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.

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.

From modeling to morals: imagining the future of HIV PREP in Lesotho.

Amidst growing global endorsements of new biomedical HIV prevention strategies, ARV-based pre-exposure prophylaxis (ARV PrEP) has garnered considerable attention as a potentially promising prevention strategy. Though it may offer more effective protection for certain at-risk groups than conventional prevention strategies (such as sexual partner reduction, condom use, and prevention of mother-to-child transmission), PrEP is more costly. PrEP requires more ongoing contact between individuals and providers, and a level of surveillance from the health system that is not necessary with other preventive measures. In this sense, it represents a new bio-technology for HIV prevention that poses particular challenges for worldwide implementation, given developing countries' struggling health systems and incomplete HIV treatment programs. Since the emergence of PrEP has stimulated ethical discussions premised on incomplete knowledge of efficacy and implementation, this paper explores the ethical parameters of a likely scenario for PrEP usage in a single, resource-poor country. We first develop a plausible model for PrEP deployment and utilization based on current PrEP research, while carefully considering the reigning institutional values of feasibility and effectiveness in global health approaches. Drawing on ethnographic research of HIV treatment and prevention approaches in Lesotho, we address ethical questions arising from this scenario of PrEP delivery. Lesotho presents a compelling and emblematic case study of PrEP's potential successes and pitfalls in a developing country, given the country's high HIV prevalence, struggles to achieve universal access to HIV treatment regimes, continued existence of stigma around the epidemic, and difficulties in addressing persistent social inequalities that fuel infections.