Jai Arrow reveals he is taking HIV medication to fight a debilitating neurological condition so he can watch his daughter grow up

Jai Arrow has revealed he is taking HIV medication and using hyperbaric chambers and red light therapy as he throws everything at his fight against Motor Neurone Disease.

The former South Sydney and Queensland forward said his determination to slow the disease is driven by his young daughter and his wish to witness milestones like her first day at school and wedding.

Arrow detailed his extensive treatment plan during a candid appearance on the Chats from a Chair podcast with Nick Dempsey.

Alongside medication prescribed by his neurologist, Arrow is following a high-protein, anti-inflammatory diet and focusing on stress management.

There is currently no cure for MND, and hyperbaric chambers and red light therapy are not established treatments for slowing the disease. Arrow described them as part of his personal holistic approach alongside medical care. 

His regimen includes a medication most would not expect to be used against MND. 

The 30-year-old said remaining present for his young daughter now matters more than winning an NRL premiership 

‘I don’t have it, mind you, but I’m on HIV medication,’ Arrow said.

‘Why? I don’t know. I just got told to do it.

‘I’m doing what the neuro has told me to do.’

Arrow said he understood the medication was intended to suppress activity within his body.

Antiretroviral drugs designed for HIV have been investigated as a possible treatment for MND, based on a theory involving HERV-K, an ancient retrovirus embedded in human DNA. 

Researchers believe HERV-K may become reactivated in some people and contribute to motor neurone damage.

The HIV drug Triumeq has previously been tested in people with MND, though Arrow did not identify the antiretroviral medication he is taking.

An early Australian study found Triumeq was well tolerated and showed promising changes in functional decline and breathing capacity. Researchers stressed that larger trials were needed to establish if it could delay progression. 

Arrow said his determination is driven largely by his daughter and milestones he fears the disease could prevent him from witnessing

South Sydney and Gold Coast put their rivalry aside to give Arrow an emotional return in front of family and supporters

Arrow also said he was taking riluzole and edaravone, two medications used to slow progression in some forms of MND. 

According to MND Australia, riluzole may prolong survival by an average of six to 19 months, while edaravone may help some people preserve physical function for longer.

Arrow said he was combining the medications with a broader approach to his health.

‘I’m on them, but also taking a holistic approach,’ he said.

‘Hyperbaric chambers. Red light therapy.

‘The biggest thing, I think, the two biggest killers, well three, one is stress management, diet, food you eat, then high-protein, anti-inflammatory diet. And people give up.

‘And I have control over them.’

Arrow revealed he had been denied a place in a clinical trial because of concerns about his liver function.

He received his official MND diagnosis on May 14 following several months of neurological testing

The former NRL enforcer declared he would continue fighting and refused to ask why the disease struck him

He said the problem was now under control and hoped he would soon be cleared to take part in experimental research.

‘Very soon I’ll be, I guess, a lab rat,’ he said.

‘I’ll be putting anything in my body.’

Arrow said his determination is driven largely by his daughter and milestones he fears the disease could prevent him from witnessing. 

He said winning an NRL premiership had once been a major ambition, but his diagnosis had transformed his priorities. 

Arrow now wants to be present for his daughter’s first day at school, birthdays and eventual wedding. 

‘That is what’s most important to me in my life, in that fight,’ he said.

‘My daughter was so young. I have a beautiful young family who need me around. And I’ll fight. As absurd as this sounds, I’ll literally fight to the death.’

Arrow said he refused to ask why the disease struck him at the height of his physical career. 

‘One thing I’ve always thought now is I’ll never think to myself, “Why me?”’ he said.

‘Challenges in life can be hard, but I am always someone who has been there, whether it’s playing time or not.

‘And with this, I’ll figure it out. I have way too much to live for.’

Arrow also detailed how quickly his physical condition has changed. 

His speech has deteriorated, his left arm has become increasingly uncoordinated, and he can no longer spread his fingers or run. 

Arrow said the disease has also affected his emotions, leaving him prone to irritation and uncontrollable laughter during serious or emotional moments. 

His first symptoms emerged during pre-season when he struggled with chin-ups, noticed changes in his speech and developed weakness and twitching in his arm and shoulder.

He received his official diagnosis on May 14 after months of neurological testing.

Arrow initially felt relieved to finally have an explanation for his symptoms but broke down several minutes later when he thought about his daughter.

‘The only thing that got me was I did cry after about five minutes, only because I thought of my daughter,’ he said.

‘You can deal with it in yourself, but those other ones around you, that’s what makes it the hardest.’