ACC declines cover for boy with OCD allegedly caused by acne medication Oratane

The acne medication Oratane - also known as isotretinoin - is being blamed for causing the boy's OCD.

One week, Harry Smith* was “everything a family could wish for in their child”. The next he was barely able to get out of bed, was washing his hands raw and spending up to six hours in the shower trying to get clean.

It was a switch he and his parents blame on obsessive-compulsive disorder (OCD), which they claim was triggered by the acne medication isotretinoin - also known as Oratane.

OCD is defined by the Ministry of Health as an anxiety disorder where a person experiences ongoing intrusive thoughts which can manifest as a need to perform certain rituals or behaviours over and over again.

Smith’s family sought cover from the Accident Compensation Corporation (ACC) to help pay for treatment for his condition. However, in order for ACC to provide cover for something like OCD, it must be proven that the illness was suffered because of a physical injury.

It’s this argument - that Smith’s acne medication turned him from a happy, healthy 14-year-old in 2016 into a boy anxious and obsessed with cleanliness - that has seen his family take his fight for treatment coverage to ACC again and again over the past seven years.

The drug the family claim is to blame for Smith’s condition was originally developed in the 1950s but was only marketed some 20 years later. It’s a synthetic derivative of vitamin A, which our livers ordinarily produce in small quantities. It is funded by Pharmac and is a prescription-only medicine.

In a decision released this week, ACC has again declined coverage on the basis there is no link between his illness and the acne medication he took for less than a month seven years ago.

The boy’s father told NZME he couldn’t comment as the matter was still under appeal, but said in submissions to the Wellington District Court that his son’s symptoms came on quickly after being prescribed the medication in 2016.

“Harry is very mature for his 14 years, polite, loving and caring, strong and happy. Everything a family could wish for in their child. Naturally, we are devastated at what has happened,” he said in his original application to ACC.

“Harry has not been able to concentrate nor attend school for two months, [and] gets stuck in the shower counting the wash times for up to six hours daily, similarly for hands. There are also many places throughout our home he won’t touch or have us walk, especially if he has been there or imagines there are germs present.

“The rituals are wearing him out and his hands are sore and fragile from washing, even with the best soaps.”

The boy has to wash his hands in multiples of six, and sometimes goes through entire bottles of soap. Photo / 123rf

The boy’s father said there were many places in the home he could not walk if he imagined there were germs present - otherwise he felt “grossly contaminated”.

His son slept a lot because he was afraid of going to the bathroom, knowing that each time, he could spend hours having to wash his hands.

“It’s jolly tough on him,” he said.

According to the summary of facts, Smith began taking the medication on May 20, 2016. Two weeks later, his face was extremely red and peeling and his lips were blistering. His dosage was reduced but the symptoms persisted, and a month later he stopped taking it altogether.

A month after that, his father contacted his doctor with concerns about the unusual behaviour of his son, who was taking excessively long showers and washing his hands for hours.

Smith, who was up until then a perfect student who fenced, played the piano and had a 98 per cent attendance record, could barely get out of bed and felt compelled to wash himself for hours, and any surface he touched. He’d use whole bottles of soap, scrubbed his hands raw and was extremely anxious.

His doctor lodged a claim for coverage by ACC on the basis the acne medication may have triggered his OCD.

After the boy 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 Smith’s OCD in May 2017.

However, Smith appealed the decision in 2018 and provided evidence from American psychiatrist Professor Douglas Bremmer, who said that based on other cases worldwide, there was a greater-than-50 per cent chance the medication caused Smith’s OCD.

Bremmer 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.

Professor Doug Bremmer gave evidence that the drug was more than likely the trigger for the boy's OCD.

“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.

“The mechanism by which isotretinoin causes physical injury in the brain leading to OCD is inhibition of hippocampal neurogenesis, altered gene transcription, changes in neurotransmitters, including serotonin and dopamine, and effects on the orbitofrontal metabolism leading to changes in the brain circuit, mediating OCD.”

He also said there was no history of psychiatric disorders in Smith’s family, he had no hint of having OCD before starting the medication, and the United States Food and Drug Administration had issued its own warnings with regard to the drug.

According to Medsafe - which regulates medicines and medical products in New Zealand - there have been 106 cases worldwide where isotretinoin had reportedly caused OCD. However, the cases were poorly documented and it hadn’t been possible to develop a hard link between them.

Medsafe also notes reports of the drug potentially causing psychosis, depression and suicidal thoughts, though again, a hard link was not established.

“Take care when prescribing isotretinoin to patients with a history of depression, and monitor all patients for signs of depression…” a Medsafe advisory notes.

ACC again declined to provide coverage in 2018. Its own experts said the relationship between isotretinoin and psychiatric problems “remains concerning, but not proven”.

Since that decision, and in a further appeal of ACC’s decision to the Wellington District Court, Smith’s lawyer, Ron Mansfield KC, argued that his client had no OCD symptoms before taking the medication and the link between the two events was supported by multiple medical professionals.

Ron Mansfield KC has taken on the boy's case. Photo / Alex Burton

Mansfield submitted that isotretinoin caused damage to his client’s brain neurons and refuted ACC’s claim that Smith was simply predisposed to developing OCD.

Judge Chris McGuire said “physical injuries” were not specifically defined under New Zealand law, but he took it to mean someone who had undergone physical damage or hurt.

He said it was necessary for Smith to prove he had suffered bodily harm or damage.

“It follows, therefore, that I find that the appellant’s mental injury, the obsessive-compulsive disorder, was not suffered by him because of ‘physical injuries’,” McGuire said in his ruling before declining the appeal.

NZME understands there is further pending legal action.

*Harry Smith is not the boy’s real name. It has been changed to protect his privacy.

Jeremy Wilkinson is an Open Justice reporter based in Manawatū covering courts and justice issues with an interest in tribunals. He has been a journalist for nearly a decade and has worked for NZME since 2022.