Are Trans People at Greater Risk of Long COVID?
- Dec 21, 2023
- 7 min read
Updated: 4 days ago
Authors: Eli Ward-Smith and Dr Sav Zwickl.
Content Warning: Mentions of mental health, discussion of COVID-19 vaccination and COVID-19 illness.
Our TRANSform project was launched during the first nation-wide COVID-19 lockdowns and we have placed significant focus on capturing the experiences of our community during the pandemic. In a survey we conducted in May 2020, over 1000 trans and gender diverse people shared their experiences of the early months of the pandemic, including widespread job loss, financial strain, healthcare disruptions and mental health distress. These findings were published in the International Journal of Transgender Health, and the Trans in the Pandemic Report and shared widely with federal and state government, as well as media (e.g. ABC News and SBS).
In May 2022, we followed up with the same group of trans people (516 responded), to assess how they were fairing over two years into the pandemic. In addition to mental health impacts, this time we also focused on rates of COVID-19 testing, vaccination, and infection.
The findings were published in the Medical Journal of Australia in 2023, and one of the key findings was that while trans people are more likely than the general population to have received three COVID-19 vaccine doses, they are also more likely to report long-term symptoms of COVID-19 infection.
What is Long COVID?
Long COVID is a term used to describe both:
Ongoing symptomatic COVID-19 – COVID-19 symptoms lasting more than 4 weeks
Post-COVID-19 condition/syndrome – COVID-19 symptoms after 12 weeks that are not explained by an alternative diagnosis.
Long COVID can present differently in different people and symptoms can range from mild to severe.
The Australian Institute of Health and Welfare report that the most common symptoms with Long COVID are fatigue (tiredness), shortness of breath, and problems with your memory and concentration (‘brain fog’).
There are also many other symptoms, including heart palpitations, chest pain or tightness, cough, changes in taste or smell, joint and muscle pain, pins and needles, problems sleeping (insomnia), changes in mood (increased worry, anxiety, or depression), dizziness, headache, low-grade fever, skin rashes, hair loss, nausea, diarrhoea, stomach aches, and loss of appetite. A recent study also found additional symptoms including sneezing, ejaculation difficulty, and reduced libido.
No matter how severe, Long COVID symptoms can have a significant negative impact on quality of life and one’s ability to engage in study, work, leisure, and relationships. For example, a trans woman who completed our survey shared her experience of severe and long-term health issues following COVID-19 infection:
“Long COVID made me so sick I couldn't do things like go to the doctor, and my [gender-affirming hormone therapy] was disrupted for a while.... It kind of hurts seeing people get back to life ‘as normal’ while my life has been trashed. It has also been a uniquely isolating experience as a trans woman... I have had more trouble with misgendering since being sick. I don't know, I guess I don't look as femme when I am haggard from illness and can't take care of my appearance.”
Why are trans people at higher risk of Long COVID?
In our study of 516 trans Australians, 37% of those with previous COVID-19 illness reported long term health consequences of COVID‐19 (e.g., fatigue, brain fog three or more months after acute illness). This is much higher than the estimated 5–10% of the general Australian population who report such symptoms after COVID‐19 illness.
This finding is similar to the experiences of trans and gender diverse people in the USA. In the Household Pulse Survey conducted by the Census Bureau in December 2022, 46% of trans respondents reported experiencing long term COVID symptoms, compared to 32% of cisgender women and 22% of cisgender men. Trans people also reported severe Long COVID symptoms at more than four times the rate of cisgender women and cisgender men (Figure 1).
Figure 1. Findings from the Household Pulse Survey (Source: Census Bureau). As outlined in the bar charts above, you can see that respondents were limited to 4 gender options: ‘Cisgender Men’, ‘Cisgender Women’, ‘Trans People’ or ‘Other’ (“none of these”).
The evidence base regarding Long COVID is evolving, and we do not entirely understand the mechanisms behind it. We do know that some marginalised groups, including those in the trans community are at higher risk of severe long-term symptoms. This is likely for two reasons.
Firstly, the trans community experience high rates of chronic health conditions and disease and mental ill-health. This high prevalence is related to social factors and minority stress which are known to negatively impact both physical and mental health. Health conditions or disease and mental ill-health prior to COVID-19 are both known risk factors for Long COVID.
Secondly, the trans community experience unique barriers to accessing health care. This includes difficulty finding a trans-affirming doctor, and previous or anticipated negative experiences; over half of our survey respondents reported one or more experience of health discrimination since the start of the pandemic.
The impact of factors like chronic health conditions, mental ill health and barriers to accessing health on the experience of Long COVID for 14 people was demonstrated by researchers in Australia. They found that people who felt a greater sense of ‘agency’ or control over their healthcare, combined with higher levels of social support, reported a “better experience” managing their symptoms of Long COVID. Those with lower ‘agency’, and who felt lonely or isolated, had a harder time coping with their Long COVID symptoms.
How can trans people protect themselves from Long COVID?
The best way to prevent Long COVID is to protect yourself from getting COVID-19. Reducing the risk of infection may involve avoiding high-risk settings such as crowded indoor areas, maintaining physical distance from other people, maintaining good hygiene including use of hand sanitiser, and wearing masks where possible. These prevention measures have been increasingly difficult to follow as we have eased social restrictions and there is widespread transmission of COVID-19.
For some trans people, the risk of COVID-19 infection and serious illness is too great, forcing them to limit their access to public spaces and in-person gatherings, including LGBTIQA+ community events and support groups. There are many people who feeling anxious, frustrated, and isolated by the lack of precautions to minimise spread of COVID-19. For example, a trans non-binary person shared with us how:
“As a disabled person, I feel increasingly isolated from abled queer and trans community members who are taking less and less precautions to keep vulnerable community members safe.”
When worn correctly, masks (particularly N95 respirators) have been shown to reduce the airborne transmission of COVID-19 and other respiratory pathogens. This extensive review of the science mentions the ‘dose-response effect’ of wearing a mask: greater adherence to the practice, leads to increased protection against respiratory infection.
Vaccination provides protection against severe illness from COVID-19 in a couple of ways. All COVID-19 vaccines that are available have consistently been shown to provide protection against severe illness, and potentially Long COVID. However, vaccination will not prevent the transmission of COVID-19 altogether. This demonstrates an important difference between COVID-19 and other contagious diseases that have been controlled through herd immunity, such as smallpox and rubella. Herd immunity can be achieved when enough people have either been infected with or vaccinated against a disease and developed protective antibodies against future infection. This prevents transmission of the disease in communities. The rapid mutation of SARS-COV-2 variants means that control of COVID-19 through herd immunity is not possible.
The first COVID-19 vaccines targeted the original strain of the SARS-COV-2 virus. Studies have shown that over time, the initial effectiveness of COVID-19 immunisation reduces, and ‘booster’ doses are recommended according to a person’s risk of severe illness from COVID-19.
Hybrid immunity (where people have immunity from vaccination and past infection with COVID) has emerged as a potential protective factor against severe illness from COVID-19. Research has suggested that this complex immunological phenomenon can be maintained through vaccination and the general Australian population’s immunity provided by previous COVID-19 infections. However, for community members at high risk of severe illness due to COVID-19, hybrid immunity cannot be solely relied upon to reduce the risk. It must be combined with vaccination, use of masks and hand sanitiser, and strategies such as maintaining physical distance from other people, adequate ventilation and avoidance of high-risk settings.
While studies overseas indicate social stigma, fear of discrimination, and mistrust of health care professionals contributed to COVID‐19 vaccine hesitancy among trans people, in Australia trans people showed up in large numbers to receive their vaccination. As of May 2022, 87% of trans people who completed our survey reported having three or more COVID‐19 vaccine doses, compared to 70% of the general population. These high rates of vaccination are likely due to vaccines being more accessible and less politicised than in many other countries. Additionally, there were also some targeted vaccination campaigns and promotions, such as the Victorian Government #FabJab initiative with its pop‐up LGBTIQA+ vaccination clinics and specific advice being made accessible on the TransHub website in New South Wales.
An important reason to keep up with COVID-19 boosters is to maintain protection against the new variants of COVID-19, as well as to potentially protect our community members who are at higher risk of severe illness from COVID-19, and Long COVID.
Newer vaccines target current circulating strains and are now considered the preferred COVID-19 vaccines, depending on your age range, and whether you are immunocompromised. As we head into summer with more opportunities for catch-ups with friends and family of all types, now is a good time to consider if you are due for your COVID-19 booster. You can find a list of local GP clinics and pharmacies to get vaccinated here (select ‘COVID-19 vaccine clinic’ and enter your suburb/ postcode’ to see a list of pharmacies near you).
Finally, if you do get COVID-19 and are at high risk of becoming very sick, it is important to have a plan in place with your GP or nurse practitioner. Treatment with oral antivirals has been shown to help reduce the risk of severe illness and possibly long COVID. Oral anti-viral treatments are now much more widely available than early in the pandemic and are low-cost. For people who are eligible for oral anti-virals, treatment needs to be started within the first 5 days of getting sick, so it’s important to reach out to your GP or nurse practitioner as soon as you suspect you have COVID-19 or return a positive RAT test.
If your budget will allow, it's also a good idea to stock up on masks and combined RAT tests that test for COVID, RSV (Respiratory Syncytial Virus, and Flu A/ B. You can take steps to make your next catch up with family or friends COVID-safer, by:
Testing beforehand and staying home if unwell.
Wearing a mask if you are able, when indoors and not eating/drinking.
Meeting outdoors or in a well-ventilated space.
If you are planning a community event, be intentional about your COVID accessibility plan and communicate it as part of your event marketing strategy (N95 masks, sanitiser stations and air purifiers if an indoor space).