Former rugby league player Jai Arrow has disclosed his participation in an extensive treatment plan to combat Motor Neurone Disease (MND), which includes taking HIV medication. The 30-year-old revealed his regimen on the "Chats from a Chair" podcast, emphasizing his determination to witness his young daughter's milestones as his primary motivation.
Arrow is undergoing treatment that includes prescribed medication, a high-protein, anti-inflammatory diet, and stress management techniques. He is also utilizing hyperbaric chambers and red light therapy as part of a holistic approach, though these are not established treatments for slowing MND progression. His medical team has directed him to take antiretroviral drugs, which are typically used to treat HIV, based on research into how ancient retroviruses embedded in human DNA might contribute to motor neurone damage.
Antiretroviral drugs have been investigated as a potential treatment for MND. An early Australian study suggested that the HIV drug Triumeq was well-tolerated and showed promising indicators for functional decline and breathing capacity, though larger trials are necessary to confirm its efficacy in delaying disease progression. Arrow did not specify which antiretroviral medication he is taking.
In addition to the HIV medication, Arrow is taking riluzole and edaravone, both of which are approved medications known to slow the progression of certain forms of MND. Riluzole may offer an average survival benefit of six to 19 months, while edaravone can help some individuals maintain physical function for longer periods, according to MND Australia.
Arrow shared that he was initially denied a place in a clinical trial due to concerns about his liver function, but this issue has since been managed, and he hopes to participate in experimental research soon. "Very soon I’ll be, I guess, a lab rat," he stated. "I’ll be putting anything in my body."
His motivation to fight the disease is deeply personal, centering on his young daughter. Milestones such as her first day at school, birthdays, and eventual wedding are what he fears the disease could prevent him from witnessing. "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 has chosen not to dwell on the unfairness of his diagnosis, stating, "I’ll never think to myself, ‘Why me?’ Challenges in life can be hard, but I am always someone who has been there... And with this, I’ll figure it out. I have way too much to live for."
Arrow described a rapid decline in his physical condition since his symptoms first emerged during pre-season training. He has experienced speech deterioration, increasing uncoordination in his left arm, and has lost the ability to spread his fingers or run. The disease has also affected his emotional state, leading to irritability and involuntary laughter. He received his official MND diagnosis on May 14, following several months of neurological testing. The diagnosis brought initial relief, which was quickly followed by emotional distress when he considered the impact on his daughter and family.