levels.

Situating experimental stem cell therapies for curing HIV in the debate therefore represents an opportunity to explore new perspectives and contribute to the field of social studies related to techno-sciences. Incorporating these therapeutic approaches into the research agenda, however, does not mean diverting attention away from canonical discussions. On the contrary, it means simultaneously including and broadening reflections on somatic effects (Rose 2013) associated to technobioscientific practices (Fischer 2003; Franklin 2005).

Considering this still incipient discussion, the main aim of this article, the result of my doctoral research (Oliveira, 2023), is to analyze the configurations and developments of the first five cases of HIV “cure” or “long-term remission” from a socio-anthropological perspective. Inspired by various studies that highlight the implications of hope in therapeutic practices (Franklin 2013; DelVecchio Good et al. 1990; Rose 2013; N. Brown 2005, 2003; Novas 2006; Moreira and Palladino 2005), I explore how hope manifests itself in narratives and composes situated practices. After all, how have the first cases of HIV cures emerged on the technobioscientific scene? What challenges and controversies have they aroused? How does hope manifest itself and how does it promote different assemblages?

In the next section I will present the research methodology, which was developed using a cartographic approach over the course of four years. I will then explore the narratives and practices of different agents that shape the evidence of the first cases of HIV cures, highlighting the different techniques developed and their relationship with the technobiopolitical regime. I then discuss the role of hope in the context of experimental stem cell therapies for curing HIV. I discuss how hope mobilizes desires, creates possibilities, attracts investments, and fosters discourses about the supposed “end” of the HIV/AIDS pandemic. I then suggest that this reflection be situated within a broader technobiopolitical network, which I call the “political economy of the HIV cure”. Finally, I present some concluding remarks on the entanglements between life, science, and politics.

Cartographing biotechnological landscapes

The way that I conducted the research that led to this article (Oliveira, 2023) is aligned to the proposal to conduct a “mapping of the present” (Rose 2013), to explore the devices that conform to “emerging life forms” (Fischer 2003; Franklin 2005) in the context of experimental stem cell therapies for curing HIV. To this end, I approached cartography as a concept (Deleuze and Guattari 2011) and research-intervention method (Passos and Barros 2015). In this way, the research was guided by a set of clues, with a willingness to think about and with the effects of the process on the investigated object itself, on the researcher and on the results obtained.

In this sense, and inspired by different approaches in science and technology studies (Haraway 2018; Latour 2000; Rose 2013; Stengers 2002), more precisely, I carried out what I characterized as a “cartography of biotechnological landscapes” (Oliveira, 2023). In other words, I seek to account for both the continuities and the changes that have shaped the development of curative interventions and biotechnologies for HIV on different scales, traversing institutions, experiences, political projects, and scientific practices. Although this cartography is attentive to the contingencies of the present, its objective lies precisely in recognizing the openings and instabilities of the futures that are thought of and practiced, with the management of life, bodies, and subjectivities as the horizon.

To make this cartographic undertaking operational, I adopted the construction of an “archive-laboratory” as my methodological strategy. The archive-laboratory combines an effort to rethink the role of the archive beyond the exercises of power (Foucault, 2008a). Thus, I support the decolonial, anti-racist, and queer initiatives that seek to carry out “de-archiving” projects. De-archiving is, above all, a practice of resistance against the politics of silencing and erasing histories.

Unearthing cases of HIV cure allows exploring other possibilities of contact with multiple medical, scientific and personal realities (Mol 2002). This archive goes beyond simply conducting an inventory of stories, people or objects that supposedly lie in time and space. It is a living form in constant movement that reveals openings, unites dispersed elements, and promotes relationships that are often unpredictable. The laboratory is precisely the place where collective agency takes place, driven by experimentation and invention, and where new technologies are being gestated (Latour 2000).

The idea and practice of the archive-laboratory allows both locating the effort to build an agency of heteroclite materials and to highlight the existence of interventions in these materials. To curate the materials that compose this archive, I conducted processes of collection, triage, analysis, and translation. These expressions, in turn, were inspired by common activities in the techno-scientific context. Corresponding procedures were adopted by Thompson (2013) in her research in the field of reproductive technologies and stem cells.

The processes of collection and triage are related. While collecting allows gathering a wide range of materials, triage involves selecting these materials based on their relevance to the research purposes. The collection involved searching for, surveying, collecting and gathering bibliographic and empirical materials that, at first glance, demonstrated relevance to the research. The triage stage involved pre-analysis, selection and organization of the material collected.

To locate material on cases of HIV cure or long-term remission, I conducted searches in consolidated scientific databases (Scopus, Web of Science and Scielo), consultations without charge on the internet and automated mapping of key terms on Google. In this search process, I used the following key terms: “hiv AND cure”, “woman AND hiv AND cure”, “cura AND hiv”. As I came into contact with the different stories, I began to add alerts with the names of the doctors and patients involved in the procedures. These alerts allowed including new material and continuous updating over the course of the four years of research.

The survey included materials in Portuguese, English, Spanish, German and Dutch, which were organized in spreadsheets. The main criteria for the triage of the materials were correspondence with the theme, originality (being more than a replication) and the extent of the content (containing interviews with researchers and/or patients, photographs and videos). As a result, 136 articles were collected relating to 5 cases of HIV cure or long-term remission. The complete database is available at the Unicamp Research Data Repository (REDU) (https://doi.org/10.25824/redu/YAI83E).

Most of the material comes from journalistic sources (58.8%), including texts (n = 41; 30.1%) and interviews given by doctors, scientists, and patients involved in the cases (n = 39; 28.7%). This is followed by newsletters published by medical and scientific institutions (n = 13; 9.6%) and materials presented and published at scientific congresses (n = 12; 8.8%). Scientific articles published by the scientists involved in the cases amounted to 9 documents (6.6%), as did personal accounts, letters, and published comments (n = 9; 6.6%). Social networks directly related to the cases were also located (n = 6; 4.4%). Finally, there are 2 documentaries, 2 memorials and 2 scientific meeting reports (1.5% of the total each), and 1 published book (0.7%).

To analyze the materials, I used the thematic content analysis technique (Bardin, 1977) with the support of the ATLAS.ti 9 software. In other words, my procedure involved disassembling the materials to make new assemblies in thematic categories, to then conduct a comparative analysis of the data. However, instead of considering the analysis by software to be complete, I used it to produce clues to be followed in the labyrinth of the archive-laboratory. The research was thus open to experimentation that could contribute to the development of creative analytical approaches. This allowed exploring unconventional paths and seeking out new perspectives, broadening the possibilities for reading and understanding the data.

Finally, I think it is important to highlight a movement that permeated both the composition process and the analysis of the materials in the archive-laboratory: translation. The notion of translation has been used by some authors in the social studies of science and technology (e.g. Callon, 2008; Latour, 2000) to refer not just to a change of vocabulary or transposition from one language to another, but to a process of becoming. This process concerns the creation of connections between different agents, seeking to reveal a situated reading of the world and modifying it to some extent, according to different degrees of interest.

Throughout the research, I was able to engage in different translation processes to cartograph “in action” (Latour 2000) the experimental medical science dedicated to curing HIV. First, I had to translate the medical grammar itself, to re-present its content in different terms. I then undertook the task of translating materials from different languages into Portuguese (mother tongue), either completely or in excerpts considered relevant to the analysis and writing process. Finally, it was necessary to translate the practices and experiences lived by different agents, which required an effort to create a cohesive narrative capable of uniting elements that were both unique and dispersed.

Five cases among forty million

The first cure

In 2008, hematologist Dr. Gero Hütter and other collaborating doctors from the Charité University Hospital in Berlin presented the first case of “long-term HIV remission” after an experimental therapeutic intervention involving hematopoietic stem cell transplantation (via bone marrow) at the Conference on Retroviruses and Opportunistic Infections (CROI). (Hütter et al. 2008). This is a procedure that has already been established in medical practice for the treatment of advanced cancers, the state of health in which the patient found himself. However, there was one aspect that made the case unique: the donor’s stem cells had a homozygous genetic mutation, called CCR5Δ32/Δ32, which confers a form of “natural resistance” to HIV infection.

The patient was Timothy Ray Brown, a gay man in his 40s, a US citizen living in Berlin. Brown, or the “Berlin Patient”, as he became known to the media and the medical-scientific community, had been living with HIV for more than a decade and was diagnosed with acute myeloid leukemia in 2006, a type of cancer that if left untreated can quickly lead to death (T. R. Brown 2015). Hütter, although not an HIV specialist at the time, identified in Brown’s clinical status the opportunity to test the hypothesis of CCR5Δ32/Δ32 stem cell transplantation to induce remission of both the cancer and HIV (Engel 2015).

After two years, including a second transplant, Brown had the CD4+ T-cell count of a healthy adult of his age and HIV remained undetectable in viral load tests (Allers et al. 2011; Hütter et al. 2009). However, between enthusiasm and skepticism, HIV experts urged caution with expectations. Further tests would be needed before the word “cure” could finally be used without raising doubts. In the years that followed, Brown was submit to extremely precise tests in search of signs of HIV in his body (T. R. Brown 2015, 2018). The results, published in internationally recognized scientific journals (Hütter et al. 2009; Allers et al. 2011; Yukl et al. 2013), made it clear to the medical and scientific community that this was indeed the first case of an HIV cure.

Another element, as central as the publication of articles in scientific journals and presentations at conferences, is related to Timothy Brown’s testimony and active participation throughout the process. At the end of 2010, he decided to give up his anonymity, and began to grant interviews, sharing accounts of his experience and taking part in medical and scientific events. He thus began a long journey in HIV cure activism. He became an activist not only by donating his cells for clinical research, but also by dedicating himself to helping groups of patients living with HIV and people who had lost loved ones to AIDS (T. R. Brown 2015, 2018).

Dr. Hütter’s life also changed in the years following the publication of his results on Timothy Brown. Initially ignored, then celebrated and later adapted, the influence of his research oscillated. Surprisingly, the Charité Hospital’s transplant program was shut down after budget cuts. The pioneering program, which was the first of its kind to cure a person of HIV infection, was discontinued and Hütter dismissed from the institution (Holt 2014). He is currently Medical Director at the DKMS Collection Center, the hematopoietic stem cell donor bank he had sought to locate potential donors for Timothy Brown.

For experts in the field, Timothy Brown’s case has highlighted a “proof of concept” about the cure for HIV, that is the practical confirmation of a conceptual formulation hitherto considered unattainable (Hütter et al. 2009; Cohen 2011; Hütter 2016). In addition, the case “raised hopes” that gene and cell therapy strategies could one day cure the disease (Schoofs 2008). However, it should be noted that the therapeutic procedure carried out on Brown was aggressive and risky, leading to long-term side effects. Stem cell transplantation requires a technologically sophisticated hospital infrastructure and a highly qualified medical team. Moreover, the procedure is extremely expensive, making the search for a cure inaccessible to the vast majority of people living with HIV.

Timothy Brown’s HIV cure illustrates the “struggle for credibility” (Epstein 1996) in the context of HIV/AIDS. Since the publication of the first article on the case the legitimization of the results met resistance, both as a scientific fact and as a pragmatic reality. The hegemonic conception of the incurability of the disease contributed to the controversy surrounding the cure. While some fought to turn the claim into fact, others remained suspicious and questioned the discovery. This controversy reflects the unstable nature of experimental biotechnology and the uncertainties regarding its efficacy.

Brown’s voice in the HIV cure debate suggests a unique place to understand how arguments are structured, how scientific information is disseminated, how experiences are constructed and how supporters are gathered. His form of activism, although individualized, required a powerful means for participating in science. In the context of “evidence-based medicine”, he showed us that other evidence, produced by those who have experienced science in practice, is also relevant (Fleischer 2022). Timothy Brown passed away on September 29, 2020, at the age of 54, due to the return of his leukemia. He remained cured of HIV until the last days of his life.

Reproducing the experiment

In the years that followed, at least 12 other new experimental therapeutic interventions were conducted in an effort to reproduce the Berlin case (Hütter, 2018; Oliveira, 2023). But it wasn’t until March 2019, during CROI, that a new wave of enthusiasm was raised about what could be the second case of an HIV cure. A group of researchers, led by microbiologist Ravindra K. Gupta from the University of Cambridge, carried out a therapeutic procedure similar to that of Timothy Brown. The aim was to achieve remission of stage 4 Hodgkin’s lymphoma, a type of cancer of the lymphatic system, and of HIV in the patient. Some sixteen months after stopping antiretroviral therapy, laboratory tests were unable to identify the presence of HIV in his body (Gupta et al. 2019).

In 2020, the “London Patient” introduced himself to newspapers as Adam Castillejo, a 40-year-old gay man from Venezuela living in London. As he said in an interview, his desire was to follow in Timothy Brown’s footsteps in activism for a cure and become an “ambassador of hope” (Mandavilli 2020). In the same year, after further sensitive tests and examinations, the doctors and scientists involved in the case presented the “evidence for an HIV cure” in scientific journals (Gupta, Peppa, Hill, et al. 2020). This second case confirmed that a cure for HIV was possible, although still considered difficult to achieve, according to experts.

Also at CROI 2019, a medical-scientific team presented another case of HIV remission in a man after transplanting stem cells from a donor with the CCR5Δ32/Δ32 mutation, at the University of Düsseldorf, Germany (Jensen et al., 2019). The first results of the procedure had been presented at the 2016 CROI in Boston, USA (Kobbe et al., 2016). Like Timothy Brown, the patient underwent a bone marrow transplant at the age of 43 to treat his acute myeloid leukemia. His antiretroviral therapy for HIV was discontinued in November 2018.

The “Düsseldorf Patient” gave his first interview only three years after the 2019 CROI to a Dutch newspaper (Sedee 2021). At the time, he introduced himself as Marc, a gay, married man living in a small town in Germany. In February 2023, the first scientific article on the case was published, detailing the evidence of a cure (Jensen et al. 2023). After the article was published, Marc Franke decided to “come out as cured” for good, as POZ Magazine reported. One of the reasons for sharing his story, he told the magazine, was “to support HIV science and get more people to become donors” (Highleyman 2023).

In February 2022, a presentation by scientists from the United States at CROI once again stirred up the media and the medical community. According to the report (Hsu et al. 2022), a black woman (who requested to not be identified) received a stem cell transplant to treat her acute myeloid leukemia and HIV infection. In March 2023, more details about the case were published in an important scientific journal (Hsu et al. 2023). Seeking remission of her leukemia and HIV, the “New York Patient” underwent the transplant in August 2017. But unlike previous cases, the stem cells for the so-called “haplo-cordon transplant” came from two sources: from the peripheral blood of a healthy adult relative, with the role of rapidly restoring her blood cell population to reduce infectious complications; and from the umbilical cord blood of an unrelated CCR5Δ32/Δ32 newborn, to provide long-term blood replenishment (Hsu et al. 2023).

Since then, after stopping her antiretroviral treatment and sensitive tests found no virus with replication potential, the scientists and doctors involved in the case affirmed that this is a case of “remission and possible cure of HIV” (Hsu et al., 2023). Now, “she basically had a new HIV-resistant immune system,” said Dr. Yvonne J. Bryson, a specialist in pediatric infectious diseases at the David Geffen School of Medicine at the University of California and one of the study’s collaborators (Highleyman 2022a).

For the medical-scientific community, the case was considered emblematic because both the therapeutic technique used and the sex and racial origin of the participant mark a significant step in the development of a more extensive HIV cure. The CCR5Δ32/Δ32 mutation is rare, but umbilical cord blood banks may provide a previously untapped resource. In addition, studies suggest that HIV infection progresses differently in women than in men. But although women account for more than half of the world’s HIV cases, they are only 11% of the participants in experimental research and clinical cure trials (Mandavilli 2022).

The fifth and final case of which I became aware during the course of my research was announced in August 2022 during the 24^th International AIDS Conference (Dickter et al. 2022). The “City of Hope patient”, identified in this way in reference to the hematological cancer research and health center where the procedure was carried out in the United States, was described as a 66-year-old white man from Southern California. As well as being older than the others, he had been living with HIV the longest, since 1988.

In early 2019, at the age of 63, the patient underwent a stem cell transplant through bone marrow, using cells from a donor with the CCR5Δ32/Δ32 mutation, as part of his treatment for acute myeloid leukemia. More than three years after the transplant and more than 17 months after stopping antiretroviral therapy, no evidence of the HIV virus with ability to replicate was found in his body. The leukemia also remained in remission.

In March 2023, Paul Edmonds, the person behind the codename “City of Hope Patient”, decided to share his journey in a first interview with a news channel (ABC News 2023), alongside his partner. He then gave further interviews to major newspapers. In these accounts, Paul emphasized that he had seen many of his friends die of AIDS and was highly stigmatized after being diagnosed with HIV. He reaffirmed that his motivations for sharing his story publicly were “to bring hope”, “to be an inspiration” and “to honor those who didn’t survive” (Corrêa 2023; Marquez 2023).

As in the case of the “New York Patient”, the doctors responsible for Paul Edmonds’ treatment do not yet use the term “cure” to describe his case. For now, he is considered to be in “long-term remission” from HIV. To consider them “officially” cured, more time would be needed. From the scientists’ perspective, both cases are also considered opportunities to provide clues to help researchers develop more widely applicable approaches to curing HIV (Highleyman 2022b).

The new cases of “cure” or “long-term remission from HIV” point to continuities and discontinuities in experimental therapies since the case of Timothy Brown. The procedures have become less aggressive and use more diversified technologies, expanding the sources of stem cells beyond bone marrow - to the use of peripheral blood and umbilical cord blood. To a certain extent, diversification has also occurred in the patient profile. HIV cure, however, remains an unstable concept, despite the results achieved with the reproducibility of the Berlin case.

A very small proportion of people living with HIV could undergo a hematopoietic stem cell transplant. This procedure is only prescribed for patients with hematological cancers and when alternative therapies have failed. As mentioned, the technique is very risky. Experts therefore consider it unethical to subject patients to these aggressive treatments to remove the virus, since there are effective and less dangerous antiretroviral drugs that keep HIV under control. But the fact that this method cannot be applied directly at the moment does not mean that the strategy is not achievable in the long term, as some scientists argue (Mouzo 2023).

These first “success stories”, although isolated and difficult to reproduce on a wider scale due to the high risks involved in the procedure, can be seen as events in the trajectory of the HIV/AIDS pandemic. This is because they have disrupted the status quo and sparked new controversies on the technobioscientific scene. As a result, there has been a renewal of hope regarding the development of curative therapeutic approaches and new lines of research have emerged. Although stem cell therapies often require personalization, thus limiting their availability as a resource and their reproducibility, they have become increasingly explored. The idea of a cure for HIV has become a real and achievable possibility, challenging previously established scientific discourses.

The political economy of the HIV cure

“Transplanting hope”

The expression “transplanting hope” was used in the title of the first journalistic text that covered the case of Timothy Brown, written by journalist and activist David Evans (2008). This expression sought to address both the biotechnological dimension of stem cell transplantation, as well as the importance of cultivating hope and acting with caution in the face of enthusiasm in the search for a cure for HIV. In this sense, and in view of the prominent place of hope in the context of experimental stem cell therapies for the cure of HIV, I believe that the topic requires more careful attention.

Various authors in the social sciences have drawn attention to the presence, meanings and effects of hope in therapeutic contexts, especially in the last three decades with the advances of increasingly molecular and personalized biotechnologies (Franklin 2013; DelVecchio Good et al. 1990; Rose 2013; N. Brown 2005, 2003; Novas 2006; Moreira and Palladino 2005). For these authors, hope is not a purely “natural”, “predefined” and “static” affection, but is produced through different discourses, with narratives and actions (repeated and ritualized) that are always contingent in the context of contemporary technobiopolitics.

In a study of oncologists at Harvard University teaching hospitals in the United States, DelVecchio Good et al. (1990) examined the role of hope in cancer treatment and research. The authors noted that the emphasis on the “message of hope” in the “war on cancer” has driven the development of oncology and generated debates about the efficacy and meaning of hope in clinical practice. The very funding of cancer research has also been shown to be dependent on this perspective, since it is based on a view of the disease as potentially curable. For patients, hope is a force that can affect their quality of life, as well as their social and psychological responses to cancer.

As DelVecchio Good et al. (1990) suggest, these micro-political processes require a broader look. In reality, they encompass an extensive network composed of medical institutions, clinical practices, patients and their families, narratives, therapeutic practices, imaginaries, norms for disclosure and expectations of a cure. The authors called this diffuse and difficult-to-capture network the “political economy of hope”, precisely because it is hope that connects these multiple agents and assemblages.

Novas (2006) sought to broaden and deepen the concept of the political economy of hope. To do so, he analyzed the various types of collaborative links established between pharmaceutical companies and organizations that defend people with genetic conditions or diseases. According to him, in the contemporary experience of illness, the trust and hope placed in scientific progress stands out especially in situations of despair or near hopelessness. Hope, in this context, relates to a grammar of survival.

The language of hope, according to Novas (2006), uses a vocabulary similar to that of scientific discovery, expressing a desire to overcome obstacles, transcend limitations and explore new horizons. “Having” or “living” in hope means taking an active stance towards the future so that the possibilities and potential inherent in the present can be realized. Hope can thus structure the lives of people and families affected by illness. Moreover, hope is both individual and collective, since it connects biographies, shared aspirations for a better future and broader social, economic, and political processes.

Hope, by involving interaction between the present and the future, and requiring both individual and collective action to be realized, is aligned with the formulation of strategies. To make hope a reality, it is necessary to coordinate and manage the actions of individuals and groups to make a desired future a reality. In this political economy, scientific knowledge, activism, fundraising and raising awareness about a particular disease play a significant role in the quest to achieve goals (Novas 2006).

Novas (2006) points out that a central aspect of this process is how collectively shared ideals try to “shape” the field of biomedical research. In this context, the political economy of hope marks a significant transformation in contemporary technobiopolitics. This is because people affected by illness have become important authorities, engaged in promoting the health and well-being of individuals and communities. These people contribute directly to the production of biomedical knowledge and its economic valorization, while simultaneously developing new norms concerning the conduct of medical research. In this way, personal experiences become broader political issues.

In this context, in an article that discusses the debates triggered by the clinical trial of a new therapeutic approach with stem cells to treat Parkinson’s disease, Moreira and Palladino (2005) argue that contemporary biomedicine is shaped by two apparently irreconcilable organizational logics: the “regime of truth” and the “regime of hope”. However, these logics are not mutually exclusive, as they feed off each other and influence each other’s composition and meanings.

The “regime of hope” can be characterized as the optimistic view that new and more effective medical treatments are always emerging and being tested, they are always in the pipeline. More specifically, research and development processes are justified by the promise of finding new curative approaches to serious diseases. This promise implies constant postponements to stabilize the “identity of the therapy”, its components and effects. Agents often conceive of the patient as someone who is trying to free themselves from their physical condition, yearning for innovative solutions. The main foundation of this regime is based on capital, the reproduction of which requires a belief in the future, rather than resignation or investment in the present (Moreira and Palladino 2005).

The “regime of truth” implies a commitment to what is known, as opposed to what could be. In this context, we find technicians who ensure the quality of therapies, institutions that evaluate costs (such as funding agencies), pharmaceutical companies, and others. These agents are considered healthcare consumers, interested in evaluating the advantages and disadvantages of pharmacological and surgical approaches, considering criteria such as efficacy, risks and costs associated with each available option. This regime implies a constant critical review of new approaches, in an effort to understand their initial claims, clinical failures and ethical issues (Moreira and Palladino 2005).

The “point of reference” common to these opposing and interchanging regimes is subjectivity, according to Moreira & Palladino (2005). This same centralized dichotomy is even more evident in the reflections of Giorgio Agamben, Nikolas Rose and Paul Rabinow on the processes of embodiment and biopolitical subjectivation. For the latter, the current embodiment of the “I” must be understood as constantly undergoing a process of erasure, becoming increasingly indistinguishable from life itself (Rose 2013; Rabinow and Rose 2006). Agamben (2002), for his part, sees this equation, which he calls “naked life”, as deeply disturbing, but also, paradoxically, as the key to “countering the grip of power” (Foucault 1999).

N. Brown (2005) also draws attention to the regimes of hope and truth in the context of biomedicine, especially in the debate on genetics. According to him, at the end of the twentieth century, it was possible to observe a significant strategic transformation, in which the debate on biotechnology moved from a discourse of authority anchored in facts and evidence (regimes of truth), to debates conducted through grammars and abstractions focused on hope, expectations and the future (regimes of hope). The author characterizes this process as a shift from “authority to authenticity”.

In this new context, biotechnological hopes are located in mutual tension with the despair of patients with serious illnesses facing the imminent crisis of a threatened personal future. Hope in this place presents the possibility of some potential future resolution. This resolution, in turn, functions as a narrative bottleneck, an essential temporal transition point through which bodies travel narratively from the present towards the future. And, of course, the definition of this obligatory passage is influenced by powerful competitive dynamics between various networks, each presenting parallel aspirational hopes, although they are often mutually exclusive (N. Brown 2005).

This approach is similar to Latour’s (2004) discussion concerning “matters of fact” and “matters of concern”. The purpose of criticism is not simply to dismantle current facts and question their veracity, reducing them to nothing; instead, criticism aims to transform facts into issues of interest that have a latent potential, a future possibility that requires careful understanding. Thus, regimes of hope are always intertwined with facts (N. Brown 2005).

The first case of an HIV cure rekindled hopes in the medical and scientific community and became a matter of fact and interest. Achieving a cure for HIV, in a context where antiretroviral treatment is used as standard therapy, has shown that it is possible to achieve the result that has been so coveted for decades. As well as being perceived as a “proof of concept” by scientists, Timothy Brown was also described as a “personification of hope.” (Hofmann 2011). This characteristic was echoed by the other participants in experimental research who achieved sustained remission from the virus. Adam Castillejo, the “London Patient”, for example, presented himself as an “ambassador of hope”.

Inspired by Franklin (2022), transplants themselves can be seen as “biotechnologies of hope”, as they offer the promise of hope, sometimes even more than the “successful” result itself. In this context, the regimes of truth and hope are complexly intertwined in a political economy. Curative therapeutic approaches have paved the way for a field considered promising, which creates new possibilities amidst a situation of incurability, generating enthusiasm and expectations. At the same time, therapies are linked to the search for scientific knowledge and concrete evidence to support the efficacy of these treatments, which brings with them skepticism and challenges to their legitimization.

Different actors, such as HIV specialists, activists, and the scientific establishment itself, questioned the legitimacy of the cases. Groups assessed the quality of the procedures, analyzing their advantages and disadvantages, considering the effectiveness, risks and costs involved. Skepticism was most pronounced in the case of Timothy Brown, the first to be cured in the face of the certainty that HIV was incurable. Thus, overcoming the “incurability paradigm” is a challenge for this collective interested in the current state of affairs.

The regime of hope plays an important role in this context. Both the participants in the trials and the scientists and doctors depend on hope, even though the experiment often raises doubts about the results of the treatment. In a broader context, people living with HIV and the community in general place their hopes in these scientific advances, looking forward to a possible cure that will bring about a significant transformation in their lives. In this way, hope drives ongoing research efforts.

In short, “transplanting hope” implies a continuous exchange between truth and hope, in which the search for scientific proof is intertwined with the desire for a promising solution. However, it is important to balance these regimes to avoid unrealistic expectations and guarantee the integrity of science. Although there has been promising progress in stem cell research for HIV, it must be recognized that a definitive cure has not yet been achieved. Caution with “communities of promise” (N. Brown 2003) and transparency are key to providing accurate information on the current state of medical science, the challenges faced and realistic expectations.

The effect$ of hype

In 2011, the year in which the scientific article reporting Timothy Brown’s “evidence for a cure” was published (see Allers et al. 2011), there was a consensus among the members of the International AIDS Society (IAS) that a cure intervention was a high priority for people living with HIV and necessary to control the pandemic. At that time, the IAS convened a group of more than 40 international scientists specializing in HIV/AIDS to develop a scientific research strategy for a cure. In addition to scientists, activists, representatives of the pharmaceutical and biotechnology industries, regulatory and funding agencies from around the world were also consulted (Deeks et al. 2021).

According to what the members of the IAS emphasized in the document that resulted from the initiative (Deeks et al. 2012), the cure achieved in Timothy Brown highlighted the possibility that had hitherto been considered unattainable and aroused interest in studying curative interventions in the clinic. In addition to the relevance of basic and applied research for a universal cure, the ethical challenges that permeate the aspiration for a cure were also highlighted. In this respect, the group drew attention to the fact that clinical procedures for healing would involve many risks and probably few benefits for the first participants.

At the time, two broadly defined approaches to curing HIV were considered by the group: the elimination of all HIV-infected cells (a sterilizing cure); and the generation of effective host immunity to HIV that would result in lifelong control of the virus in the absence of therapy, despite not achieving complete eradication of HIV (a functional cure) (Deeks et al. 2012). The strategies developed by the IAS scientific group have been refined over the years. New documents have been organized and published in Nature Medicine, in 2016 (Deeks et al. 2016) and 2021 (Deeks et al. 2021).

The most recent strategy (Deeks et al. 2021) incorporates analysis of more than 150 studies and contributions from interested parties around the world through online consultations and a questionnaire. The document makes concrete recommendations for cure research priorities in basic, translational, clinical, behavioral, and social sciences. These latter axes had not been highlighted in the first document. The main objectives outlined are: to better understand HIV reservoirs; to measure HIV reservoirs; to understand the control mechanisms of the virus; to target proviruses; to target the immune system; to boost cell and gene therapies; to include children in research; to integrate social and behavioral sciences, as well as the ethical aspects of cure research.

According to the IAS group, a cure for HIV must be safe, effective, and affordable. In this sense, emphasis is placed on equity, representativeness, scalability, and meaningful community involvement in research. To this end, the institution also supports the establishment of an international multidisciplinary research alliance and the global coordination of existing HIV cure consortia. The group believes that a cure could overcome the limitations of antiretroviral therapy, curb the spread of new infections, reduce stigma and discrimination, and be a sustainable financial solution for controlling the pandemic (Deeks et al. 2021).

Also in 2011, the US National Institutes of Health (NIH) called for proposals for a collaborative grant of US$8.5 million a year to boost the search for a cure for HIV, and several high-powered consortia applied. The NIH then added another $4.5 million to research funding by announcing new grants for the development of therapies aimed at long-term interruption of interrupting the use of antiretrovirals. The Bill and Melinda Gates Foundation, the California Institute for Regenerative Medicine, and the Foundation for AIDS Research also awarded grants for research related to the search for a cure (Cohen 2011).

A decade later, according to a report issued by Global Advocacy for HIV Prevention in collaboration with the International AIDS Society (AVAC and IAS 2023), US$ 439.8 million dollars were invested in this field in 2021. This amount represents a 30.3% increase over the US$ 337.4 million invested in 2020, and a significant five-fold increase above the US$ 88.1 million invested in 2012. On the other hand, research funding for prevention decreased by 12.8% and for vaccines by 9.2% during the period.

In 2021, most investments, came from the public sector, totaling $362.2 million. The United States, predominantly through the NIH, was the leading contributor of public funding. The main funders, in addition to the US, included the Canadian Institutes of Health Research, the European and Developing Countries Clinical Trials Partnership, the National Health and Medical Research Council, the California Institute for Regenerative Medicine, the Italian Ministry of Health, the Instituto Superiore di Sanità and Unitaid (AVAC and IAS 2023).

In addition to public funding, philanthropic entities, such as Aidsfonds, amfAR, the Bill and Melinda Gates Foundation, the Campbell Foundation, the Instituto Pasteur, Sidaction and the Wellcome Trust, provided US$ 40.8 million to research. Industry funding totaled US$36.7 million. This figure, however, is probably underestimated considering the low return from companies, as AVAC and IAS warn (AVAC and IAS 2023). The data show that the search for curative approaches to HIV has not attracted much interest from the major pharmaceutical companies and other related private institutions.

In terms of geographical distribution, in 2021, investments in research for a cure for HIV infection came almost exclusively from countries in the global north: Australia, Canada, the European Commission, France, Italy, the Netherlands, Spain, Switzerland, the United Kingdom and the United States. Over the last ten years there has been consistent investment from these countries, as well as Belgium and Cuba (AVAC and IAS 2023).Figure 1 shows data on investments in research and development for an HIV cure for the period 2012-2021, broken down by country.

Figure 1
HIV Cure Research & Development Investments by Country, 2012-2021.

For the first time, the report was able to evaluate the phases of the research funded: basic research (38%), preclinical (40%), clinical (19%), social/behavioral (3%) and advocacy and policy (0.2%) (AVAC and IAS 2023). The vast majority of research, therefore, is concentrated in the basic and pre-clinical areas. A recent survey carried out by the Treatment Action Group (TAG) revealed that clinical research was concentrated on Phase I and Phase II studies, although there were also observational and epidemiological trials. Approximately 10% of these trials were carried out in African countries, focusing heavily on pediatric studies (TAG 2024).

Another recent TAG report found a disconnect between participants in cure research and the demographics of people living with HIV. For example, only 6% of research sponsors who reported participant data were located in Africa, even though 68% of people living with HIV in the world are on the continent. Similarly, 54% of people living with HIV are cis women, but they represent only 20% of participants in cure research. Finally, less than one percent of trial participants are trans people (TAG 2023).

According to the AVAC and IAS report (2023), there is growing recognition that research is needed in sub-Saharan Africa to ensure that a cure is available to all. The expectation is that the establishment of the public-private HIV Cure Africa Acceleration Partnership (HCAAP) will enable wider involvement and facilitate the rapid implementation of any successes in low- and middle-income contexts (AVAC and IAS 2023; Dybul et al. 2021). In addition to the HCAAP, there are two other major collaborative projects underway aimed at developing curative therapeutic approaches for HIV: the International Collaboration to guide and investigate the potential for HIV cure by Stem Cell (IciStem), in Europa, and the Martin Delaney Collaboratories for HIV Cure Research (MDC), in the United States.

IciStem was established in 2014 with the support of the American Foundation for AIDS Research (amfAR), which has provided 1.56 million euros in funding. The project includes European researchers from different fields (hematologists, virologists, immunologists) who are dedicated to curing HIV through hematopoietic stem cell transplants and gene therapy. Among the members are Drs. Gero Hütter, Ravindra Gupta and Björn-Erik Jensen - researchers responsible for the curative approaches used for Timothy Brown, Adam Castillejo and Marc Franke. In practice, the researchers develop and monitor clinical trials of patients living with HIV who need a stem cell transplant. The project is also currently supported by Aidsfonds (IciStem 2022; Wensing et al. 2019).

The Martin Delaney Collaboratories for HIV Cure Research (MDC) is the main program of the US National Institutes of Health (NIH) dedicated to promoting scientific research into a cure for HIV. MDC was launched in July 2011 with funding from three collaborating projects: CARE, DARE and defeatHIV. In July 2016, the program was expanded to include three additional collaborators - ELIEVE, BEAT-HIV and I4C. In 2021, the program was expanded to include a total of 10 collaborators - CARE, DARE, BEAT-HIV, I4C, REACH, ERASE-HIV, CRISPR for Cure, PAVE, RID-HIV and HOPE. These acronyms are particularly interesting because they refer to care, daring, insistence, reach, erasure, creating a path, and hope. The NIH has awarded approximately US$ 53 million in annual funding over the next five years to the 10 MDC organizations (NIH 2022; REACH 2023). The cases of cure of the New York patient and Paul Edmonds, the City of Hope patient, are linked to these projects.

Considering the strategies for managing knowledge, techniques, people, institutions, desires, norms and tissues, I understand that collaborative projects for curing HIV can be understood as forms of governance and governmentality (Foucault 2008b) initiatives aimed at curing HIV. This is because they are initiatives that interlink public management and the management of the community, through techniques of knowledge-power that produce and regulate subjectivities, bodies, and behaviors in effective policies.

In addition, the documents and initiatives aimed at curing HIV reveal, especially in the most recent research, a model of clinical research management that Epstein (2007) has called the “inclusion and difference paradigm”. According to the author, this concept encompasses two objectives of medical research: the inclusion of members of various groups who are generally under-represented in studies and clinical trials, and the measurement of differences between these groups in relation to the effects of treatment, disease progression and biological processes. In this technobiopolitical paradigm, medical research is redefined as an area in which diverse political problems can be addressed, encompassing issues such as the nature of social justice, the limits and opportunities of citizenship, and the meanings of equality and difference in both biological and social contexts.

Finally, I think it is important to note that during the same period as the “race” to cure HIV, other international institutions and programs, such as the World Health Organization (WHO) and the Joint United Nations Program on HIV/AIDS (UNAIDS), also argued that actions capable of leading to the end of the HIV/AIDS pandemic are a global health priority. However, scientific research aimed at curing HIV does not seem to be the priority in these cases, but expanding access to diagnosis and antiretroviral treatment. The “end of AIDS” by the year 2030 has been committed to by the 193 member countries of the UN, as part of the third Sustainable Development goal which aims to ensure a healthy life and promote well-being for all people at all ages, and is one of the 169 targets for achieving the 17 Sustainable Development Goals. (UNAIDS 2015; WHO 2016).

In 2010, UNAIDS announced for the first time its strategy of “getting to zero” between 2011 and 2016 (zero new infections, zero AIDS-related deaths and zero discrimination). In December 2013, UNAIDS established a set of targets in dialogue with “stakeholders” (people living with HIV, scientists, doctors, the pharmaceutical industry, among others) for the scale-up of HIV treatment beyond 2015. The so-called “90-90-90 treatment target”, set at that time sought to significantly improve access to HIV diagnosis, treatment and care, and to achieve effective viral suppression. The expectation was that by 2020 90% of all people living with HIV would know their HIV status, 90% of all diagnosed people living with HIV would receive sustained antiretroviral therapy, and 90% of all people receiving antiretroviral therapy would have viral suppression (UNAIDS, 2015). Finally, the 2016 UN General Assembly High-Level Meeting on Ending AIDS, held in June 2016, officially adopted the political declaration to “end” the HIV/AIDS pandemic by 2030 (Kenworthy, Thomann, and Parker 2018).

According to Kenworthya, Thomannband and Parker (2018), many HIV/AIDS experts and activists now find themselves at a particularly “strange” juncture in the response to the pandemic. On the one hand, there are more reasons to be optimistic than there have been in at least a decade. Access to treatment has expanded in many regions around the world, renewing hopes that the 90-90-90 targets can be achieved, even in countries with limited resources and generalized epidemics. On the other hand, there are significant threats to continued success. Even though effective antiretroviral treatments have been available for more than 20 years, with increased access to them in many countries, almost half the people living with HIV worldwide still do not have access to treatment.

Global funding for HIV-related health, which stagnated after the 2008 financial crisis, seems to have settled into a state of semi-permanent instability, with donors frequently changing priorities and funding modalities. Added to this are the growing nationalist and conservative movements around the world that further threaten global commitments to HIV funding. According to the authors, while the decade of 2000 was marked by discourses about an “out of control” pandemic and an “emergency policy” that justified activism and exceptional actions, the decade of 2010 was clearly marked by declarations about the possibility of achieving an “AIDS-free” generation (Kenworthy, Thomann, and Parker 2018).

According to the authors, the discourse on the “end of AIDS” is likely to result in two significant changes in HIV policy. The first is a reduction in donor support for long-term treatment, especially for the social and health systems that make this continuity possible. The second is a strong emphasis on short-term technical solutions, highlighting a “biomedical turn” that would have significant impacts on civil society, health systems and the effective future of the pandemic (Kenworthy, Thomann, and Parker 2018).

The “biomedical turn”, according to the authors, refers to a kind of technobioscientific “triumphalism” that is increasingly dominant in relation to HIV treatment and prevention. This in turn promotes the idea that effective interventions, based on privatized and technological processes, and in some cases supposedly more expensive, are the solution, neglecting the deficit of long-term support for lifelong antiretroviral treatment (Kenworthy, Thomann, and Parker 2018).

This biomedical turn is part of a wider trend in global health, which has seen a significant increase in focus on efforts to eradicate and eliminate diseases such as polio and malaria. Organizations such as the Gates Foundation have consistently embraced technological advances as a strategy to achieve new eradication and elimination goals. This trend is moving in several directions at once. It includes, for example the Towards an HIV Cure Initiative, supported by the International AIDS Society (IAS) (Kenworthy, Thomann, and Parker 2018).

However, there is a big discrepancy between rhetoric and reality, especially in relation to the lived experiences of researchers studying the pandemic around the world. While biomedical science and official discourse increasingly emphasize the imminence of the end of AIDS, researchers in the social sciences and public health highlight the complexity of the pandemic and the persistent barriers to achieving this goal. They point out that, for those on the front line of the fight against the pandemic, the end of AIDS seems to be a much more distant possibility, something that is disconnected from the realities faced in the daily battles to confront HIV (Kenworthy, Thomann, and Parker 2018).

N. Brown (2003) analyzed the hype generated by biotechnologies with their promises based on scientific progress, or what he calls the “political economy of biotechnological expectations”. Like Franklin (2022), he pointed out that the hopes initially placed in a biotechnology are rarely proportional to the actual future results. For Brown, to a certain extent, the intense emphasis on the future is crucial for exploring the many potential benefits embedded in biotechnology research and discourse. However, exaggerated enthusiasm has contributed to difficulties in the processes of legitimizing biotechnologies. In this sense, hype could be understood as a trap that brings down the hopes embedded in it.

The emblematic case of Timothy Brown, the “Berlin Patient”, inaugurated a technobioscientific “race” to cure HIV. This race has mobilized experts, raised millions in annual research funding, promoted partnerships and inspired institutional strategies. Among the pitfalls of the cure hype, the current challenge is to balance scientific practices with maintaining funding and a more inclusive and diverse management model.

This set of events that entangle the HIV cure and the end of the HIV/AIDS pandemic are not isolated phenomena. Rather, they make up a wider network in the technobiopolitical regime that I will call the “political economy of the HIV cure”. This network involves different agents, assemblages and perspectives related to curing HIV, consequently giving rise to new ethics. In the political economy of the HIV cure, hope transcends the past and the present, projecting itself into the future. As events unfold, we see the proliferation of new processes of governance and governmentality, highlighting the intersection between health and disease, the management of life and death, as well as scientific recognition and lucrative business opportunities in an expanding field.

As elements of a political economy mobilized by hope, therapeutic approaches to curing HIV contribute to the transformation of biological materials into resources that generate “biovalue” (Novas 2006; Waldby 2002), which are converted into information or techniques with the justification of improving human health. In this sense, cases of cures have driven the creation of biobanks that store the CCR5Δ32/Δ32 genetic mutation. (e.g. IciStem 2022). This form of “capitalization of hope” is based on attempts to realize the potential of biomedicine, transforming biological materials into resources to generate health and wealth (Novas 2006).

Final considerations: The HIV cure between life, science, and politics

In the afterword to the book A política da própria vida [The Politics of Life Itself],Rose (2013, 350) argues that “we are neither at the beginning nor at the end, but in the middle of the ‘mutations’ that are taking place in the entanglements between life and politics”. In this process, many hopes embedded in practices will be dashed, fears will prove unfounded and various obstacles and complications will arise. In addition, surprising and unforeseen events will occur. Thus, gradually, when new biotechnologies reach clinics, what now seems radical will become routine and within the realm of normality. At the same time, a lot of money will be made or lost. And these changes will become so embedded in our ways of seeing, thinking, and acting that it will be increasingly difficult to recognize their novelty.

As Rose (2013) affirms, biology is no longer a predetermined destiny, judgments are no longer based on a clear dichotomy between normality and pathology, and traditional distinctions between illness and health are blurring. In this way, it has become increasingly difficult to sustain the idea of a dividing line between interventions aimed at preventing illness or frailty and interventions aimed at improving capacities. The very boundaries between life and death, which were traditionally considered to be definitive limits, have now become subject to negotiation and discussion.

It is precisely in this “in-between” space that I see experimental stem cell therapies for curing HIV. For decades, there has been widespread frustration at the hopes of achieving an effective cure. To a certain extent, this search led to the conception of a “symbolic cure”, represented by the “undetectable” state obtained by controlling the viral load in the body through continuous antiretroviral therapy and its biotechnological ramifications. In addition, experimental therapeutic approaches have emerged, such as stem cell and gene therapies, as extensions of regenerative medicine.

Initially, these practices generated skepticism, raised doubts about their results and generated criticism of the procedures involved. However, progressively, emerging cases of cure have indicated the adoption of personalized approaches with cell and gene therapy, which will most likely be available in clinics in coming years. I believe that these therapeutic approaches have the potential to be integrated into our daily lives, promoting new forms of subjectivation both for people living with HIV and for those who don’t live with it.

Just as we see a growing interest in the innovation of antiretroviral treatment, which does not always try to improve the quality of life of people living with HIV, but to expand the profits of big pharmaceutical companies, there is also an interest in personalized biotechnologies. These initiatives are related to the idea of regenerating and purifying bodies, something that has been sought since the early years of the HIV/AIDS pandemic, in a climate tainted by stigma and discrimination. Practices such as these that connect the management of desires, and of life and death make up the technobiopolitical framework that Preciado (2008) has characterized as the “pharmacopornographic regime”.

In this context, hope is intrinsically linked to the production of biomedical knowledge, the search for cures, and the involvement of patients and organizations in promoting health and guiding research. These aspects have been observed in this article and in many other studies dedicated to the context of the HIV/AIDS pandemic. Hope is not limited to individual desire, but becomes a political and economic force aimed at realizing future collective possibilities. As a political economy, hope is configured as a powerful architecture made up of agents and actions that influence norms, narratives and technobioscientific practices.

Although still restricted to the experimental scientific field, it is possible to envision potential revenue streams from these experimental curative practices, a characteristic of contemporary technobiopolitics. After all, the production of biomedical knowledge today is legitimized by its ability to promote human health, but it is increasingly intertwined with the values of generating economic wealth (Rabinow & Rose, 2006). Thus, these biotechnologies of hope not only have the potential to promote scientific advances, but are also entangled with economic interests, reflecting the intersection between science and capital.

The fact is that research dedicated to curing HIV, a goal previously considered distant or even unimaginable, is now at the center of attention in the political-scientific community. It has become a strategic priority for various international organizations, and is driving global collaborations and advances in clinical research. From a medical-scientific perspective, the first cases of HIV cures are significant milestones that have opened the way to other therapeutic possibilities. But beyond this perspective, it is important to recognize that curing HIV infection goes beyond a purely biomedical achievement, as it is a social intervention that carries with it complexities and effects whose meaning and impact are still uncertain.

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• Research conducted with financing from the Fundação de Amparo à Pesquisa do Estado de São Paulo - Fapesp (2019/22295-9) and the Conselho Nacional de Desenvolvimento Científico e Tecnológico - CNPq (140428/2019-4).

Edited by

• Editors
  Andrea de Souza Lobo (https://orcid.org/0000-0001-7525-1953)
  Antonio Carlos de Souza Lima (https://orcid.org/0000-0001-5260-236X)

Publication Dates

• Publication in this collection
  21 Oct 2024
• Date of issue
  2024

History

• Received
  18 Mar 2024
• Accepted
  22 May 2024