From Crisis to Change: What Mental Health Advocacy Can Learn from the HIV Movement
This article is part of a new report supported by Norrsken Mind, exploring reimbursement pathways for psychedelic therapies across Europe. PAREA’s Tadeusz Hawrot contributed to the report and shares this reflection in the Critical Observations from Collaborators section, drawing on lessons from the HIV movement to highlight the role of advocacy in accelerating access to innovative mental health treatments.
You can access the full report here: https://psychedelicsandreimbursement.com
Mental health is critically important to everyone, everywhere. Yet, it stands out as an area with some of the most glaring unmet needs. Psychedelic therapies have the potential to address critical gaps in treatment for various mental health conditions in Europe. However, before reaching patients, they must first gain approval from the European Medicines Agency (EMA), followed by integration into national healthcare systems for accessibility and reimbursement.
Europe has been a fertile ground for psychedelic research, with numerous early and mid-stage clinical trials underway. The contributions of European scientists, research institutions, and study participants have driven this progress. Despite these advancements, the continent faces a significant bottleneck: a lack of late-stage clinical programmes necessary to secure regulatory approval. Based on current timelines, it appears unlikely that any psychedelic therapy will receive EMA approval before the end of the decade. Even after approval, national reimbursement systems will likely require additional years to make these treatments accessible to patients.
One key factor identified in this report that could accelerate this process is clinical advocacy. The presence of researchers, clinical groups, and patient organisations actively advocating can positively influence access timelines.
The history of the HIV treatment movement offers valuable lessons in this regard.
Activists built the success of HIV/AIDS advocacy on strategies that can inform psychedelic therapy and mental health advocacy. A key element was activists’ deep engagement with science. Activist groups didn’t just advocate—they educated themselves to challenge regulators, pharmaceutical companies, and research institutions. Their expertise in clinical trial design, drug approval, and policy allowed them to influence decision-making.
Another defining strategy was combining public pressure with institutional engagement. Protests and civil disobedience brought attention to the crisis, while trained representatives worked inside regulatory and funding agencies to shape policy. This “inside-outside” approach ensured that those most affected had a voice in decision-making.
HIV/AIDS activists also mobilised affected communities, turning fear and grief into an organised movement. Those directly impacted took action, refusing to wait for change. Psychedelic and mental health advocacy must do the same, catering for patients, families, and professionals who understand the urgency of better treatment options. Their voices highlight the consequences of regulatory delays and the need for access.
Transparency was another cornerstone of HIV/AIDS activism. Activists pushed for openness in drug pricing, clinical trial data, and regulatory processes, ensuring treatments were not just developed but also made accessible. Psychedelic and mental health advocates must demand similar accountability to prevent therapies from being limited to expensive private clinics, ensuring broader public access.
Perhaps one of the most significant achievements of HIV/AIDS activism was its success in shifting public perception. In the early years of the epidemic, the public heavily stigmatised HIV, associating it with marginalised communities and moral judgment rather than treating it as a public health crisis. Activists worked relentlessly to change this narrative, framing HIV treatment as a human rights issue and pushing for broad-based political and financial commitments. Psychedelic therapies face a different but related challenge—decades of prohibition, underfunding, and misinformation have shaped public attitudes, making regulatory progress slower and more fraught with controversy. Advocacy efforts must work to change this narrative, establishing them as legitimate medical interventions for urgent mental health needs.
Finally, securing sustained political and financial support was crucial to the HIV/AIDS response, leading to major funding initiatives and policy shifts. Psychedelic and mental health advocates must do the same, ensuring research, clinical trials, and reimbursement pathways receive necessary investment. Engaging with regulators and integrating these treatments into broader health strategies at the national and EU levels will be essential for long-term impact.
For those interested in the impact of activism on healthcare, How to Survive a Plague chronicles how ACT UP and TAG activists, many with no prior expertise, became key players in HIV/AIDS policy, forcing action from governments and pharma. The film captures their protests, negotiations, and lasting impact— offering lessons still relevant for psychedelic and mental health advocacy (surviveaplague.com).
Recognising the impact that coordinated advocacy can have, organisations like PAREA strive to mobilise a broad coalition of stakeholders—including people with lived experience, scientists, clinicians, and civil society groups—to advance policy discussions and regulatory progress. By fostering dialogue between those developing psychedelic therapies and those in charge of approving and funding them, we aim to ensure that promising treatments do not remain locked behind bureaucratic or financial barriers.
The lessons from HIV/AIDS activism demonstrate that meaningful change requires a combination of expertise, organisation, public pressure, and persistence. By adopting these strategies, psychedelic and mental health advocates can accelerate the process of making these treatments widely available, ensuring that scientific progress translates into realworld impact for people living with mental health conditions