Forum on Global Health Ethics Webinar 11 MPOX, Bioethics, and the LGBTQI+
Webinar Summary by Dustin Duc Duong and Jan Schwarz
Introduction
In November 2022, the Forum for Global Health Ethics held an online event to discuss LGBTQI+ stigmatization, the broader issues of health inequality, and bioethics in the wake of the monkeypox (MPOX) outbreak. The forum is an outreach project organized by the Institute of Biomedical Ethics and History of Medicine at the University of Zurich (a World Health Organization Collaborating Centre for Bioethics). The Forum for Global Health Ethics and the Swiss Medical Weekly jointly organize a webinar series. The webinar on MPOX gathered a panel of experts, including researchers and policy advisors, to provide a range of different perspectives on the key ethical issues at stake in relation to LGBTQI+ health. Beyond the direct impacts of MPOX on the LGBTQI+ community, the speakers each presented a main concern of the global health response to epidemics, relating to logistical and coordination challenges as well as questions around discrimination and health communication more generally. These key issues touched upon stigmatization, historic distrust within marginalized communities, and, normatively, how actors should contribute to the policy response alongside communities and authorities.
The webinar was hosted by Nikola Biller- Andorno and Tania Manríquez Roa (University of Zurich, Switzerland). The international experts were Cleiton Euzébio de Lima (Joint United Nations Programme on HIV/AIDS), Julian März (University of Zurich, Switzerland), Stephen Molldrem (University of Texas Medical Branch, United States), and Carla Saenz (Pan-American Health Organization, PAHO). The event was attended by 77 participants, who were asked before and after the speakers’ presentations for their opinions on the main concerns of the global health response to the MPOX outbreak. The results can be seen below.
The following is a summary of some of the key topics of discussion at the forum.
Current situation of the MPOX outbreak and inequalities
As Cleiton Euzébio de Lima underlined MPOX-V has had a huge influence on the current health situation. There are more than 77,000 confirmed cases and 36 deaths reported regarding MPOX in 109 countries (accessed Oct 27, 2022). As Julian März stated, the most affected countries are the United States of America followed by Brazil, Spain, United Kingdom, France, Germany, Columbia, Peru and Mexico. In the earlier stages of the outbreak, the worldwide focus on MPOX was mainly on the WHO Europe region, but has now shifted to the WHO Americas region. Although, as Cleiton Euzébio de Lima highlighted, MPOX is considered to be a mild to moderate disease compared to COVID-19, it has a hospitalization rate of around 5 to 10%. Regardless of the pure number of cases, we should also thematize the loss of income for isolated patients and the discrimination and stigma regarding the MPOX infection. As seen in figure 1, a higher proportion of cases were recorded in the Region of the Americas relative to the number of cases recorded in the European Region.
If we look at the people, who have been diagnosed with MPX and gave information about their sexual orientation, over 87% identified themselves as gay, bisexual and other men who have sex with men (MSM). Additionally, the most commonly reported exposure was in a party setting with sexual contact (approximately 43% of the reported exposure settings). Added to this, we have a high rate of co-infections (approx. 49%) with the Human Immunodeficiency Virus (HIV). Cleiton Euzébio de Lima highlighted this point: a worse outcome is expected if a person has an untreated HIV infection and is MPX-V positive. As Stephen Molldrem suggested, existing disparities regarding ethnicity play a role in the chances that people have in having a HIV diagnosis. He explained that these disparities also occur in MPOX diagnosis. In parallel, he recognized a huge change in the infected patients' ethnicity for the US. In addition to the differences in infections Stephen Molldrem underlined that in October 2022 almost 50% of the MPOX infections occurred in African Americans, but regarding vaccination African Americans only make up 12%. This difference does not only raise the question, why African Americans and black people are less vaccinated than other ethnicities, although they are more often infected, this gap could also be dangerous for the goal to decrease the course of infection.
Inequities exist both at the national level, along the lines of ethnicity and sexuality (according to CDC data presented by Stephen Molldrem, African Americans and Latinos are overrepresented in the proportion of new MPOX cases), as well as the global level, with regards to focus on the Global North despite the needs of the Global South (MPOX was endemic in Africa before the global outbreak). Stephen Molldrem further highlighted that these inequities already existed prior to the outbreak of MPOX, but are further exacerbated and exposed due to the direct consequences on health outcomes and discrimination, entangled with concerns at the policy-response level.
Given these circumstances, Stephen Molldrem reiterated the need to evaluate and modify the existing health care strategies in response to MPOX.
Lessons from the past and the importance of patient experiences
During the webinar, Cleiton Euzébio de Lima especially focused on lessons from the HIV/AIDS response, given his role as Senior Adviser of the Civil Society Networking at UNAIDS. He makes clear that existing prejudices and stigma regarding the LGBTQI+ Community members are impacting the patients in multiple ways. For example, stigma can force people with symptoms to hide their signs of illness instead of visiting a doctor and get medical advice. The stricter the rules and laws for example against homosexual intercourse, the more likely a patient is going to hide their symptoms. This delays the access to testing and health care directly. Moreover, existing stigma can slow down the public health authorities in their actions against MPOX. Therefore, Cleiton Euzébio de Lima suggests a human right approach to support policy makers in creating laws and policies, which empower and protect patients, especially of vulnerable communities, instead of harming them. To create such policies we have to follow some greater “rules”. In line with this, Carla Saenz states that there are some points of consensus on which the international community have to agree. On the one hand the public health authorities have to protect and promote the health of the population that is currently primarily affected, on the other hand those authorities have the duty to ensure that their actions does not intensify the already existing stigma. However the policy makers should also respect the diverse sexual practices, gender orientations and identities. Although the difficulty to cover all aims to their full extent it is not ethically correct to remain “silent”. It is important to act up even if the state criminalizes homosexual intercourse. To ensure for example that the planned actions do not intensify existing stigmas, Cleiton Euzébio de Lima says that policy makers should involve local communities (e.g. LGTBQI+). In general, the creation of communication guidelines should not take place from the top down. Instead of this, affected persons should gain the opportunity to influence the process of making policies. Organizations like the WHO should firstly gain experiences and views from the local communities to let them slip in the creation of discrimination-free policies. To gain such important insights in the patients’ life, emotions and thoughts during the MPOX outbreak and their infection, Julian März introduced the DIPEx (“Database of Individual Patients ́ Experiences”) project. The DIPEx Methodology is an internationally-vetted method for rigorously and systematically eliciting, analyzing, and disseminating maximally heterogeneous health and healthcare experiences. It is based on the pioneering work of the Health Experiences Research Group (HERG) in the Nuffield Department of Primary Care Health Sciences at University of Oxford. During the interviews Julian März is collecting personal characteristics (age, gender, socioeconomic background, racial and ethnic background, geography) and illness characteristics (severity, types of symptoms, treatments). Patients' experiences are crucial in shaping health care responses, so that these policies can improve the current health care regarding MPOX. Needs or insights on negative health care situations can be collected using DIPEx. One greater aim of this project is not only to humanize the MPOX as disease and the patients, but also to prevent stigma and discrimination. Starting with a pilot study (n = 25 - 40) in nine different countries, Julian März and his colleagues try to get an overview about the patient's view on the MPOX outbreak.
Ethical challenges in policy-making
A central point of discussion was also how bioethics could and should be integrated into policy-making in response to outbreaks. Julian März highlighted two major themes of the WHO Expert Group on Monkeypox & Ethics, firstly ethical considerations regarding health communication (naming, language issues, ethical issues to collection and publication of patient experiences, adaptation of health communication to social contexts and the experiences of patients and medical professionals), and secondly access to healthcare (stigma-free pathways to vaccination, diagnostics and treatment). The inequities mentioned above, at the community and international levels, therefore necessitate the integration of ethics in both research and policy- making stages of the response to the MPOX outbreak as well as future health issues. Stephen Molldrem sees the disparities along the lines of ethnicity, sexual orientation, and HIV status as a further manifestation of pre-existing issues in the context of the US public health system. These health disparities, caused by an underfunded health system and distrust due to historic neglect, thus forming a bleak set of “MPOX futures” that might come if we do not proactively learn from past and present outbreaks.
How, then, may we integrate the ethical sphere into an area dominated by medical and legal discourse?
Carla Saenz underlined the duty of different actors, from public health authorities to communities, to take up responsibilities to ensure that inequities and discriminatory practices are not exacerbated by the health response. Collaboration, the objective for improved policy responses, can only take place if there is a building and fostering of trust.
Communicating ethically, for example, is a moral duty that should be undertaken by providing a space for public health ethics vocabulary that is distinct from legal and medical language, but is nevertheless a necessary element of protecting the health of populations at risk. In the case of contact tracing, the challenges related to the fear of misuse of data (such as health authorities sharing medical data with immigration officials) must be addressed capturing moral obligations beyond the legal framework, clarifying our obligations to each other, and achieving coordination through identifying responsibilities and taking up responsibilities for trust-building.
In short, we start to address the layers of stigmatization, discrimination, and health inequalities by taking seriously the need to normatively consider ethical “oughts” and “shoulds”, capturing the full richness and spectrum of the moral vocabulary beyond the legal framework.
Q&A and conclusion
The discussion and Q&A that followed echoed the concerns presented by the expert panel:
- How do we deal with a challenging legal environment, as is the case in countries where homosexuality is criminalized? Access is important and possible, but contact and working with communities or allies is the best approach to build responses that do not cause further harm to already vulnerable communities.
- Quotidian forms of discrimination require outreach in an appropriate way that deals with the needs of at-risk communities. Instrumentalization of outbreaks must be avoided. In the case of Covid-19, raids were conducted on the homes of LGBT people in
Uganda, using legalistic and health justifications of pandemic management policies. There are lessons regarding the formulation and implementation of health responses, highlighting the need for a broader consideration of vulnerable communities in times of health emergencies.
- Trust and collaboration must be fostered, keeping in mind ethical guidelines even in technical discussions (see, for example, the WHO Ethics Guidelines on Public Health Surveillance with regards to contact tracing and medical data).
- Each actor at various levels has a responsibility to address the challenges to the general welfare and society. Identifying and taking up these responsibilities is the task of not only researchers, civil society actors, and public health authorities, but also experts, communicators, and policy-makers.
Although it is important not to equate the epidemiologies and experiences of different outbreaks, whether it is HIV, COVID-19, or MPOX, at each instance there is an opportunity and need to learn from errors and mishandling in terms of communication, policy formulation, and discourse. Vaccine equity and equal access to health services, mentioned by Stephen Molldrem for example, should be central to the discussion, as well as the involvement of vulnerable communities in responses to outbreaks, as Carla Saenz and Cleiton Euzébio de Lima highlighted. That we acknowledge the possibilities for further research and discussion on these lessons is vital for moving forward and confronting bleak future scenarios.