Glen Innes MS survivor wants to be the first Australian to use new wonder drug

Jennifer Henry has been living with multiple sclerosis for 35 years, but will not be able to afford the first ever treatment for her disease.
Jennifer Henry has been living with multiple sclerosis for 35 years, but will not be able to afford the first ever treatment for her disease.

For five years Jennifer Henry has been slowly losing the ability to walk.

But after 35 years with multiple sclerosis, the Glen Innes local laughs she's gotten used to it.

One thing she can't understand: government's decision not list on the PBS scheme the first treatment proven to slow or even stop the slow regress of her degenerative disease.

"It was like a slap in the face," she said.

"And because my professor had sounded fairly optimistic about what was going to happen on December 20 last year, I thought what a fabulous Christmas present.

"It was a slap in the face".

Jennifer Henry.

Jennifer Henry.

Mayzent, approved safe for use in Australia last year, is the first drug ever to be usable to treat secondary progressive MS.

But at a cost of about $130,000 per person per year forever, the drug will remain out of reach for Jennifer without enormous charitable help.

She has asked Glen Innes for help - not just to stop her regression, but as a test case to show the government saving her health is cost effective.

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Some 25,000 Australians live with MS, a disease that attacks the central nervous system and interferes with messages between brain and body, most of them young. Some have primary progressive MS, which kills you.

Jennifer has secondary progressive MS. She'll live to 90, but someday she'll lose the ability to walk, to drive, to cook, to live her own life.

"It all just goes downhill.

"I am definitely losing mobility now," she said.

"It's a cow of a thing. It affects every MS survivor differently.

"I don't call myself a sufferer I call myself a survivor. I've found out now you should be called a thriver."

And she really felt she was thriving last November when Mayzent, also called Siponimod, was approved safe for therapeutic use.

It was then scheduled to go before Australia's Pharmaceutical Benefits Advisory Committee, which determines if Medicare will pay for the treatment.

Her spirits fell when the answer came back: no.

"I'm just wondering how the government thinks it's cost effective to have people like me with second progressive MS," she said.

"Considering this drug has been shown to stop or lessen the progression of disability how can the government think it's not cost effective to put it on the PBS when somebody like me will get more and more debilitated, need more and more government assistance.

"It just doesn't make sense."

What does she do now?

One option is to sell her house. That'd pay for 18 months of treatment.

But it'd also leave her homeless with MS; not an improvement.

She wants to be the first person to be able to take the drug and prove to the government it's effective, she said.

The advocate is aiming for an ambitious goal, but with a lot of financial help could she get there?

The Pharmaceutical Benefits Advisory Council acknowledged the "high clinical need for effective treatments" for secondary progressive MS. It also ruled the drug is effective.

"However, the PBAC considered that the appropriate place of Siponimod in the treatment algorithm for multiple sclerosis was uncertain, and the submission did not provide a reliable basis to assess the cost-effectiveness of siponimod. The PBAC also considered the financial estimates to be uncertain," according to minutes released last year.

A spokesperson for multiple sclerosis representative organisation MS Australia said the drug will be relisted on the PBS committee in March, with results to be known by April 24. He said they were cautiously optimistic about the relisting.

They're calling on supporters to make a submission to the process by February 12.