Australians who turn to botox to ease extreme muscle tension in their limbs, including victims of stroke, claim they have inadequate access to the government funding they require.

They say they are treated differently by the federal government when it comes to free, ongoing access to botox and they’re calling for change.

Disability advocates say this inequity exposes vulnerable people to financial distress at a time when they really need support.   

In this video, you’ll meet some of the people who’ve experienced botox treatment and the medical specialists who want a rethink of the rules.

So what does botox do?

Botulinum toxin commonly referred to as ‘botox’ is well known across Australia for its cosmetic effects to enhance facial features and other areas of the body.

But there are many other reasons for using botox and one of them is to relieve extremely tight muscles.

This condition of having no control over these extremely tight muscles is called muscle spasticity. It’s something that affects many victims of stroke and cerebral palsy.

Stroke Foundation clinical council member professor Susan Hillier says the reason behind muscle spasticity is unknown.

“Spastic muscles have excess excitability and the muscle is overactive all the time.” she says.

“People who have spastic muscles their muscle really isn’t responding to their voluntary commands anymore.”

Queensland medical practitioner Dr Warren Jennings-Bell says there is a whole list of problems that can occur from muscle spasticity.

“You can develop pressure areas where you get ulcers in your skin.”

“It makes hygiene difficult for some people,” he says.

Muscle spasticity affects 30 per cent of people who have had a stroke and up to 80 per cent of people with cerebral palsy.

Botox: mixed success

Leeming resident Rona Lee a mother of two and grandmother to three children had a stroke that debilitated her whole left side prohibiting her from using her left hand.

She suffers from severe muscle spasticity and often gets muscle spasms that are painful.

“I’m deep into family history and in my garden and that’s what keeps me alive.” she says.

Botox injections can allow individuals to walk or have full movement of their arm that they may not have had prior to the injections.  

Being prescribed Botox is crucial for thousands of Australians every year to allow them to move or walk.

Susan Hillier says one of her clients could not use her entire right side of her body but after the Botox she could move it.

“For it to make such a difference that now she can get her hand open, she can wash her fingers, she can walk without her stick and keep up with her children.”

-Susan Hillier

 “Yes, it’s expensive, but that’s a big effect,” she says.

Botox: not everyone is equal

People with muscle spasticity that cannot be relieved without the use of botox rely on these prescriptions.

Those who have cerebral palsy are able to access botox for free under the Pharmaceutical Benefits Scheme.  

But access to botox for survivors of stroke is restricted and, after the first year of treatment, they are required to pay every year after that, for half the year.

It is important for those treating spastic muscles with botox to get regular treatments as the medication runs out.

“We develop antibodies to it. One injection lasts maybe three months, and then the toxin is overcome by the body,” says Hillier.

Dr Jennings-Bell says the treatment schedule varies depending on the severity of the symptoms and in some cases it is advisable to receive the botox treatment every three to four months.

“Most people who have it will require it on an ongoing basis unless it’s causing problems or they don’t want to go through the process of the procedure.”

Dr Jennings-Bell says there is strong evidence that shows those receiving botox and engage in a therapy program get the best results from their botox medication.

But the botox treatment itself is not an easy process.

“I’m really really frightened of the injections because they’re very long thin needles,” says Rona Lee.

Cerebral palsy patient Sunyal Maroo says: “It’s not ideal because the injection still really hurts.”

Susan Hillier says the cosmetic industry has given botox a bad name associating it with fake, plastic and vanity.

“It’s not related to anything to do with the face. My clients, they’re not doing it for fun. They’re doing it because they’re desperate.” she says.

Maroo, says he used botox twice a year for seven or eight years as a child.

“The botox did definitely help with that,” he says.

“Pretty much everyone with CP should get botox but not everyone can which is not fair, ”  

Currently in Perth there is a limited number of muscle spasticity specialists who provide botox.

Maroo says the process to get botox treatment in WA is a long one.

“It wasn’t always that I needed, it was more -when was it available? Unfortunately, there is not enough botox clinics for people with CP,” he says.

“It was still in its infancy. I have no idea what it’s like now, but when I was a kid it wasn’t easy to access. Pretty much everyone there should get brought up, but not everyone can, which is unfortunate, not fair,”