This website is about the intersection of attention-deficit/hyperactivity disorder (ADHD), and HIV, including people living with HIV and people taking HIV pre-exposure prophylaxis (PrEP).
In short
- ADHD is common, under-recognised, and almost unstudied in HIV care.
- The little evidence there is suggests ADHD may be far more common among people living with HIV. Among PrEP users, nobody has looked at all.
- ADHD traits can affect medication, appointments and stress, and may work in the other direction too, shaping how people come to acquire HIV.
- We take a neurodiversity approach: difference, not deficit. People with lived experience help lead this work.
Why are we interested in the intersection of ADHD, PrEP and HIV?
Around 1 in 40 adults globally is diagnosed with ADHD.
ADHD is a common but often overlooked condition affecting the way some peopleâs brains handle attention, impulses, and activity differently. However, the real number is likely higher: due to a lack of professional understanding of adult ADHD, it is under-recognised generally, and even more so in women and in racially minoritised people, whose traits are often missed or misread as something else.
A couple of very small studies suggest that people living with HIV might have much higher levels of ADHD than those without. Despite this, ADHD has barely been studied among people living with HIV, and not at all among those taking PrEP, despite the possible links between them.
This is important because ADHD traits can impact things that matter for day-to-day health: remembering medication, keeping appointments, or managing stress. People living with HIV already experience higher rates of anxiety and depression, and unrecognised ADHD may be part of that picture for some. Similar traits may affect PrEP usersâ routine care and consistent use.
Thereâs also a possible link the other way round. Some ADHD traits, like a tendency towards immediate rather than longer-term rewards, can make things like consistent condom use challenging. ADHDers are also more likely to have experienced relationship instability or difficult life events, use a variety of substances, and more likely to identify as LGBTQ+, all of which can add up to a higher chance of acquiring HIV.
None of this is about blaming individuals: itâs about a mismatch between how some peopleâs brains navigate a world - and a healthcare system - not built for them.
We want to raise awareness of ADHD amongst HIV and PrEP professionals. Above all, we also want to better understand how many people living with HIV or taking PrEP also have high ADHD traits, and how those traits intersect with other parts of their lives, such as substance use, gender, sexuality and so on. This will help inform and direct future research, and therefore contribute to our understanding of how ADHDers can best be supported within our healthcare systems.
What is our approach?
We take a neurodiversity approach, which treats differences in how brains work, including ADHD, as natural variation rather than a fault to correct. Many of the difficulties people face come as much from a world not built to accommodate different ways of thinking and focusing as from ADHD itself.
More specifically, we use Critical ADHD Studies (CADS) as a framework guiding the study. CADS rests on a few core ideas:
People with ADHD should have a real say in research about them, whether or not they also have academic or clinical expertise.
ADHD is best understood through medicine, social science, and the humanities together, not any one alone.
ADHD is neither a âsuperpowerâ nor a âdisorderâ. Both framings can cause harm, under-estimating the very real difficulties that ADHD can bring, or stigmatising those with the label.
Access is not equal. ADHD research, diagnosis, and access to treatment arenât equally available to everyone. Things like race, gender, class, and sexuality all shape a personâs chances of being recognised, diagnosed and supported, and they can overlap to create different kinds of disadvantage (âintersectionalityâ). Thatâs why acknowledging and trying to understand these overlapping factors is built into CADS from the start.
Members of the research team have lived experience of the intersections of ADHD, HIV, and PrEP use, and other people at those intersections are consulted at various points during our study. In this way, we aim to avoid further stigmatising members of these groups, and to produce research that will have concrete, positive impacts on access to healthcare.
Our current project
The Survey is a cross-sectional survey estimating how common ADHD traits are among people living with HIV and PrEP users in Switzerland.