Racial and gender disparities among highly successful medical crowdfunding campaigns.

There has been growing recognition of the popularity of medical crowdfunding and research documenting how crowdfunding arises from, and contributes to, social and health inequities. While many researchers have surmised that racism could well play a role in medical crowdfunding campaign outcomes, research on these dynamics has been limited. No research to date has examined these dynamics among the most successful medical crowdfunding campaigns, focusing instead on average users' experiences or specific patient subpopulations. This paper analyzes key characteristics and demographics of the 827 most successful medical crowdfunding campaigns captured at a point in time in 2020 on the popular site GoFundMe, creating the first demographic archetype of "viral" or highly successful campaigns. We hypothesized that this sample would skew towards whiter, younger populations, more heavily represent men, and reflect critical illnesses and accidents affecting these populations, in addition to having visually appealing, well-crafted storytelling. Analysis supported these hypotheses, showing significant levels of racial and gender disparities among campaigners. While white men had the greatest representation, Black and Asian users, and black women in particular, were highly underrepresented. Like other studies, we find evidence that racial and gender disparities persist in terms of campaign outcomes as well. Alongside this quantitative analysis, a targeted discourse analysis revealed campaign narratives and comments reinforced racist and sexist tropes of selective deservingness. These findings add to growing calls for more health research into the ways that social media technologies shape health inequities for historically marginalized and disenfranchised populations. In particular, we underscore how successful crowdfunding campaigns, as a both a means of raising funds for health and a broader site of public engagement, may deepen and normalize gendered and racialized inequities. In this way, crowdfunding can be seen as a significant technological amplifier of the fundamental social causes of health disparities.

The Paradoxical Relationship Between Health Promotion and the Social Media Industry.

Mounting evidence suggests that problematic adolescent social media use is associated with poor mental health. To respond to increased adolescent mental health concerns, health promoters increasingly rely on social media initiatives to promote their resources, programs, and services. This creates a paradoxical situation where social-media-linked adverse mental health outcomes are addressed using the same tools and platforms that can contribute to the development of such issues. It also highlights several areas of needed critical assessment in health promotion usage of social media platform features and products, such as addictive platform design, targeted marketing tools, data collection practices, impacts on underserved groups, and conflicts of interest. To advance subsequent action on these tensions, we offer three recommendations for health promoters that build upon existing scholarship and initiatives, including adapting ethical guidelines for health promoters using social media, adopting conflicts of interest policies, and promoting interdisciplinary scholarship.

Struggling, helping and adapting: Crowdfunding motivations and outcomes during the early US COVID-19 pandemic.

During the early months of COVID-19, many people in the US turned to charitable crowdfunding to seek and provide assistance. Little is known about the needs, hopes or experiences that motivated US pandemic crowdfunding and how these were correlated with campaign success. This study uses a mixed-methods data analysis of a randomised cluster sample of 919 US GoFundMe campaigns during the first 7 months of the pandemic. Overall, most campaigns performed poorly, and 38% got no donations at all. The largest proportion of campaigns aimed to address individual, acute financial struggles, often arising from considerable challenges accessing or qualifying for government assistance. These campaigns, as well as those involving campaigners and beneficiaries of colour, tended to be least successful. Qualitative thematic analysis revealed three key crowdfunding motivations that reflect individualistic, agentive responses to the pandemic: struggling, helping and adapting. These motivations reveal a shift away from social suffering and collective mobilisation and towards largely individualised efforts of survival as digital crowdfunding becomes a key domain of crisis response. Crowdfunding platforms are playing an increasingly important role in mediating and influencing individual and collective responses to crisis, which has important political ramifications for how societies perceive and address health emergencies.

Mutual Aid Praxis Aligns Principles and Practice in Grassroots COVID-19 Responses Across the US.

COVID-19 elicited a rapid emergence of new mutual aid networks in the US, but the practices of these networks are understudied. Using qualitative methods, we explored the empirical ethics guiding US-based mutual aid networks' activities, and assessed the alignment between principles and practices as networks mobilized to meet community needs during 2020-21. We conducted in-depth interviews with 15 mutual aid group organizers and supplemented these with secondary source materials on mutual aid activities and participant observation of mutual aid organizing efforts. We analyzed participants' practices in relation to key mutual aid principles as defined in the literature: 1) solidarity not charity; 2) non-hierarchical organizational structures; 3) equity in decision-making; and 4) political engagement. Our data also yielded a fifth principle, "mutuality," essential to networks' approaches but distinct from anarchist conceptions of mutualism. While mutual aid networks were heavily invested in these ethical principles, they struggled to achieve them in practice. These findings underscore the importance of mutual aid praxis as an intersection between ethical principles and practices, and the challenges that contemporary, and often new, mutual aid networks responding to COVID-19 face in developing praxis during a period of prolonged crisis. We develop a theory-of-change model that illuminates both the opportunities and the potential pitfalls of mutual aid work in the context of structural inequities, and shows how communities can achieve justice-oriented mutual aid praxis in current and future crises.

Medical Crowdfunding and Disparities in Health Care Access in the United States, 2016‒2020.

Objectives. To assess whether medical crowdfunding use and outcomes are aligned with health financing needs in the United States. Methods. We collected data on 437 596 US medical GoFundMe campaigns between 2016 and 2020. In addition to summarizing trends in campaign initiation and earnings, we used state- and county-level data to assess whether crowdfunding usage and earnings were higher in areas with greater medical debt, uninsured populations, and poverty. Results. Campaigns raised more than $2 billion from 21.7 million donations between 2016 and 2020. Returns were highly unequal, and success was low, especially in 2020: only 12% of campaigns met their goals, and 16% received no donations at all. Campaigns in 2020 raised substantially less money in areas with more medical debt, higher uninsurance rates, and lower incomes. Conclusions. Despite its popularity and portrayals as an ad-hoc safety net, medical crowdfunding is misaligned with key indicators of health financing needs in the United States. It is best positioned to help in populations that need it the least. (Am J Public Health. 2022;112(3):491-498. https://doi.org/10.2105/AJPH.2021.306617).

Pre-emption strategies to block taxes on sugar-sweetened beverages: A framing analysis of Facebook advertising in support of Washington state initiative-1634.

ABSTRACTIn 2018, the sugar-sweetened beverage (SSB) industry introduced a ballot measure (I-1634) in Washington State of the United States to prevent further local taxes on groceries. The measure, which passed, is emblematic of new pre-emptive legislative strategies by the SSB industry to block soda taxes and conceal those strategies under the guise of preventing burdensome 'grocery taxes'. This paper uses qualitative framing analysis to examine a public archive of 1218 Facebook advertisements to understand how I-1634 proponents shaped public discourse and engaged in misinformation efforts online during the lead up to the passage of I-1634. Coding strategies identified 7 compelling and inter-related framing strategies used by the campaign. These included strategies that misinformed the public about the threat of grocery taxation and the economic impacts it would have on the region. Strategies to conceal the true intent of the ballot measure and the sponsors of the campaign were aided by Facebook's advertising platform, which does not moderate misinformation in advertising and allows advertisers to conceal their sponsors. We urge public health researchers and advocates to pay more attention to how Facebook and other social media platforms can be used by industries to target voters, misinform publics, and misconstrue industry support.

Crowdfunding as a response to COVID-19: Increasing inequities at a time of crisis.

During the first seven months of the COVID-19 pandemic, more than 175,000 crowdfunding campaigns were established in the US for coronavirus-related needs using the platform GoFundMe. Though charitable crowdfunding has been popular in recent years, the widespread creation of COVID-19 related campaigns points to potential shifts in how the platform is being used, and the volume of needs users have brought to the site during a profound economic, social, and epidemiological crisis. This study offers a systematic examination of the scope and impacts of COVID-19 related crowdfunding in the early months of the pandemic and assesses how existing social and health inequities shaped crowdfunding use and outcomes. Using data collected from all US-based GoFundMe campaigns mentioning COVID or coronavirus, we used descriptive analysis and a series of negative binomial and linear models to assess the contributions of demographic factors and COVID-19 impacts to campaign creation and outcome. We find significant evidence of growing inequalities in outcomes for campaigners. We find that crowdfunding provides substantially higher benefits in wealthier counties with higher levels of education. People from these areas are more likely to initiate campaigns in response to adverse health and economic impacts of COVID-19, and they also receive more funding compared to people living in areas with lower income and education. Modeling also indicates differential outcomes based on the racial and ethnic composition of county population, though without more detail about who is creating and funding campaigns we cannot explain causality. A targeted qualitative analysis of the top earning COVID-19 campaigns offers further evidence of how user privilege and corporate practices contribute to highly unequal outcomes. Taken together, these findings demonstrate how a market-oriented digital technology used to respond to large-scale crisis can exacerbate inequalities and further benefit already privileged groups.

Like a Grinding Stone: How Crowdfunding Platforms Create, Perpetuate, and Value Health Inequities.

This article explores how inequities are reproduced by, and valued within, the increasingly ubiquitous world of medical crowdfunding. As patients use platforms like GoFundMe to solicit donations for health care, success stories inundate social media. But most crowdfunders experience steep odds and marginal benefits. Drawing on the problematic figure of the "black box" in health disparities research and technology studies, I offer ethnography as a tool for unpacking often inscrutable and complex pathways through which online platforms amplify inequities. By leveraging both online and traditional research strategies-a platform analysis and paired narratives of crowdfunders' disparate experiences, drawn from open-ended interviews-this article explores how inequities are created and experienced by users. The analysis highlights how inequities are simultaneously central to the functioning of this marketplace and occluded by its platform design. Consequently, crowdfunding is concealing health inequities while shifting public values about who is entitled to health care, and why.

On symbols and scripts: The politics of the American COVID-19 response.

The COVID-19 crisis emerged during a divisive time in American politics. We argue that to unravel the American COVID-19 crisis-and to craft effective responses-we need a more sophisticated understanding of the political culture of public health crises. We use data from interviews and online media to examine symbolic representation of public health phenomena (masks; public health institutions) within the first months of the US epidemic. We show how political scripts about pandemic responses are shaped by, and align with, deeply-rooted social values and political cultures. Social processes of meaning-making help explain the evolution of increasingly partisan public health discourse regarding topics like masking and institutional trust. We highlight the lack of memorialization of deaths in America-that has not acquired the same polarized political meaning as other issues-to consider how and why certain issues gain political valence, and what opportunities certain acts of politicization provide in shifting public discourse. The coronavirus pandemic challenged the science of public health strategy, and the legitimacy of its institutions, with devastating consequences. Anticipating and understanding the central role of political cultures, cultural scripts, and meanings in positioning public health measures is essential for more effective responses to COVID-19 and future pandemics.

A cross-sectional study of social inequities in medical crowdfunding campaigns in the United States.

Americans are increasingly relying on crowdfunding to pay for the costs of healthcare. In medical crowdfunding (MCF), online platforms allow individuals to appeal to social networks to request donations for health and medical needs. Users are often told that success depends on how they organize and share their campaigns to increase social network engagement. However, experts have cautioned that MCF could exacerbate health and social disparities by amplifying the choices (and biases) of the crowd and leveraging these to determine who has access to financial support for healthcare. To date, research on potential axes of disparity in MCF, and their impacts on fundraising outcomes, has been limited. To answer these questions, this paper presents an exploratory cross-sectional study of a randomized sample of 637 MCF campaigns on the popular platform GoFundMe, for which the race, gender, age, and relationships of campaigners and campaign recipients were categorized alongside campaign characteristics and outcomes. Using both descriptive and inferential statistics, the analysis examines race, gender, and age disparities in MCF use, and tests how these are associated with differential campaign outcomes. The results show systemic disparities in MCF use and outcomes: people of color (and black women in particular) are under-represented; there is significant evidence of an additional digital care labor burden on women organizers of campaigns; and marginalized race and gender groups are associated with poorer fundraising outcomes. Outcomes are only minimally associated with campaign characteristics under users' control, such as photos, videos, and updates. These results corroborate widespread concerns with how technology fuels health inequities, and how crowdfunding may be creating an unequal and biased marketplace for those seeking financial support to access healthcare. Further research and better data access are needed to explore these dynamics more deeply and inform policy for this largely unregulated industry.

Crowdfunding and global health disparities: an exploratory conceptual and empirical analysis.

BACKGROUND: The use of crowdfunding platforms to cover the costs of healthcare is growing rapidly within low-, middle-, and high-income countries as a new funding modality in global health. The popularity of such "medical crowdfunding" is fueled by health disparities and gaps in health coverage and social safety-net systems. Crowdfunding in its current manifestations can be seen as an antithesis to universal health coverage. But research on medical crowdfunding, particularly in global health contexts, has been sparse, and accessing robust data is difficult. To map and document how medical crowdfunding is shaped by, and shapes, health disparities, this article offers an exploratory conceptual and empirical analysis of medical crowdfunding platforms and practices around the world. Data are drawn from a mixed-methods analysis of medical crowdfunding campaigns, as well as an ongoing ethnographic study of crowdfunding platforms and the people who use them. RESULTS: Drawing on empirical data and case examples, this article describes three main ways that crowdfunding is impacting health equity and health politics around the world: 1) as a technological determinant of health, wherein data ownership, algorithms and platform politics influence health inequities; 2) as a commercial determinant of health, wherein corporate influence reshapes healthcare markets and health data; 3) and as a determinant of health politics, affecting how citizens view health rights and the future of health coverage. CONCLUSIONS: Rather than viewing crowdfunding as a social media fad or a purely beneficial technology, researchers and publics must recognize it as a complex innovation that is reshaping health systems, influencing health disparities, and shifting political norms, even as it introduces new ways of connecting and caring for those in the midst of health crises. More analysis, and better access to data, is needed to inform policy and address crowdfunding as a source of health disparities.

Critical perspectives on the 'end of AIDS'.

This special symposium critically examines optimistic promises about an imminent 'end of AIDS,' currently circulating in global health discourse and policy. We aim not simply to interrogate the discourse surrounding calls to end AIDS, but to also explore the broader practices, contexts, and policy landscapes that have transformed the global HIV response during the fourth decade of the epidemic and allowed this discourse to gain such political traction. In this introduction we preview the collection's five substantive papers, which delve beneath the 'end of AIDS' rhetoric, bringing greater realism as well as resolve together with empirical evidence about the state of efforts to end AIDS in diverse locations and populations. Taken together, these papers critique not the hope that one day AIDS may come to an end, but the means by which current policy expects to arrive at such ends, particularly in the absence of realistic, sustained commitments to extending treatment, prevention, and broader support in highly under-resourced places and populations.

From a global crisis to the 'end of AIDS': New epidemics of signification.

In the past decade, discourses about AIDS have taken a remarkable, and largely unquestioned, turn. Whereas mobilisations for treatment scale-up during the 2000s were premised on perceptions of an 'epidemic out of control', we have repeatedly been informed in more recent years that an end to AIDS is immanent. This new discourse and its resulting policies are motivated by post-recession financial pressures, a changing field of global institutions, and shifting health and development priorities. These shifts also reflect a biomedical triumphalism in HIV prevention and treatment, whereby shorter term, privatised, technological, and 'cost-effective' interventions are promoted over long-term support for antiretroviral treatment. To explore these changes, we utilise Treichler's [(1987). How to have theory in an epidemic: Cultural chronicles of AIDS. Durham, NC: Duke University Press] view of AIDS as an 'epidemic of signification' to develop a review of 'End of AIDS' discourses in recent years. We use this review to investigate the political and philanthropic interests served by efforts to rebrand and re-signify the epidemic. We also hold up these discourses against the realities of treatment access in resource-poor countries, where 'Ending AIDS' has not heralded the end of an epidemic per se, but rather the end of external support for treatment programmes, highlighting new difficulties for sustaining treatment in this new era of the epidemic.

Producing a worthy illness: Personal crowdfunding amidst financial crisis.

For Americans experiencing illnesses and disabilities, crowdfunding has become a popular strategy for addressing the extraordinary costs of health care. The political, social, and health consequences of austerity--along with fallout from the 2008 financial collapse and the shortcomings of the Affordable Care Act (ACA)--are made evident in websites like GoFundMe. Here, patients and caregivers create campaigns to solicit donations for medical care, hoping that they will spread widely through social networks. As competition increases among campaigns, patients and their loved ones are obliged to produce compelling and sophisticated appeals. Despite the growing popularity of crowdfunding, little research has explored the usage, impacts, or consequences of the increasing reliance on it for health in the U.S. or abroad. This paper analyzes data from a mixed-methods study conducted from March-September 2016 of 200 GoFundMe campaigns, identified through randomized selection. In addition to presenting exploratory quantitative data on the characteristics and relative success of these campaigns, a more in-depth textual analysis examines how crowdfunders construct narratives about illness and financial need, and attempt to demonstrate their own deservingness. Concerns with the financial burdens of illness, combined with a high proportion of campaigns in states without ACA Medicaid expansion, underscored the importance of crowdfunding as a response to contexts of austerity. Successful crowdfunding requires that campaigners master medical and media literacies; as such, we argue that crowdfunding has the potential to deepen social and health inequities in the U.S. by promoting forms of individualized charity that rely on unequally-distributed literacies to demonstrate deservingness and worth. Crowdfunding narratives also distract from crises of healthcare funding and gaping holes in the social safety net by encouraging hyper-individualized accounts of suffering on media platforms where precarity is portrayed as the result of inadequate self-marketing, rather than the inevitable consequences of structural conditions of austerity.

The shrinking world of girls at puberty: violence and gender-divergent access to the public sphere among adolescents in South Africa.

Participatory mapping was undertaken with single-sex groups of grade 5 and grade 8-9 children in KwaZulu-Natal. Relative to grade 5 students, wide gender divergence in access to the public sphere was found at grade 8-9. With puberty, girls' worlds shrink, while boys' expand. At grade 5, female-defined community areas were equal or larger in size than those of males. Community area mapped by urban grade 8-9 girls, however, was only one-third that of male classmates and two-fifths that of grade 5 girls. Conversely, community area mapped by grade 8-9 boys was twice that of grade 5 boys. Similar differences emerged in the rural site. No female group rated a single community space as more than 'somewhat safe'. Although curtailed spatial access is intended to protect girls, grade 8-9 girls reported most places in their small navigable areas as very unsafe. Expanded geographies of grade 8-9 boys contained a mix of safe and unsafe places. Reducing girls' access to the public sphere does not increase their perceived safety, but may instead limit their access to opportunities for human development. The findings emphasise the need for better violence prevention programming for very young adolescents.

A manufactu(RED) ethics: labor, HIV, and the body in Lesotho's "sweat-free" garment industry.

Employing mostly women and producing for major U.S. labels, Lesotho's primarily foreign-owned garment industry undertook efforts to become "sweat-free" in 2006; simultaneously, it also began producing for the Product(RED) campaign. This article explores the parameters and ethical challenges of an industry-wide, public-private partnership providing HIV prevention and treatment services in this industry. Here, HIV services are intimately bound up in emerging patterns of humanitarian consumption and the production of an ethical industry. Within this ethical production zone, all is not what it seems: Labor violations persist, workers confront occupational hazards, and an elaborate theatrics of ethical practice plays out on the factory floor during routine inspections. This article explores the place and purpose of HIV treatment in the context of such humanitarian fetishism, highlighting the uses to which worker bodies are put and the conceptions of bodily well-being that prevail in these new "moral" economies.

Participation, decentralisation and déjà vu: Remaking democracy in response to AIDS?

Participation, decentralisation and community partnership have served as prominent motifs and driving philosophies in the global scale-up of HIV programming. Given the fraught histories of these ideas in development studies, it is surprising to encounter their broad appeal as benchmarks and moral practices in global health work. This paper examines three intertwined, government-endorsed projects to deepen democratic processes of HIV policy-making in Lesotho: (1) the 'Gateway Approach' for decentralising and coordinating local HIV responses; (2) the implementation of a community council-driven priority-setting process; and (3) the establishment of community AIDS councils. Taken together, these efforts are striking and well intentioned, but nonetheless struggle in the face of powerful global agendas to establish meaningful practices of participation and decentralisation. Examining these efforts shows that HIV scale-up conveys formidable lessons for citizens about the politics of global health and their place in the world. As global health initiatives continue to remake important dimensions of political functioning, practitioners, agencies and governments implementing similar democratising projects may find the warnings of earlier development critics both useful and necessary.