Blanca Lopez-Villalba, Monica Alonso-Gonzalez, Bernardo Nuche-Berenguer, J. Javier Castrodeza-Sanz, Omar Sued
<p>The collection and analysis of HIV-related mortality trends and their causes in Latin America (LA) are limited, which impedes planning and prioritization of interventions. National HIV surveillance databases within the region typically do not track deaths among people living with HIV directly. Instead, countries report information received from the vital registration (VR) system or rely on modelled statistical estimates. VR system uses the International Classification of Diseases (ICD) to standardize, record and categorize causes of death. While this coding system is essential for monitoring mortality trends, its implementation is often delayed and affected by multiple factors that compromise the quality of death certification [<span>1</span>].</p><p>In the case of HIV, the ICD codes B20−24 are used to classify deaths related to conditions listed as WHO Stage 4 or CDC Stage C. However, misclassifications leading to underreporting are common. These often result from the use of ill-defined codes (i.e. symptoms, signs, and abnormal clinical and laboratory findings such as codes R00−R99) or garbage codes (e.g. listing only the immediate or intermediate causes of death without identifying the underlying cause, often due to lack of knowledge, stigma or confidentiality concerns). Misclassification can also lead to overreporting by incorrectly attributing HIV deaths to diseases that mimic HIV infection or by assigning HIV as the underlying cause in deaths primarily due to other conditions. While globally the misclassification has declined, researchers estimated that between 8.5% and 39.7% of total HIV deaths remain misclassified [<span>2</span>].</p><p>In LA, only two studies—over a decade old—have examined how HIV-related deaths are captured in VR systems. These studies, conducted in Brazil [<span>3</span>] and Mexico [<span>4</span>], highlight the limited availability of data on this topic. Notably, they also identified inaccuracies in death attribution with estimated misclassification rates of around 27% and 11%, respectively. These findings suggest persistent weaknesses in how HIV deaths are coded in LA information systems.</p><p>Frameworks to improve the accuracy and comparability of cause-of-death data have been developed to estimate trends in HIV mortality. These frameworks account for variability in the completeness of VR data, redistribute deaths attributed to garbage codes and correct for misclassifications [<span>2</span>]. However, their effectiveness is limited by countries’ analytic capacity to conduct such analyses.</p><p>One such approach is the Coding Causes of Death in HIV (CoDe) Project, developed by the EuroCoord/EACS collaboration [<span>5</span>]. CoDe uses data collection from multiple sources, such as medical records, autopsy reports and death certificates, and uses a centralized adjudication process with independent reviewers to accurately attribute the cause of death (e.g. AIDS-related, non-AIDS-related, unknown). This metho
{"title":"What is not measured cannot be improved: the urgency to understand causes of HIV-related deaths in Latin America","authors":"Blanca Lopez-Villalba, Monica Alonso-Gonzalez, Bernardo Nuche-Berenguer, J. Javier Castrodeza-Sanz, Omar Sued","doi":"10.1002/jia2.70065","DOIUrl":"https://doi.org/10.1002/jia2.70065","url":null,"abstract":"<p>The collection and analysis of HIV-related mortality trends and their causes in Latin America (LA) are limited, which impedes planning and prioritization of interventions. National HIV surveillance databases within the region typically do not track deaths among people living with HIV directly. Instead, countries report information received from the vital registration (VR) system or rely on modelled statistical estimates. VR system uses the International Classification of Diseases (ICD) to standardize, record and categorize causes of death. While this coding system is essential for monitoring mortality trends, its implementation is often delayed and affected by multiple factors that compromise the quality of death certification [<span>1</span>].</p><p>In the case of HIV, the ICD codes B20−24 are used to classify deaths related to conditions listed as WHO Stage 4 or CDC Stage C. However, misclassifications leading to underreporting are common. These often result from the use of ill-defined codes (i.e. symptoms, signs, and abnormal clinical and laboratory findings such as codes R00−R99) or garbage codes (e.g. listing only the immediate or intermediate causes of death without identifying the underlying cause, often due to lack of knowledge, stigma or confidentiality concerns). Misclassification can also lead to overreporting by incorrectly attributing HIV deaths to diseases that mimic HIV infection or by assigning HIV as the underlying cause in deaths primarily due to other conditions. While globally the misclassification has declined, researchers estimated that between 8.5% and 39.7% of total HIV deaths remain misclassified [<span>2</span>].</p><p>In LA, only two studies—over a decade old—have examined how HIV-related deaths are captured in VR systems. These studies, conducted in Brazil [<span>3</span>] and Mexico [<span>4</span>], highlight the limited availability of data on this topic. Notably, they also identified inaccuracies in death attribution with estimated misclassification rates of around 27% and 11%, respectively. These findings suggest persistent weaknesses in how HIV deaths are coded in LA information systems.</p><p>Frameworks to improve the accuracy and comparability of cause-of-death data have been developed to estimate trends in HIV mortality. These frameworks account for variability in the completeness of VR data, redistribute deaths attributed to garbage codes and correct for misclassifications [<span>2</span>]. However, their effectiveness is limited by countries’ analytic capacity to conduct such analyses.</p><p>One such approach is the Coding Causes of Death in HIV (CoDe) Project, developed by the EuroCoord/EACS collaboration [<span>5</span>]. CoDe uses data collection from multiple sources, such as medical records, autopsy reports and death certificates, and uses a centralized adjudication process with independent reviewers to accurately attribute the cause of death (e.g. AIDS-related, non-AIDS-related, unknown). This metho","PeriodicalId":201,"journal":{"name":"Journal of the International AIDS Society","volume":"28 12","pages":""},"PeriodicalIF":4.9,"publicationDate":"2025-11-27","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1002/jia2.70065","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145619236","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":1,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Beatriz Grinsztejn, Richard M. Ochanda, Sara M. Allinder, Rena Janamnuaysook, Andrew Grulich, Kenneth Ngure
<p>From the earliest days of the HIV epidemic, communities of people living with, and affected by, HIV have mobilized to advocate, driving political action, transforming research and service delivery, and fighting for equitable access to lifesaving care. This leadership has enabled millions to survive and thrive. Over the past year, the global HIV response has entered a period of heightened uncertainty, marked by significant funding cuts, widening inequities in prevention and treatment access, and growing pressure on health systems to sustain progress with fewer resources. As funding declines, human rights have been eroded, and science and global health assistance have become politicized, placing progress at risk. Meeting this moment requires renewed commitment to the values that have defined the HIV response: science, solidarity and social justice.</p><p>At IAS 2025 in Rwanda, over 700 scientists, advocates and public health leaders adopted the Kigali Declaration, a call to protect and build on more than four decades of progress against a disease that has killed over 44 million people [<span>1, 2</span>]. The declaration outlined five principles: embracing meaningful partnerships; supporting global HIV research; prioritizing HIV prevention; protecting human rights; and rejecting the politicization of science.</p><p>Building on this momentum, IAS—the International AIDS Society, through its <i>Road to Rio</i> initiative, launched a global consultation to accelerate implementation of these principles ahead of AIDS 2026—the 26th International AIDS Conference that will take place in Rio de Janeiro, Brazil. Participants identified three key advocacy priorities rooted in science and community leadership: sustaining investment in HIV science; ensuring that health systems are person-centred and grounded in human rights; and securing equitable access to prevention to achieve epidemic control.</p><p>These messages form a framework for coordinated action to advance priorities through a unified, evidence-based approach.</p><p><b>Investment in science saves lives</b></p><p>Continued investment in HIV research will drive the next generation of breakthroughs, benefiting public health far beyond the HIV field. The same research that revolutionized HIV care has already transformed multiple medical disciplines, including chimeric antigen receptor T-cell therapy for cancer, curative hepatitis C treatments [<span>3</span>], and insights into cardiovascular, autoimmune and blood conditions [<span>4</span>]. The development of HIV research infrastructure and implementation capacity have enabled faster, more coordinated responses to other health challenges, including COVID-19 and Mpox. Yet, the systems that enabled these advances are fragile. As research funding decreases, the discovery pipeline risks slowing just as new long-acting medications have demonstrated efficacy and transformative technologies like gene editing and immune-based cures are within reach. Sustaine
{"title":"From Kigali to Rio: advancing an evidence-based and equitable HIV response","authors":"Beatriz Grinsztejn, Richard M. Ochanda, Sara M. Allinder, Rena Janamnuaysook, Andrew Grulich, Kenneth Ngure","doi":"10.1002/jia2.70064","DOIUrl":"https://doi.org/10.1002/jia2.70064","url":null,"abstract":"<p>From the earliest days of the HIV epidemic, communities of people living with, and affected by, HIV have mobilized to advocate, driving political action, transforming research and service delivery, and fighting for equitable access to lifesaving care. This leadership has enabled millions to survive and thrive. Over the past year, the global HIV response has entered a period of heightened uncertainty, marked by significant funding cuts, widening inequities in prevention and treatment access, and growing pressure on health systems to sustain progress with fewer resources. As funding declines, human rights have been eroded, and science and global health assistance have become politicized, placing progress at risk. Meeting this moment requires renewed commitment to the values that have defined the HIV response: science, solidarity and social justice.</p><p>At IAS 2025 in Rwanda, over 700 scientists, advocates and public health leaders adopted the Kigali Declaration, a call to protect and build on more than four decades of progress against a disease that has killed over 44 million people [<span>1, 2</span>]. The declaration outlined five principles: embracing meaningful partnerships; supporting global HIV research; prioritizing HIV prevention; protecting human rights; and rejecting the politicization of science.</p><p>Building on this momentum, IAS—the International AIDS Society, through its <i>Road to Rio</i> initiative, launched a global consultation to accelerate implementation of these principles ahead of AIDS 2026—the 26th International AIDS Conference that will take place in Rio de Janeiro, Brazil. Participants identified three key advocacy priorities rooted in science and community leadership: sustaining investment in HIV science; ensuring that health systems are person-centred and grounded in human rights; and securing equitable access to prevention to achieve epidemic control.</p><p>These messages form a framework for coordinated action to advance priorities through a unified, evidence-based approach.</p><p><b>Investment in science saves lives</b></p><p>Continued investment in HIV research will drive the next generation of breakthroughs, benefiting public health far beyond the HIV field. The same research that revolutionized HIV care has already transformed multiple medical disciplines, including chimeric antigen receptor T-cell therapy for cancer, curative hepatitis C treatments [<span>3</span>], and insights into cardiovascular, autoimmune and blood conditions [<span>4</span>]. The development of HIV research infrastructure and implementation capacity have enabled faster, more coordinated responses to other health challenges, including COVID-19 and Mpox. Yet, the systems that enabled these advances are fragile. As research funding decreases, the discovery pipeline risks slowing just as new long-acting medications have demonstrated efficacy and transformative technologies like gene editing and immune-based cures are within reach. Sustaine","PeriodicalId":201,"journal":{"name":"Journal of the International AIDS Society","volume":"28 12","pages":""},"PeriodicalIF":4.9,"publicationDate":"2025-11-27","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1002/jia2.70064","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145619235","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":1,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
<p>I have learned that successful public health programmes rely on the strength of three pillars: science, community and political will [<span>1</span>]. Each public health challenge requires a different degree of support from these pillars, but if any one of them is undermined, public health struggles to uphold its mission—to protect people's health. HIV serves as a compelling case study of this principle, both in the United States and globally.</p><p>The story begins with the pillar of community. AIDS in America was first identified in the early 1980s among gay men—a community that had only recently mobilized for its liberation. Faced with a deadly outbreak, the infrastructure of the gay rights movement shifted from fighting for civil rights to fighting for survival. This community demanded that science be prioritized and that political will be shown at a time when both were lacking in response to the emerging epidemic. The community stormed the US Food and Drug Administration and the US National Institute of Health, staged powerful symbolic protests, burned effigies in public and forged strong alliances with government and scientists in private. This surge of community activism not only facilitated scientific efforts, but also helped shape and accelerate them, resulting in steady progress and major breakthroughs driven by, and for, the community.</p><p>Because of this, progress against HIV has often outpaced changes in society over the past three decades. Antiretroviral medications transformed HIV into a chronic, manageable disease for those who could access treatment. Later, it was discovered that the same treatment preventing disease progression also stopped sexual transmission of the virus—giving rise to the concept “Undetectable = Untransmittable” [<span>2</span>]. Pre-exposure prophylaxis moved quickly from clinical trial results to real-world implementation, albeit unevenly. Long-acting injectable treatments and preventatives have further strengthened the idea that, even without a vaccine, controlling the HIV epidemic is possible.</p><p>This period was, in many ways, a golden age for public health and science. But, as with all golden ages, challenges soon emerged. When political will wanes, the foundation is at risk of crumbling. When science is undermined by cultural battles and deprioritized by funders, the breakthroughs of previous decades can fade into memory. And when vital programmes are threatened with elimination by the very politicians who created them, both progress and people's health are put in jeopardy.</p><p>This is where we stand today. Both domestic and global HIV funding now face serious threats, caught in a storm of politics that intentionally disregards health equity. Current rhetoric labels gender identity as an ideology rather than a personal expression, prioritizes efforts to “end wokeness” over the goal of ending the HIV epidemic, misrepresents global HIV initiatives as wasteful “foreign aid,” and seeks to dismantl
{"title":"This is not normal: a call for HIV activism","authors":"Demetre C. Daskalakis","doi":"10.1002/jia2.70063","DOIUrl":"https://doi.org/10.1002/jia2.70063","url":null,"abstract":"<p>I have learned that successful public health programmes rely on the strength of three pillars: science, community and political will [<span>1</span>]. Each public health challenge requires a different degree of support from these pillars, but if any one of them is undermined, public health struggles to uphold its mission—to protect people's health. HIV serves as a compelling case study of this principle, both in the United States and globally.</p><p>The story begins with the pillar of community. AIDS in America was first identified in the early 1980s among gay men—a community that had only recently mobilized for its liberation. Faced with a deadly outbreak, the infrastructure of the gay rights movement shifted from fighting for civil rights to fighting for survival. This community demanded that science be prioritized and that political will be shown at a time when both were lacking in response to the emerging epidemic. The community stormed the US Food and Drug Administration and the US National Institute of Health, staged powerful symbolic protests, burned effigies in public and forged strong alliances with government and scientists in private. This surge of community activism not only facilitated scientific efforts, but also helped shape and accelerate them, resulting in steady progress and major breakthroughs driven by, and for, the community.</p><p>Because of this, progress against HIV has often outpaced changes in society over the past three decades. Antiretroviral medications transformed HIV into a chronic, manageable disease for those who could access treatment. Later, it was discovered that the same treatment preventing disease progression also stopped sexual transmission of the virus—giving rise to the concept “Undetectable = Untransmittable” [<span>2</span>]. Pre-exposure prophylaxis moved quickly from clinical trial results to real-world implementation, albeit unevenly. Long-acting injectable treatments and preventatives have further strengthened the idea that, even without a vaccine, controlling the HIV epidemic is possible.</p><p>This period was, in many ways, a golden age for public health and science. But, as with all golden ages, challenges soon emerged. When political will wanes, the foundation is at risk of crumbling. When science is undermined by cultural battles and deprioritized by funders, the breakthroughs of previous decades can fade into memory. And when vital programmes are threatened with elimination by the very politicians who created them, both progress and people's health are put in jeopardy.</p><p>This is where we stand today. Both domestic and global HIV funding now face serious threats, caught in a storm of politics that intentionally disregards health equity. Current rhetoric labels gender identity as an ideology rather than a personal expression, prioritizes efforts to “end wokeness” over the goal of ending the HIV epidemic, misrepresents global HIV initiatives as wasteful “foreign aid,” and seeks to dismantl","PeriodicalId":201,"journal":{"name":"Journal of the International AIDS Society","volume":"28 12","pages":""},"PeriodicalIF":4.9,"publicationDate":"2025-11-27","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1002/jia2.70063","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145619234","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":1,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Bonnie E. Shook-Sa, Paul N. Zivich, Stephen R. Cole, Nora E. Rosenberg, Michael G. Hudgens, Deborah J. Donnell, Sizulu Moyo, Khangelani Zuma, Helen Ayles, Peter Bock, Joseph J. Eron, Richard J. Hayes, Jessie K. Edwards