Four-year-old Charlie Smith's parents have hit the same bureaucratic brick walls as those encountered in the case of another Albury child Chloe Zahrooni nearly 12 months ago.

They are paying a seemingly unnecessary price in being unable to access a cannabis-based drug which would be available if they lived in Wodonga and not Albury.

The ultimate responsibility for the glitch sits with the Victorian government, which has the final say in AWH matters even though its operations are jointly funded by NSW.

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Charlie, the youngest of three children to Thurgoona couple Brad and Kate, was born with a life-limiting neurological condition called lissencephaly or "smooth brain".

"His life expectancy isn't great, he probably won't walk, probably won't talk and we've basically been told to just celebrate whatever he can do," Kate said.

"It's a balancing act of trying to get him on the right medications to keep his seizures to a minimum."

A potential breakthrough emerged in June this year when Charlie's neurologist from the highly acclaimed Royal Children's Hospital in Melbourne, Richard Leventer, identified cannabidiol as a treatment based on previous Victorian-based cases he has handled.

It could be accessed through a compassionate access scheme, but the fact Charlie's home address is NSW means he is ineligible.

"If we lived in Wodonga he would be on it, but the fact we live in Albury he can't," Kate said.

"We aren't triaged to Sydney, we are triaged to Melbourne.

"We've asked whether we can have Charlie listed with an address in Victoria, but it's not that simple."

A similar compassionate access scheme exists in NSW, but Charlie's parents would need to transfer his care to a Sydney-based neurologist and join a waiting list of more than a year.

Brad said cannabidiol might not be the silver bullet, but the family just wanted the opportunity to at least try it.

"When a neurologist says it might be very beneficial, you immediately get some hope," he said.

Victorian Health Minister Jenny Mikakos has given an undertaking to raise the case with her NSW counterpart to "determine what can be done to support Charlie".

"Our thoughts are with Charlie and his family," a spokesperson for the minister said.

"We urge the Commonwealth to consider the inclusion of medicinal cannabis on the PBS as a matter of priority, to enable access for all Australian patients who need it."

Federal Health Minister Greg Hunt is aware of Charlie's predicament and wrote to Ms Mikakos in late July seeking her intervention.

Farrer MP and former federal health minister Sussan Ley went in harder on the family's desperate plight.

"The Victorian government's response falls well short of decency, and showed little evidence they want to address what is clearly a dreadful cross-border glitch," she said.

"Here we have a young patient who desperately needs help and cannot receive care that is within arm's reach.

"I would challenge Ms Mikakos to give Charlie's parents a call, hear their story, then see if she has the same response.

"Ten months ago I raised a similar case with Victoria and they just blamed the Commonwealth.

"We fund the states to treat patients not to bury their heads in the sand.

"The minister's office is well aware of the rules surrounding the approval process of new drugs onto the PBS.

"There is actually nothing even before the Pharmaceutical Benefits Advisory Committee to approve which could help Charlie right now."