After HIV Exceptionalism:
Are We Protecting the Response or its Institutions?
By Dr. José M. Zuniga
For more than four decades, the global HIV response has rested on an extraordinary proposition: HIV required an extraordinary response. That proposition was correct. HIV exceptionalism mobilized unprecedented resources, created new institutions, transformed relationships between patients and healthcare professionals, elevated community leadership, accelerated scientific discovery, and established the expectation that governments should be held accountable for measurable health outcomes. But within the modern context, does HIV exceptionalism remain the best anchor?
Antiretroviral therapy (ART) transformed HIV from an almost uniformly fatal infection into a manageable chronic condition for those with consistent access to HIV care. U=U transformed our understanding of treatment and challenged decades of stigma. Long-acting pre-exposure prophylaxis (PrEP) and ART now offer possibilities that would have seemed unimaginable during the darkest early years of the HIV epidemic. PEPFAR and the Global Fund changed the trajectory of a pandemic. Activists changed science and medicine themselves.
These achievements must be defended fiercely, particularly at a moment when political and financial commitments to HIV are under enormous pressure. But defending the HIV response cannot mean insisting that every institution, funding mechanism, program, and organizational structure created during the past four decades must exist indefinitely in its current form. That distinction is becoming increasingly important as we navigate the exigencies of the current time we are all struggling to adjust to and labor within.
For decades, we have spent considerable time asking how to sustain the HIV response. Responding to that million (billion?) dollar question has come to take on an added urgency over the past year and a half. But perhaps we also need to ask a more uncomfortable question: Are we trying to sustain the extraordinary outcomes of the HIV response even as we acknowledge they were inequitable or the institutions of the HIV response? They are not necessarily the same thing, as important as they both are to the lives of people living with and vulnerable to HIV.
As I describe in my new book, “Aftershocks, Trump 2.0, Public Health, and Our Better Angels,” HIV exceptionalism was not merely a funding strategy; it became an ecosystem. Around the HIV response emerged dedicated government programs, multilateral institutions, financing mechanisms, NGOs, community organizations, clinics, conferences, journals, professional societies, surveillance systems, advocacy networks, and entire professional careers. That infrastructure accomplished extraordinary things.
But institutions also develop an understandable instinct for self-preservation. Organizations seek renewed funding. Programs defend their jurisdictions. Conferences need attendees. Bureaucracies protect mandates. Professional communities develop identities around particular diseases and populations. None of this requires bad intentions. It is simply what institutions do. The danger arises when we begin confusing the preservation of institutions with the preservation of the mission for which those institutions were created.
Moreover, the limitations of disease-specific architecture become particularly apparent when we consider the lives of people we serve. A person living with HIV, particularly if they are aging with HIV, may simultaneously be managing hypertension, obesity, diabetes, cardiovascular disease, depression, cancer risk, substance use, housing instability, or the consequences of aging. Someone seeking PrEP may need sexual healthcare, mental health services, contraception, vaccination, or treatment for another sexually transmitted infection.
Yet healthcare financing and delivery frequently require people to navigate separate systems created around diseases rather than lives. Our architecture is vertical and sometimes horizontal. Human beings are diagonal, horizontal, and vertical. The conventional answer has been “integration,” or simply adding hypertension screening to HIV clinics, incorporating mental health services, screening for cancers, or connecting patients to other programs. All of this is worthwhile. But integration may be too timid an ambition.
Instead of continually asking how additional services can be integrated into HIV programs, perhaps we should ask what healthcare would look like if the person – not HIV or any other disease – became the organizing principle of the healthcare system itself. Under that scenario, what would we build today given the opportunity to hit a reset button and build back better? Whole-person care is an approach IAPAC has integrated into our work, including our recent Continuum 2026 conference that highlighted cardiometabolic health in addition to HIV prevention and treatment.
Imagine that we could design the HIV response from scratch (or close to scratch), as we may well have to do if we continue to experience more disruptions. We would be designing it in an era of highly effective ART, U=U, long-acting PrEP and ART, artificial intelligence, sophisticated data systems, precision medicine, rapidly aging populations, accelerating urbanization, climate instability, and constrained public financing. And we would be doing so by recognizing individual health and life circumstances that are each distinct threads that weave together the human experience.
Should we take the easy road and reproduce the architecture developed during the emergency years of AIDS? Probably not. We might build systems capable of more equitably preventing HIV, rapidly diagnosing it, delivering PrEP and ART through multiple channels, using real-time data to identify gaps, and addressing people’s broader health needs throughout their lives. Ours would be a “no wrong door” approach that organizes care around people rather than diseases, recognizing that every encounter with the health system is an opportunity to address the interconnected health and life circumstances that shape well-being.
To be clear, this is not an argument for dismantling HIV infrastructure or reducing HIV investments any further than they have already been recently dismantled or chronically underfunded. Doing either has already had a disastrous impact on millions of people who depend upon these systems, and the epidemic remains far from over with global and national target deadlines more than likely to be missed at this point. The argument instead is one for something more ambitious: turning HIV infrastructure into health infrastructure.
In the work we are advancing through our sister organization, Fast-Track Health, it has become abundantly clear looking through the lens of other health responses that the HIV response possesses capabilities that much of public health still struggles to achieve: measurable targets, sophisticated surveillance, community accountability, differentiated service delivery, implementation science, global procurement mechanisms, political advocacy, and an extraordinary capacity to translate scientific advances into population-level impact. Why should those capabilities remain confined to HIV?
HIV clinics could increasingly become comprehensive health centers. HIV data platforms could evolve into broader health intelligence systems collecting broader data sets. Community-based organizations could expand their mandates to whole-person care while retaining the trust they have spent decades building. The implementation science developed around HIV could accelerate responses to cardiovascular disease, cancer, obesity, viral hepatitis, mental health conditions, climate-related health threats, and future infectious diseases. HIV would remain a priority; it simply would no longer have to remain a silo.
Can we plan for our own success? Yes, we have gifted, dedicated, and strategic leaders in our midst – some veterans and others young and emerging – who can lead the HIV response into its next iteration. But I submit there is an even harder question: Can institutions devoted to public health imagine a future in which they themselves must fundamentally change? Every organization, including ours, talks about sustainability. Far fewer talk about obsolescence. Yet institutional permanence should never be a public health outcome.
That conversation is not evidence that we have failed or succeeded completely. It is evidence that we intend to succeed and wish to rally our better selves, armed with the vim and vigor that characterizes our movement, to leave no one behind when the headwinds we face are so incredibly strong. Perhaps the ultimate objective is not to preserve HIV exceptionalism forever. Perhaps our collective objective is to preserve what was exceptional about the HIV response: its urgency, scientific ambition, community leadership, accountability, solidarity, and refusal to accept preventable death.
The HIV movement has spent four decades repeatedly and consistently demonstrating that health systems can work differently. US Food and Drug Administration (FDA) reforms alone are proof-positive. Our next responsibility is ensuring that lesson does not remain trapped inside the inflexible unchanging architecture of one disease. Making HIV medically ordinary without ever allowing injustice to become ordinary would not mark the end of the HIV response. In fact, it might represent its greatest achievement and our generation’s strategic contribution.
Dr. José M. Zuniga is President/CEO of IAPAC, Fast-Track Health, and the Fast-Track Cities Institute.
