John’s water bill costs him roughly $400 every month because his son regularly takes five-hour showers every single day.
He will often get stuck in the water, trapped there by the fear of removing himself from a clean environment and stepping into a world filled with bacteria teeming on every surface.
In his mind, every door handle, every towel, every tap and tabletop is festering with germs. Showering or washing his hands until they’re red and raw are only some of the ways he copes.
The soap dispenser must be pumped a certain number of times as part of a handwashing ritual that has him go through a litre of soap a day.
He also has a full load of washing to do every day because every few hours he needs to change his clothes for fear they’ve become unclean in the time he’s been wearing them.
But the real toll on Harry (not his real name) and his family can’t be measured in litres of soap or water.
“I haven’t been able even to touch my son in nine years,” his father, John, tells NZME.
“No hugs, not an arm around the shoulder, not even a handshake.”
Every night since his son was little, John would go into his room and wiggle his son’s big toe as a kind of goodnight ritual.
“It’s a small thing, but it’s the small things like that I miss the most,” he says.
He tries not to even hug his daughter in front of her brother because of the distress it causes him, knowing it’s something he can’t do anymore.
John said his son has to be careful about what he touches.
“We can’t touch something that he’s just touched. For example, if he sits on a particular seat, we can’t use it.”
His behaviours are hallmarks of severe obsessive-compulsive disorder (OCD), a crippling mental illness that is made worse for Harry and his family because he wasn’t always like this.
Nine years ago, he was a typical 14-year-old boy excelling at almost everything he tried his hand at, from piano to fencing to academics. As his father put it, he was “everything a family could wish for in their child”.
Like many teenage boys, Harry had acne and began taking a prescription-only acne medication called Isotretinoin, which is marketed worldwide under a raft of brand names and comes with a 10-page warning from Medsafe about potential side effects.
While Medsafe notes there have been more than a hundred reported cases worldwide of people developing OCD after taking the medication, it doesn’t consider there to be a link between the drug and the illness.
Because of this, John has been fighting to get cover from the Accident Compensation Corporation (ACC) because he claims his otherwise-healthy son was injured, possibly irreparably, by taking the drug.
If he can prove it in court, it could be a precedent-setting world first.
‘They are infuriated by the approach taken by the corporation’
Harry first began taking the medication in May 2016, but two weeks later his face was red and peeling and his lips blistering. Even though his dosage was reduced, his symptoms persisted and he stopped taking the drug a month later.
By early June, Harry was exhibiting strange behaviour. He wouldn’t sit in the car unless a towel was placed on the seat first, nor would he touch the buttons on the vehicle’s dashboard.
Things escalated quickly from there for Harry, and his doctor lodged a claim for coverage by ACC on the basis the acne medication may have triggered or caused his OCD.
After the teen saw multiple specialists, ACC ultimately concluded the link between the acne medication and the development of his OCD was “weak”, especially given it had surfaced six weeks after he stopped taking it.
On the basis of that advice, ACC declined coverage for Harry’s OCD in May 2017.
Since then, John has tried to fight that decision in courtrooms in various jurisdictions as ACC declines to cover his illness again and again.
However, in 2025 John had a legal win in his ongoing fight and was granted leave to appeal the decision by the High Court at Auckland.
John’s counsel, top criminal defence lawyer Ron Mansfield KC, who is taking the case on Legal Aid, told the High Court in Aucklandthe drug had effectively ruined Harry’s life and that he’s had to grapple with his condition since the age of 14.
“He wanted a quicker result. It’s ACC opposing everything that has seen the delay,” he said.
“They are infuriated by the approach taken by the corporation.”
Mansfield’s argument is that the acne drug damaged Harry’s brain in a single event and he was, in essence, accidentally injured by it and should be provided state-funded care.
“Physical changes to the brain that cause harm are a physical injury. Whether they are microscopic does not matter,” Mansfield said in his submissions to the court.
ACC lawyer Luke Hawes-Ganda, said in his submissions numerous medical experts had found there was “no accepted causal link between Isotretinoin and psychiatric disorders generally, let alone OCD”.
“Further, the law is clear that, since OCD is a mental injury, it can only be covered if it is suffered because of a physical injury, and apart from various speculative theories, there is no evidence whatsoever that the applicant has suffered any physical injury.”
Hawes-Gandar said Harry had always faced an uphill battle to obtain cover, but it was thoroughly considered by ACC nonetheless and had been declined at every turn.
Harry’s next fight will be at the district court again, after a judge granted him leave to appeal the decision to decline cover in 2023.
Ordinarily, this would go to the High Court, but both parties have agreed to hear it in the district court again because of high wait times in the higher jurisdiction. A court date is yet to be set at the time of writing.
Depression, suicide and behaviour disorders
Isotretinoin was developed in the 1950s, but was marketed only about 20 years later. It’s a synthetic derivative of vitamin A, which our liver produces in small quantities. It is funded by Pharmac and is a prescription-only medicine.
According to Medsafe, 106 cases of OCD in association with isotretinoin have been reported worldwide, but these cases were poorly documented, and in 2018, its Medicines Adverse Reactions Committee found there was insufficient evidence to say there was a causal relationship between the drug and mental illness.
However, it does come with a lengthy list of warnings.
Among those are the possibilities of getting hepatic impairment (hepatitis), renal failure, plus depression, suicidality, and behavioural disorders have been reported in patients who have taken the drug.
After Auckland teenager Hugo Wilkinson took his own life in the early 2000s, Coroner Sarn Henderson recommended the drug’s manufacturer revise its patient information to include explicit warnings about the potential psychological and psychiatric side effects, “including behavioural disorders and depression as well as appropriate precautionary information pertaining to depression psychosis, suicide and attempted suicide”.
Hugo had been taking Roaccutane (an acne medication containing isotretinoin) for three months before his death and his parents told a coroner in 2002 that they believed the drug had contributed to his rapidly deteriorating mental state.
The Wilkinsons said Hugo’s symptoms developed after he started taking Roaccutane in March 2000. He became paranoid, introverted and a slow-talking young man.
“[He became] haunted,” his mother said at his inquest, “He walked around the house like a ghost.”
In the past 20 years, there have been other mentions of the drug in coroners’ findings, but none have found there was any specific link between it and mental illness.
One teenager began taking the drug in 2008, and a day later rang his doctor to ask about depression and its association with the drug, and was advised to call back if he had any symptoms.
After that teen took his own life, the coroner found evidence about a link between the drug and depression and suicidal ideation was so far incomplete.
“The casual relationship has not been actually demonstrated.”
“Nevertheless, major depression and suicidal ideation occurring as an idiosyncratic reaction to the medication remains a possibility, although this is a rare occurrence.”
However, he did forward a copy of his findings to the Centre for Adverse Reactions Monitoring.
Another teen who took his life in the same year had also been taking the drug a month before his death; however, a coroner noted people with severe acne were generally more prone to depression anyway.
In 2010, a 40-year-old man was prescribed the drug a month before his death. He tried to contact an acute psychiatric response team over the phone, but they determined he didn’t need to be physically checked over.
He took his own life a week later, and the drug was not mentioned as a potential contributor to his decline in mental health.
In the United States, the family of Charles Bishop, who crashed a stolen plane into an office tower, attempted to sue the maker of the drug, Roche, for US$70 million ($156m). They alleged the drug, sold in the US as Accutane, caused the Florida teenager to commit suicide. However, the lawsuit was dropped in 2007.
According to information released by ACC under OIA, since 2005, there have been a total of 46 claims made where isotretinoin has been cited as the causative or contributing agent.
Of those, 19 have been accepted by the corporation for a range of adverse reactions to the drug, including allergic reactions, cataracts, deafness/tinnitus, dry eyes, inflammation, scarring or thoracic spine damage, with the total combined payout being $235,092 to those successful claimants.
A ‘weak’ claim
One of the leading researchers on the relationship between Isotretinoin and psychiatric disorders, Doug Bremner, gave evidence in support of Harry’s application to receive ACC-funded cover for his illness.
He said based on other cases worldwide, there was a greater-than-50% chance the medication caused the OCD.
Bremner said OCD was caused by changes in the brain, often due to physical injury, and provided pages of his own research to support his claims.
“In summary, no reasonably scientifically informed person would conclude that OCD is not caused by changes in the brain that are equivalent to physical injury, or that the brain areas outlined are not involved in the disorder,” he said in his affidavit to ACC.
“… I think there is sufficient evidence within a reasonable degree of medical certainty that there is a causal relationship between treatment with Isotretinoin, OCD and physical injury to the brain and that more likely than not, this occurred in the case of [Harry] in whom there was a clear temporal relationship between the administration of the drug and onset of OCD symptoms.”
In a recent study, Bremner analysed reports of psychiatric side effects to the United States Food and Drug Administration Adverse Event Reporting System (FAERS) that listed Isotretinoin as a possible cause.
The data, spanning from 1982 to 2023, found Isotretinoin was associated with 28,951 reports of psychiatric disorders, compared with a topical acne cream called minocylene that had 796 reports over the same period.
“Isotretinoin was associated with a higher number of events for all events, including suicidal ideation (4902 v 45), completed suicide (757 v 38), and depression (14,988 v 132), as well as violence, aggression, mania and psychosis,” Bremnerfound.
“In conclusion, we found that Isotretinoin is associated with a higher number of reported psychiatric side effects than another medication used for the treatment of acne.”
Over the years, ACC has sought the opinions of several expert witnesses, including the now-retired head of the Centre for Adverse Reactions Monitoring (CARM), Professor Michael Tatley, who said there were anecdotal reports of people developing OCD from taking the drug, but there was no hard link between the two.
“This does not necessarily imply that there is no association, but rather that there is an absence of robust scientific evidence to be confident about the direction of an association,” he said.
Psychiatrist Mark Davis said the cause of OCD was not fully understood and that it is thought to be the result of a combination of “neurobiological, genetic, behavioural and environmental factors” and could develop spontaneously, especially among teenagers.
Davis suggested there were three possibilities in this case. That the appellant’s OCD had developed spontaneously and independently of the Isotretinoin; that it had been caused by the Isotretinoin through some unknown mechanism; or that the OCD was an underlying condition that had been triggered by the medication.
Another report was obtained in 2022 by psychiatrist Dr Patrick Daniels, who also said there was no established link between the medication and OCD.
However, he said it could have been a factor that contributed to the onset of the mental illness, but it was less likely that it was to blame for the ongoing effects of the OCD.
“… it is also likely that had it not been for the use of Isotretinoin, [Harry] would still have developed this disorder.”
ACC clinical lead treatment injury senior medical adviser Dr Peter Jansen said for ACC to approve cover for a mental injury, it needed to be shown there was a physical injury suffered from actual bodily harm.
“That has not been shown in this case or in the scientific materials referred to by Dr Bremner. It is not an idea supported by the pharmacovigilance expert, Dr M. Tatley, and there is nothing in the medical records to point to a physical injury from treatment, from which the mental injury has developed,” he said.
Jansen said the second problem was the association between Isotretinoin and OCD was “weak in any case” and “not even close to an argument for causation”.
University of Auckland senior law lecturer Nikki Chamberlain specialises in complex litigation and regulatory responses to mass harm, and says there are three ways that a person can get ACC cover for a mental injury: trauma from crimes being committed against them, injury suffered in the workplace or a mental injury derived from a physical injury.
To prove the third instance, a person has to prove their mental injury has been materially caused by a physical injury of some kind.
“If they can’t establish a material causal link, then they won’t get cover,” she told NZME.
Chamberlain said the family in this case could choose to sue the pharmaceutical company directly, but this would probably be an expensive and lengthy process through the courts.
“Interestingly, if this were to be covered by ACC in the end, then the drug company wouldn’t have to pay compensatory damage for their mistake,” she says.
Chamberlain says if the family were to win in court, it could set a precedent for similar claims.
“What you might see is more claims being lodged in this area and it may mean that more of those are successful without being challenged.”
“If it’s proven that there is a link, there could be pressure on the company to withdraw the drug as well.”
‘His life basically came to an end at the age of 14’
It’s estimated 1% or 2% of the population have some form of OCD, but it comes in varying degrees of severity.
Marion Maw, of OCD NZ, told NZME obvious kinds of OCD, like the long showers and obsessive handwashing, were generally picked up more quickly, but more internal obsessions were harder to diagnose.
“A lot of OCD is not visible. You don’t necessarily know someone has it unless they tell you.
“But there’s a range of severities; for some people, it’s just this little thing they do, and some people live like that their entire lives.”
Maw said it was unusual for people to get ACC cover for OCD, but it wasn’t unheard of if their condition was triggered by a traumatic incident.
In terms of helping people with the illness, Maw says there should be courses that parents or family members can do to help their loved ones.
“The studies actually show that one of the important factors of if people get better or not is actually in terms of the families.”
For John and his son, their claim to the corporation might be considered weak by ACC’s expert witnesses, but the effects they feel are something they both live with every day.
“You take a deep breath and say ‘Well, I’ve got to fix this’,” John says.
“That’s what I had to do at the beginning, work out what had happened and help get my son’s life back on track again.”
John said he wanted a normal life for his son, as any father would want. Now his goals are much simpler.
“His goals are now very basic goals, like being able to come into the lounge and talk.
“He doesn’t play the piano anymore because he’s afraid of touching the keys.”
Instead, Harry spends much of his time at his computer, playing chess or gaming, because he knows no one else will touch the keys.
“I think he misses what could have been. He should have been finishing law school this year,” John says,
“He doesn’t dwell on it, but he misses the fact he didn’t have that opportunity.”
Now, a good day for him is going for a drive to look at the ocean.
“He knows his life is on hold … His life basically came to an end at the age of 14.”
– Jeremy Wilkinson, Open Justice reporter
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