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Queer activist and international PhD student funding own brain surgery


Danish queer activist and University of Sydney PhD student Tanja Dittfeld was finally able to return to Australia after our borders reopened. At the time she thought her main concern would be to find accommodation and complete her thesis.

That was until the international student received a diagnosis of a brain tumour and that her health insurer would not cover it.

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Series of health shocks

Hailing from the land of Vikings, Tassie-born Princess Mary, and universal healthcare, Danish-born Tanja finds herself in the position of having to fund her own brain surgery.

On 23 October she diagnosed with a large pituitary tumour that can damage the brain and optical nerves.

“A tumour of this kind is normally less than 1 cm in size, whereas mine is 2.3 cms”, she said.

“I’m experiencing severe symptoms including visual impairments in both eyes, headaches, extreme fatigue, and vertigo”.

Two weeks after the diagnosis, Tanja was struck by another blow, a diagnosis of Cushing’s disease. This rare condition stems in her case from the tumour causing the excess production of cortisol.

“While it was upsetting to receive the Cushing’s diagnosis, it was also a relief to finally have an explanation for the physical, emotional and cognitive changes I’d been experiencing that left me feeling alienated from my own body and mind”, said Tanja.

“It has left me feeling weak, which is extremely confronting to someone who has always been very active with diving, hiking, running, and cycling. I am now struggling to cycle a few kilometres to university. My extreme fatigue and issues with concentrating make teaching and research difficult”, she said.

Tanja’s neurosurgeon has recommended urgent surgery because of the size and placement of the tumour which if untreated can lead to blindness. Without treatment, Cushing’s syndrome can be fatal.

A number of mishaps have led to Tanja’s current dilemma.

Initial physical symptoms were dismissed as dry eyes in Denmark in February this year, which led Tanja to believe she could safely return to Australia after being stranded overseas when Australia’s borders closed to the world at the start of the pandemic.

Yet delays by her university in reinstating the overseas student health cover has meant she is within the twelve-month waiting period for a pre-existing condition and would need to wait until March 2024 for surgery.  Since her specialists deem Tanja in need of emergency treatment, waiting is not an option – at least not without serious implications for her health.

Friends rallying around the activist and aspiring academic

Back in Denmark, Tanja’s friends and family are doing what they can to support her.

“I’m devastated by the news and I wish Tanja could get the surgery in Denmark without having to fight the system. You shouldn’t worry about whether or not you can afford to get life-saving treatment”, said close Copenhagen-based friend Christina.

Christina has set up a GoFundMe page to raise funds for Tanja’s treatment.

In Australia, Tanja’s friends and colleagues are also rallying around her.

“This absolute clusterfuck is embarrassing for Australia’s reputation and could potentially derail the career trajectory of a promising researcher who holds, ironically, a wealth of experience in health advocacy among vulnerable populations”, said Perth-based queer activist Duc.

Before embarking on a PhD, Tanja worked for fifteen years in Denmark, Thailand, Uganda, and Zambia with socially excluded and marginalised groups including sex workers, people living with and affected by HIV, people with disabilities, and LGBTQ+ populations.

Tanja came to Australia in 2018 to pursue her PhD about queer activisms in Uganda. She was conducting field work in Uganda when the pandemic hit and Australia closed its borders to the world. Uganda is the first country in Africa to simultaneously broaden criminal penalties to those who engage in same-sex acts, anyone who identifies as LGBTIQ+, and allies who in any way assist or promote LGBTIQ+ peoples.

But when the borders remained closed, she had to suspend her PhD and return to Denmark where she resumed her work in HIV prevention.

Australia’s borders eventually reopened, which saw Tanja returning to Australia in 2023 to resume her PhD. Her symptoms worsened until she received her diagnoses, followed by the decision from her health insurer.


Health system stacked against international students

“When I heard the health insurer wouldn’t cover either the surgery or the treatment for Cushing’s disease, I was shocked and in disbelief, overwhelmed by having to navigate the many health providers, daunted by the costs, frightened by the possible inability to have timely surgery and treatment as well as the potential loss of my capability to be who I am and want to be”, said Tanja.

Tanja makes just under $27,000 on her scholarship stipend, but all the medical costs could well be double that.

“After the news from Allianz, I considered getting on a plane back to Denmark for my urgently-needed treatment. However, the neurosurgeon had earlier advised against flying, which is why I had to cancel my flights to interstate conferences this month. He reiterated this advice when I asked again”, Tanja said.

International students facing serious health conditions away from home must navigate a fragmented healthcare system, which can create a barrier to services. For queer students this experience is especially fraught, given the difficult relationship that queer people traditionally have with healthcare systems.

“I’m acutely aware of my privileged position as a Danish citizen. And unlike some international students I have health insurance provided through a scholarship, though the insurance is useless to me right now”, Tanja continued.

“This country has a duty of care to anyone needing medical assistance within its borders, especially to those who cannot afford it.”

As a major export industry, international education adds $29 billion to the Australian economy, according to Universities Australia earlier this year.

Tanja has appealed her insurer’s decision, sought legal advice, and sent letters to various national and Danish authorities, as well as her university.

“No one wishes to be in this situation of having to fund their own brain surgery. But for many of us the system is broken, so here we are”.

Duc Dau


Do you need some support?

If you are struggling with anxiety or depression, support and counselling are available from:

QLife: 1800 184 527 / qlife.org.au (Webchat 3pm – midnight)
QLife are a counselling and referral service for LGBTQIA+ people.

DISCHARGEDinfo@discharged.asn.au / discharged.asn.au
Discharged is a trans-led support service with peer support groups for trans and gender diverse folks.

Lifeline: 13 11 14 / lifeline.org.au

Beyondblue: 1300 22 4636 / www.beyondblue.org.au


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