Historical role of civil societies in addressing stigma

Civil societies, especially those led by or run in collaboration with people with lived experience, offer a powerful but often unrecognized avenue to transform how we tackle stigma against people with comorbid mental illness and SUDs. Drawing from historical examples of how civil societies transformed how we perceived, treated, and supported individuals with highly stigmatized conditions such as HIV/AIDS, current efforts to destigmatize comorbidities in mental illness and SUD can borrow from the lessons learned through these movements. For example, to fight state inaction and societal stigma against people with HIV/AIDS, the Treatment Action Campaign in South Africa, founded in 1998, mobilized public advocacy and legal action, which contributed to a shift in the perception and public health response to HIV from a private affliction to a public health and human rights issue (Robins, Reference Robins2006). Similarly, for non-communicable diseases that affect the brain, such as epilepsy, grassroots organizations led by people with lived experience, such as the International Bureau Against Epilepsy (IBE), have played a key role in changing policy to tackle stigma. For example, in 2022, the World Health Assembly adopted the Intersectoral Global Action Plan on Epilepsy and Other Neurological Disorders as a result of years of advocacy efforts by IBE in collaboration with other decision-making stakeholders in governments and other players such as scientists (Guekht et al. Reference Guekht, Brodie, Secco, Li, Volkers and Wiebe2021, Kanmounye et al. Reference Kanmounye, Abu-Bonsrah, Shlobin and Djoutsop2022).

Civil societies in mental health, SUD, and comorbidity

Despite these successes, civil society remains marginal in advocacy related to SUD, such as harm reduction (O’Gorman & Schatz, Reference O’Gorman and Schatz2021) and in mental ill health, where interventions are often top-down and clinically oriented (Thornicroft et al. Reference Thornicroft, Sunkel, Alikhon Aliev, Baker, Brohan, el Chammay, Davies, Demissie, Duncan, Fekadu, Gronholm, Guerrero, Gurung, Habtamu, Hanlon, Heim, Henderson, Hijazi, Hoffman and Winkler2022). This gap is even more pronounced in dual diagnosis contexts, where individuals face compounded stigma and systemic neglect (Corrigan et al. Reference Corrigan, Druss and Perlick2014). The limited integration of civil society in responses to mental illness, SUDs, and comorbidity underscores the need to re-evaluate how legitimacy, expertise, and leadership are defined in stigma reduction initiatives.

Civil society groups, often closer to the realities of people living with co-occurring conditions than institutional actors, can play a critical role in advocating for policies and practices that stop stigma. They are embedded in communities, culturally attuned, and nimble enough to address the social determinants of stigma in ways that top-down interventions cannot.

Examples of globally impactful civil society movements addressing mental ill health include the Global Mental Health Peer Network (GMHPN) (Sunkel, Reference Sunkel2021), which has emerged as a leader in focusing on lived experience in research and advocacy. With its headquarters in South Africa, GMHPN operates across multiple countries, empowering individuals with mental ill health to participate in shaping mental health systems. Through its advocacy efforts, network members are actively shaping the discourse on stigma in various ways, including by participating in research (Thornicroft et al. Reference Thornicroft, Sunkel, Alikhon Aliev, Baker, Brohan, el Chammay, Davies, Demissie, Duncan, Fekadu, Gronholm, Guerrero, Gurung, Habtamu, Hanlon, Heim, Henderson, Hijazi, Hoffman and Winkler2022) and organizing platforms such as global scientific conferences to foster dialogue on stigma. Regional efforts are underway to enhance civil society’s involvement in mental health advocacy. For example, the Africa Centres for Disease Control and Prevention (Africa CDC) is leading an initiative to map civil society organizations (CSOs) engaged in mental health activities. This initiative aims to create networking opportunities and improve access to resources, including small grants, to help these organizations achieve their goals (https://www.mhinnovation.net/mapping-mental-health-csos-africa. However, a critical consideration is the risk that initiatives such as those by the CDC may inadvertently institutionalize civil society operations. By their very nature, these entities are intended to disrupt and transcend the institutional barriers that often hinder effective responses to complex social and health challenges (Banks et al. Reference Banks, Hulme and Edwards2015).

The way forward

To make meaningful progress in reducing stigma in comorbid mental illness and SUDs, we must reframe stigma as a political and public health challenge and not merely a clinical or individual concern. We must also rethink our global health stigma reduction paradigms and fund CSOs as central components of these efforts while embedding lived experience in all aspects of research, program design, and policy. This should be done in the context of cross-sectoral partnerships between stakeholders in mental ill health and SUDs, such as governments, community organizations, and academic entities. Investment in CSOs should prioritize those that use participatory approaches that are contextually sensitive and culturally grounded, particularly in low and middle-income settings, which bear a disproportionately large burden of these disorders.

As the digital era reshapes health communication, we must rethink the traditional notion of “grassroots.” Movements are no longer limited to geographical spaces such as neighborhoods or villages but are now emerging from hashtags, blogs, and livestreams (Lupton, Reference Lupton2014). Crucially, we must now recognize the internet as a legitimate site of civil society due to its ability to host large groups of individuals with shared interests who would otherwise be isolated due to geographical limitations. For individuals isolated or stigmatized in their physical environments, online platforms provide spaces for visibility and opportunities for collective voice. These digital spaces, from peer-led forums to decentralized mental health movements, operate with the same grassroots ethos as physical collectives, yet leverage the scale and immediacy of networked technologies (Naslund et al. Reference Naslund, Aschbrenner, Marsch and Bartels2016). Online communities have shown the capacity to shape public discourse, hold institutions accountable, and offer real-time support to those affected by mental health and substance use conditions (Smith-Merry et al. Reference Smith-Merry, Goggin, Campbell, McKenzie, Ridout and Baylosis2019).

Additionally, technological advancements such as artificial intelligence (AI) have provided powerful tools to support, but not replace, stigma reduction efforts. For example, AI-powered natural language processing can help identify stigmatizing language in media or healthcare settings (Oscar et al. Reference Oscar, Fox, Croucher, Wernick, Keune and Hooker2017) while digital platforms can facilitate non-judgmental peer support (Strand et al. Reference Strand, Eng and Gammon2020). However, these technologies are only as effective as the values embedded in their design. Without the involvement of civil society and lived experience advocates, there is a real risk that AI will reproduce the biases it aims to challenge.

These developments challenge us to expand our understanding of civil society beyond the physical to include the digital infrastructures. It also challenges us to re-evaluate how we assign legitimacy in global health. The current practice is to relegate CSOs to the margins, often labeled as “consultants,” and assign them ancillary roles in advocacy, such as storytelling, yet evidence suggests that CSOs can play a transformative role in tackling stigma. As stakeholders in mental ill health and SUDs, we must ask ourselves: who is already doing the work, and how can we support and amplify them? The future of stigma reduction in comorbid mental ill health and SUDs lies in capitalizing on collective courage, centering efforts on lived-experience voices and utilizing the technological advancements that dismantled exclusionary barriers such as geography and limited data access. Civil society holds that courage; it is time we recognized it.