Pharmaceutical Geographies of Self-Managed Sexual Health (PharmaSMaSH) is a major new research project hosted in the School of Geography and funded by UK Research and Innovation from 2024-2029.
People choose to self-manage health interventions when they face barriers to care, such as poor-quality health services or unaffordable treatments. Sexual and reproductive health treatments can be especially hard to access because of stigma. The medical products and treatments that people want are often unavailable in the formal healthcare system where they live or the treatments they seek are seen as immoral by local healthcare providers.
As a result, they self-manage health interventions out of fear or lack of other options.
Meanwhile, digital technologies are reshaping the geography of healthcare, by making it easier for people to purchase and import medicines that are not licensed in their country of residence. Self-managed health interventions are often unregulated and sometimes clandestine.
The medical marginalisation of people with stigmatised gender and sexual identities - gay, lesbian, bisexual, trans and non-binary people - and people with stigmatised reproductive health needs - people who seek out abortion and contraception – have long histories. What is new, and poorly understood, is how people who self-manage sexual and reproductive health interventions are using online platforms and self-sourced medications to do so. The treatments and products available online allow treatment communities to transgress local laws and norms, moving medicines and lay medical knowledge across borders.
PharmaSMaSH is a pathbreaking study that addresses this gap in understanding.
Developing the geographical methodology of ‘Follow the Thing’, PharmaSMaSH will study the self-managed use of SRH products by foregrounding the medicines themselves and studying their journey across political and regulatory boundaries.
The project explores three categories of medical products and the treatment communities that surround them:
Transgender and non-binary people use hormone products for self-managed care when they face barriers to treatment, like long waiting times for services, complicated diagnostic hurdles, or stigma from doctors. The availability of healthcare for medical transition vary widely depending on local laws, norms, healthcare system design, and insurance coverage, so some people seek out sex hormones online to undertake self-managed or DIY (do-it-yourself) care. Online communities have developed to support these efforts, providing advice on which products to use or where to obtain them.
IN THE REAL WORLD: In Brazil, transgender women who cannot obtain treatment in the public health system use informal networks to obtain oral contraceptive pills and hormonal contraceptive injections that contain sex hormones they can use to self-manage gender transition (Sanabria 2016).
Sanabria, Emilia. Plastic bodies: Sex hormones and menstrual suppression in Brazil. Duke University Press, 2016.
In countries where abortion is illegal or difficult to access, people turn to online vendors and underground networks to source medical abortion pills (mifepristone and misoprostol). Misoprostol can be purchased from pharmacies in some countries, while mifepristone is often harder to buy locally but is widely sold online because so many manufacturers in India and China produce generic mifepristone products. Abortion pills can be complex to import because of customs interception, so activist networks coordinate shipments across borders. Self-managed abortion is supported by extensive online treatment communities of activists who support pill users to undergo clandestine abortion and avoid detection if they live in countries where abortion is a crime.
IN THE REAL WORLD: Abortion is almost completely illegal in Poland. Polish activists use online platforms to share information about how to buy pharmaceutical abortion pills from Indian manufacturers and distributors, and how to obtain these products in Poland without violating its highly restrictive abortion law (Calkin 2023).
Calkin, Sydney. Abortion pills go global: Reproductive freedom across borders. Univ of California Press, 2023.
People who are HIV negative – but at risk for HIV - use medication known as Pre-exposure Prophylaxis (PrEP for short) to protect themselves. People who use PrEP are unlikely to contract HIV, even if they engage in unprotected sex with someone who is HIV positive. PrEP can be hard to access, depending on where you live: barriers include high cost, long wait times, stigma, or lack of information among doctors. People source PrEP outside of the healthcare system – sometimes known as “wild PreP” or “informal PrEP” – by travelling across borders or using online pharmacies. Treatment activist groups have been instrumental in widening access to PrEP, facilitating treatment pathways and providing information about safe ways to source and use the medicines.
IN THE REAL WORLD: Branded medicines are priced differently by country, so what costs hundreds of dollars in one country might cost pennies in another. People circumvent ‘tiered’ drug pricing by going abroad to get medications or setting up supply networks across borders. Julien Brisson studied informal PrEP among gay men in France, trying to understand how and why they got PrEP outside of the formal medical system. One respondent would “ask his friends from Africa to bring back to Paris boxes of generic tenofovir/emtricitabine – the two antiretroviral molecules that compose Truvada – which costs him 8€ a month” (Brisson 2017).
Brisson, Julien. "Ethical public health issues for the use of informal PrEP." Global public health 13, no. 10 (2018): 1382-1387.
The study of these products is siloed, meaning the current scholarship fails to examine the parallels between them which extend to their pharmaceutical origins, their transport, the communities that facilitate self-management of the products, and the users’ experiences of self-managed sexual health.
PharmaSMaSH has three key research objectives:
Objective 1: To transform the study of self-managed health and treatment communities by examining connections between groups that are organised around particular treatments and products in the sexual and reproductive health field.
Objective 2: To understand the transnational flow of pharmaceutical products that straddle the boundaries between licit/ illicit and legal/ illegal.
Objective 3: To facilitate knowledge exchange between informal treatment communities and stakeholders in medical and policy areas.
Who?
PharmaSMaSH is led by Dr Sydney Calkin from the School of Geography. The project will be carried out by Dr Calkin and a team of postdoctoral research associates. Later stages of the project will be carried out in association with Dr Roberto Buccafusca the School of Chemistry at QMUL.
Two postdoctoral research associates will join the team immediately to carry out the first work package: these postdoctoral research associates will be responsible for work on antiretrovirals for the prevention and treatment of HIV/AIDS and sex hormones for transgender hormone therapy.
The project is overseen by a scientific advisory board of social and medical scientists in the UK and Ireland.
Where?
PharmaSMaSH follows pharmaceutical products and treatment communities as they cross borders. It is not confined to particular countries: the regulatory landscape for pharmaceutical products and treatments changes quickly, as do the treatment communities who emerge to source products and share information. PharmaSMaSH uses the geographical method of 'following the thing', tracing how products circulate.
When?
PharmaSMaSH begins in October 2024. The first two postdoctoral research associates will be hired shortly afterwards. If you are interested in applying to be a part of PharmaSMaSH, please check for job vacancy listings on the QMUL jobs site.
How?
PharmaSMaSH is hosted in the School of Geography at QMUL. It was originally awarded as a European Research Council Starting Grant in 2023; it is now funded through the UK Research and Innovation Horizon Europe Guarantee scheme.
Header photo by Maksim Goncharenok, reproduced under Creative Commons license