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Jul 16, 2020 • 17m 26s

Daniel van Roo spent 18 months trying to convince his doctors he was sick. As his undiagnosed cancer worsened, they continued to test only for STIs - he says because he was gay

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If you are queer - or care about queer people - listen to this story

266 • Jul 16, 2020

If you are queer - or care about queer people - listen to this story

RUBY:

From Schwartz Media, I’m Ruby Jones, this is 7am.

Daniel van Roo spent 18 months trying to convince his doctors he was sick. They continued to test only for STIs. By the time he was diagnosed with cancer, it was terminal.

Van Roo believes doctors ignored his symptoms because he’s gay - and they assumed any illness related to his sex life.

Today, senior reporter for The Saturday Paper, Rick Morton, on medicine, discrimination, and one man’s fight to know what was wrong.


RUBY:

Rick, can you tell me about Daniel van Roo? What's he like?

RICK:

He's a really sensitive, caring, kind soul. And he's just really lent into life, I guess.

Archival tape -- Rick Morton:

“Daniel Van Roo! How are you?”

Archival tape -- Daniel Van Roo:

“Good, thank you, Rick.”

Archival tape -- Rick Morton:

“Welcome.”

Archival tape -- Daniel Van Roo:

“Thank you…”

RICK:

The first time I met him, I was struck by how patient he was, I guess, in talking about his own story and himself, and how open and vulnerable I guess he was.

Archival tape -- Daniel Van Roo:

“I thought I was gonna live forever, as we all do…”

Archival tape -- Rick Morton:

“...Don’t we all…”

Archival tape -- Daniel Van Roo:

“Yeah. When you’re in your 20s…”

RICK:

Which you don't get a lot these days with people you've met for the first time. And I found that very striking.

RUBY:

Mmhmm. And this story is about Daniel's health. When did he first start to think that something might be wrong?

RICK:

The first time he told his doctor he thought there was a problem was in March 2015.

Archival tape -- Daniel Van Roo:

“I had been feeling very, very healthy. I rarely got colds or, you know, I didn't really need to ever see my GP for anything unusual…”

RICK:

He was studying a Bachelor of Psychology at this point and working full time as a hairdresser. And over the end of 2014, during the uni exams, he was just finding himself incredibly exhausted. And he thought maybe it was uni, but then the summer break came in and it stayed. And that started to worry him. So he took himself off to the doctor.

Archival tape -- Daniel Van Roo:

“It was the kind of change that you felt in your body. It's not like, you know, when you injure yourself, you've got a cut on your arm, and it's quite apparent, you know, he's sort of there thinking, is this something happening? What is happening…”

RICK:

Over the next 18 months, Daniel says that there were more than 14 different consultations with general practitioners at this one clinic in Surry Hills in Sydney. And he complained of this crippling exhaustion, but also unexplained abdominal pains, night sweats, weight loss, and groin pain near these swollen lymph nodes. And for a year and a half, he had these symptoms, and for a year and a half, they worsened.

Archival tape -- Daniel Van Roo:

“I was still trying to be fit and healthy, despite everything that was happening. So I woke up one morning and I went for a walk around Mrs Macquarie’s Chair thinking ‘maybe if I just try and walk this out, it’ll be okay, it’ll be okay’. And I got around to the Fleet stairs, and I was in so much pain that I doubled over and collapsed there and thought, this is not right…”

RICK:

And all the while, the other symptoms were getting worse or progressing and there were still unexplained. But his doctors routinely assessed his symptoms as being related to a sexually transmitted infection.

RUBY:

Right. And was that the case? Were they related to a sexually transmitted infection?

RICK:

No, they never were.

Daniel was tested - remember, he was there for 14 consultations over 18 months - and he was tested more than 50 times during those GP visits for sexually transmitted infections, despite never having a confirmed diagnosis of any STI. And this battery of tests, including blood and general chemical analysis, returned results in the abnormal ranges and concerning trends over that 18 months, that indicated something more troubling was taking place in his body. But he was never diagnosed. Those things were not followed up. And he was never referred for an ultrasound or even a C.T. scan in that time.

Archival tape -- Daniel Van Roo:

“There were many other non STI related tests that were done. The results were never considered.”

RUBY:

How can that happen? I mean, why and how could something like that happen?

RICK:

Daniel believes it’s because he’s a gay man. And the doctors assumed his decline must be the result of promiscuity. Essentially, he thinks he wasn’t given proper treatment because was dismissed as being gay. It’s this assumption that gay men have risky sex lives. But it’s a stereotype, and they focussed on STIs as an explanatory cause, to the exclusion of all of the other information that was coming in, including from other tests.

RUBY:

That's shocking.

RICK:

Yeah. It’s umm...It's bad.

RUBY:

And so what was actually wrong with Daniel?

RICK:

Well, on September 22nd, 2016, a year and a half after he first presented with these mysterious symptoms, he asked for a scan during a consultation that he had to book for himself. It took six days for Daniel to get an appointment. You know, even as the scan was being conducted, he could see on the faces of these imaging people that it was bad.

Archival tape -- Daniel Van Roo:

“Whilst I was in the machine, they saw how far along I was in my condition, and they could see that it was bad.”

RICK:

And they knew from the scans in real time how much his body had become riddled with what turned out to be stage 4B, non Hodgkin's follicular lymphoma. And he was diagnosed - officially - six days after that appointment.

Archival tape -- Daniel Van Roo:

“My spleen was so enlarged that it was pushing my diaphragm and compressing my lungs. And the lymph nodes throughout my inguinal area were so enlarged that they were pressing on nerves, which was what was making me collapse all the time…”

RICK:

As he put it to me, he was at the end at this point. You know, this was very late in the piece. And what really troubles him, and breaks his heart - and mine I have to say, having spent so much time with him over the past few weeks - is the fact that by the time he was diagnosed, his condition was terminal. You know, there was no stage five. There is no stage five. And he doesn't know - he can never know if he might have survived were he diagnosed when he first complained of the illness.

RUBY:

So... so what you're saying is that he knows that he's going to die and he knows that it's because of this cancer that he has.

RICK:

That's right. You know, there's no recovery from this stage of lymphoma, but had it been caught at stage one or stage two, it can be cured. And that's...I guess the psychological hinge on which this turns. I mean: what could have been?

RUBY:

We’ll be back in a moment

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RUBY:

Rick, Daniel van Roo spent 18 months trying to convince his doctors that something was wrong, only to find out that he did have advanced incurable cancer. So were there warning signs that that's what was happening?

RICK:

There were so many. Since March 2015, Daniel had nine tests for lymphocytes, which provide a clear pattern warranting investigation. His haemoglobin level was also in the abnormal range, and his alkaline phosphatase levels had jumped and were 11 points higher than acceptable. In this time, he lost 10 kilograms. His health was deteriorating, very obviously and very extremely. And there was no explanation available to his treating doctors about what that might be, which you would have thought would have warranted follow up.

RUBY:

So what was that like for him - to know that his health was deteriorating and know that something was wrong, but not really being able to get any answers as it's happening?

RICK:

We've got to put yourself in his position, right? Daniel has no training. He's not a doctor. And he didn't know what treatment pathway or a diagnostic pathway was actually appropriate. But he did know one thing for sure, and that was that his body was alien to him.

Archival tape -- Daniel Van Roo:

“You can imagine at this point I’m feeling very unsure of where to get help from. I've seen the doctor a lot. I'm collapsing on the street. I've got, you know, people picking me up out the front of Woolworths. I'm starting to doubt if there's anything wrong with me…”

RICK:

It was not general tiredness. He had known it wasn't that for more than 18 months. And his intuition was correct. He had incurable cancer. And so to fight this fight all the way through, to try and convince him of that, and never have been listened to only to find out that you were right and that now that time is gone and you can't go back and change that - that hurts.

And, you know, as much as the cancer is in his body now, there's pain, too, I think, mentally knowing what happened and that he wasn't believed. And at the end he's kind of started not believing himself, you know. And this happens when you’re so... you run up against these brick walls. And he started doubting the fact he's like, am I actually unwell or am I just thinking this all up? And, you know, to me, that's an awful situation to be put into.

RUBY:

Has Daniel been able to lodge a complaint or have this investigated in any way?

RICK:

Well, he's tried. In late 2019. He lodged a complaint with the New South Wales Health Care Complaints Commission. It's an independent authority that acts to investigate medical complaints across all levels of health in New South Wales and across three rounds of assessments and investigation. The commission dismissed Daniel's complaint three times.

Archival tape -- Daniel Van Roo:

“I very clearly asked them to consider my presentations over that period of time holistically instead of just in single appointments so that they could account for the trend. They effectively, completely ignored my request to do that.”

RICK:

The commission relied on apparently selective evidence, or portions of his medical records, and in some cases made statements of fact that were simply not true. Essentially, the compliance body backed the treating doctors on account of what it called his “previous history”.

RUBY:

And what did they mean by that - by his previous history?

RICK:

The report does not elaborate. But Daniel believes the health authority is supporting the doctors because they have, knowingly or otherwise, fallen back on this trope that gay men in particular have risky sex lives.

Archival tape -- Daniel Van Roo:

“When I was talking about these numbers to my heterosexual friends, the overwhelming opinion or comments that I was getting from them was ‘I've never had any STI tests, so why would they keep doing this to you?’”

RICK:

He had not had a history of STIs, so the only history he could imagine in this case was that he was having sex with other men, which is what gay men do.

Archival tape -- Daniel Van Roo:

“They were abundantly aware that I hadn’t had an STI return positive. So I can only assume that when they say ‘your history’ that they’re referring to be being a homosexual.”

RUBY:

And so does he feel then that he was let down first by his doctors and then by the authority that is supposed to investigate complaints about medical care?

RICK:

Absolutely. And not just let down, but. It's like they've chosen - particularly the HCCC, the compliance body - like they've chosen to respond to things that they could mount a case for, but have left out glaring errors in their own kind of assembly of the facts.

Archival tape -- Daniel Van Roo:

“So I'm not sure how they came to say that they're not going to investigate this because of these reasons when my medical records tell a completely different story…”

RICK:

And so when you've got all these different kinds of interpretations and facts that just aren't supported in the medical file that was supplied to him from the clinic - it’s their data - it is hard to believe anything other than you're being stonewalled.

Archival tape -- Daniel Van Roo:

“I realised after a few rounds with the HCCC that they weren't actually interested in my story. So then I started focussing as best I could, taking the emotion out of it, just on the data within my file. And they still weren't interested in that.”

RUBY:

If the Health Care Complaints Commission has dismissed his complaint, is there anywhere else that he can take it?

RICK:

The problem for Daniel is that legally he has no recourse. He has referred a complaint to the Australian Human Rights Commission, though, which is now investigating whether the clinic is responsible for indirect sexual orientation discrimination under its legislation. One argument that has been made by the clinic is that he should have read his own tests if he was worried - that he should have known what they were doing and they spoke to him about them anyway, which is unprecedented in terms of reversal of responsibilities for the patient to look for their own diagnostic pathway. I mean, how would you or I know enough to question these trained doctors in whom we trust?

Archival tape -- Daniel Van Roo:

“These different departments and the doctors have worn me down. And I just...I'm at a point where I can't do this on my own anymore. And I think that it's really obvious to me why… why there's very little accountability, because the systems that are in place don't support the person who's suffered the injustice.”

RICK:

The reality is Daniel Van Roo will never know if his cancer could have been cured or eradicated were it not for this 18 month long battle to convince his doctors that something was seriously wrong. His intuition told him something was wrong and he was right. And, you know, that's the thing that haunts him. The ‘what if’. He told me he tries not to think about it during the day to day, in the moment to moment these days. But when he does die, that is what he will be thinking about on his hospital bed.

RUBY:

That's so devastating.

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RUBY:

Also in the news...

Victoria recorded 238 new coronavirus cases yesterday, marking the tenth day in a row with a triple-digit increase in cases.

The Victorian Chief Health Officer Brett Sutton says the numbers are showing signs of "some stabilisation" following lockdown measures.

A woman in her 90s has become the 27th person in the state to die from COVID-19.

Meanwhile the number of cases associated with Sydney's Crossroads Hotel has grown to 30, and the cluster is now genomically linked to the Melbourne outbreak.

I’m Ruby Jones, this is 7am, see you tomorrow.

Daniel van Roo spent 18 months trying to convince his doctors he was sick. They continued to test only for STIs - he says because he was gay. By the time he was diagnosed with cancer, it was terminal.

Guest: Senior reporter for The Saturday Paper Rick Morton.

Background reading:

Exclusive: Doctors ignore terminal cancer in The Saturday Paper
The Saturday Paper
The Monthly

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7am is a daily show from The Monthly and The Saturday Paper. It’s produced by Ruby Schwartz, Atticus Bastow, and Michelle Macklem.

Elle Marsh is our features and field producer, in a position supported by the Judith Neilson Institute for Journalism and Ideas.

Brian Campeau mixes the show. Our editor is Osman Faruqi. Erik Jensen is our editor-in-chief.
Our theme music is by Ned Beckley and Josh Hogan of Envelope Audio.

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266: If you are queer - or care about queer people - listen to this story