Intersex Human Rights Australia

COVID-19 can infect any individual, irrespective of age or health but its impact exacerbates existing inequalities. All populations that suffer health inequalities are disproportionately affected, and people with intersex variations are no exception.

Current health is determined to some extent by biological factors, for example:

• People with congenital adrenal hyperplasia can face severe risks associated with stress and infection.
• Many people with intersex variations are at risk of metabolic syndrome.
• People with intersex variations, particularly those with sex chromosome variations, can sometimes have cardiovascular issues or, more rarely, renal issues (Department of Health & Human Services 2019; Intersex Human Rights Australia 2019).

Each of these are risk factors for severe outcomes following infection with COVID-19. Some of these risks can be addressed by ongoing access to healthcare while others can be managed with effective treatment. However, health is also socially determined (Commission on Social Determinants of Health 2008):

• Experiences of stigmatisation, discrimination and trauma in medical settings mean that many people with intersex variations avoid healthcare, with adverse consequences for their health (Lee et al. 2016, 170; Johnson et al. 2017).
• An Australian 2015 sociological study of people born with atypical sex characteristics found that respondents experienced relatively high levels of poverty and high rates of early school leaving (Intersex Human Rights Australia 2016). Early school leaving was felt to be associated with a range of issues, including developmental delays, bullying on the basis of students’ sex characteristics, and adverse consequences of medical interventions during puberty. Low socioeconomic status is itself associated with poor health. There is a possibility that intersex people may be more at risk of precarious employment and housing circumstances due to the prevalence of low socioeconomic status.
• Many people with intersex variations live with some degree of social isolation. This includes isolation from people with similar characteristics, and distance from family members. Together with experiences of trauma and stigma, these create additional risk for poor mental health in the current turbulent times.
• Access to medication has, in some cases, become constrained by supply chain disruption, and in other cases diverted, for example, in the cases of hydrocortisone and dexamethasone (used by some people with congenital adrenal hyperplasia) (Mahase 2020).

These issues create risks of worse outcomes associated with COVID-19 infection. They also create risks of constrained access to ICU beds and critical care if or when those resources become scarce. Ethical frameworks developed by experts at Sydney University’s Sydney Health Ethics and at Macquarie and Wollongong universities have sought to address discrimination on grounds of disability, but these vitally important values are in tension with other values that seek to most effectively use scarce resources by accounting for current and potential future health circumstances (Sydney Health Ethics 2020; Rogers and Carter 2020). This inherently disadvantages populations that have poorer health due to stigma, discrimination and other social determinants.

Some commentators have suggested that people with preexisting health conditions are expendable, or have suggested that saving avoidable deaths should not come at the cost of “destroying society” (Downer 2020). Policy makers must be wary of such attitudes: they undermine the moral values that are claimed to be the basis for our societies, and they destroy the existing social contract.

Previous epidemics, including Ebola, Zika, SARS and MERS, have largely affected non-Western or middle and low income countries. COVID-19 demonstrates the fallacy of assuming that management and elimination of epidemics can be left to other countries. Action to address public health issues must pay attention to the health and wellbeing or vulnerable people in our own society, and also the situation of people in other countries and regions. Our societies must become ready for future public health emergencies.

For community members

Follow public health orders in your State or Territory. Follow advice on staying at home whenever practicable, physical distancing, good hygiene, and hand-washing.

Support friends and family members where you can. This could mean shopping for someone – this need not require physical contact, you can drop stuff off at someone’s front door. It could mean phoning or chatting online.

Join in with our regular Zoom catch-ups, every Tuesday and Thursday lunchtime.

Create a plan for your dependents and pets.

Share material from authoritative sources.

For policy-makers

We welcome efforts to increase the availability of critical care and telehealth, support other essential services, and develop effective treatments. We hope that this will lead to permanent improvements in our health and public health systems. We hope that our manufacturing and essential services can be made more resilient. We recognise the importance of previously poorly acknowledged workers – cleaners, supermarket staff, transport works. We recognise the particular challenges faced by all these essential service workers and we offer our profound thanks and gratitude. We don’t wish to return to a situation where these roles are neglected and poorly resourced.

We welcome the increase in JobSeeker and the creation of the JobKeeper allowance. We understand that these and a range of other measures to support individuals and families are being framed as temporary measures, but they also show how social supports necessary to tackle an urgent public health issue arise out of the political choices that we make as a society. We do not wish to return to a status quo that accepts the inequalities that we are now suddenly able to address.

Support for disability pensioners and casual workers must be increased in line with support for other individuals.

We welcome the new resourcing for businesses and charities. As we experience on an individual scale, these measures exacerbate existing inequalities – channelling resources to large institutions that have no demonstrable capacity to work with intersex populations. Intersex health and human rights issues are not new, they are only poorly recognised due to a lack of resourcing. This too must be addressed.

It is not possible to wash our hands of vulnerable and stigmatised populations, wherever they may be.

For allies

Being inclusive means paying specific attention to the health needs and circumstances of people with intersex variations.

Presentation

On 29 April, Morgan Carpenter gave a presentation on the impact of COVID-19 on intersex people for the National LGBTI Health Alliance. Watch here.

Update, August 2020

This is an update on COVID-19 and Intersex Human Rights Australia.

As of August, Intersex Human Rights Australia Ltd is registered with the NSW Government as a COVIDSafe business. This means we have made a commitment to protect all our staff, clients and community members from COVID-19.

Some businesses are required to complete a COVID-19 Safety Plan under Australian public health orders, but at IHRA we have chosen to voluntarily complete one.

We have based our COVID-19 safety plan off of the NSW Business Guidelines, but is broad and applies to our staff and board members in all areas of Australia.

All IHRA staff work from home because we have never had the resources for any physical office workspace. Because IHRA already has a remote or ‘virtual’ office, our COVID-19 guidelines are straightforward.

The main points in our COVID-19 Safety Plan are:

• No face-to-face team meetings, board meetings or events are to be undertaken, and no interstate travel for work reasons will be permitted, until deemed safe by state and national government legislation;
• Meetings and events to take place via online meeting software only;
• Staff continue to work remotely from home;
• Payments and invoices are to be made contactlessly;
• Ensure staff are aware of their leave entitlements, should they become sick or unable to work.

References

Commission on Social Determinants of Health. 2008. Closing the Gap in a Generation: Health Equity through Action on the Social Determinants of Health. Geneva: World Health Organization. https://www.who.int/social_determinants/thecommission/finalreport/en/

Department of Health & Human Services. 2019. ‘Health and Wellbeing of People with Intersex Variations Information and Resource Paper’. https://www2.health.vic.gov.au/about/publications/policiesandguidelines/health-wellbeing-people-with-intersex-variations-information-resource-paper

Downer, Alexander. 2020. ‘Alexander Downer on Twitter: “We Either Save Avoidable Deaths & Destroy Society OR Accept Avoidable Deaths & Save Society. The Moral Dilemma of Our Time.” / Twitter’. Twitter. April 7. https://twitter.com/AlexanderDowner/status/1247498933842018305

Intersex Human Rights Australia. 2016. ‘Demographics’. Intersex Human Rights Australia. July 28. https://ihra.org.au/demographics/

———. 2019. ‘Response to the Victorian Paper on the Health and Wellbeing of People with Intersex Variations’. https://ihra.org.au/35611/response-to-the-victorian-paper-on-the-health-and-wellbeing-of-people-with-intersex-variations/

Mahase, Elisabeth. 2020. ‘Covid-19: Hydrocortisone Can Be Used as Alternative to Dexamethasone, Review Finds’. BMJ 370 (September): m3472. https://doi.org/10.1136/bmj.m3472.

Rogers, Wendy, and Stacy Carter. 2020. ‘Ethical Considerations Regarding Allocation of Ventilators/ICU Beds during Pandemic-Associated Scarcity’.
https://documents.uow.edu.au/content/groups/public/@web/@socs/documents/doc/uow264048.pdf

Sydney Health Ethics. 2020. ‘An Ethics Framework for Making Resource Allocation Decisions within Clinical Care: Responding to COVID-19’. https://www.sydney.edu.au/content/dam/corporate/documents/faculty-of-medicine-and-health/research/centres-institutes-groups/she.-clinical-ethics.-resource-allocation-framework.-version-1.-2-april-2020.pdf