Big price to control epilepsy

The West Australian - - NEWS - Cathy O'Leary Med­i­cal Ed­i­tor

By day, Amanda Merendino works in a phar­macy.

By night, she takes on a sec­ond job in a pub to pay for the med­i­cal cannabis that has turned her life around.

The 29-year-old, who has had epilepsy since she was 12, pays al­most $600 for a month’s sup­ply of Til­ray med­i­cal cannabis — a cost she is strug­gling to af­ford.

Ms Merendino said the medicine had trans­formed her from a skele­tal “zom­bie” on strong med­i­ca­tion to control eight or nine seizures a day. Her weight had plum­meted to 42kg, with many peo­ple as­sum­ing she had an eat­ing dis­or­der.

Fig­ures show that by last month, the Ther­a­peu­tic Goods Ad­min­is­tra­tion had ap­proved 2339 spe­cial ac­cess scheme ap­pli­ca­tions for un­ap­proved med­i­cal cannabis prod­ucts, in­clud­ing 568 ap­provals last month alone.

There are 52 doc­tors across the coun­try who have au­thor­ity to pre­scribe med­i­cal cannabis but no prod­ucts are sub­sidised un­der the Phar­ma­ceu­ti­cal Ben­e­fits Scheme.

Ms Merendino said that her seizures came on with no warn­ing other than her arm flick­ing up.

“Be­fore I knew it I’d be on the floor and then two hours later I’d wake up and my mum would have me on the bed and I’d be so tired,” she said. “I had med­i­ca­tion to control the fits but the side ef­fects were so bad that I had no en­ergy and would have to have a sleep as soon as I got home from work.”

While she still took med­i­ca­tion to control “blank­outs” — where some­one loses aware­ness for a short time — med­i­cal cannabis re­placed the drugs that had con­trolled her fits.

“I’m so much health­ier now, you can see it in my face and body,” Ms Merendino said. “But I’m pay­ing $450 for a 25-day sup­ply of med­i­cal cannabis.

“The only way I’ve been able to af­ford it is be­cause I live at home and some­times work at night as well — and even then I strug­gle.”

Til­ray, one of the big­gest global pro­duc­ers of med­i­cal cannabis, is lob­by­ing gov­ern­ments to con­trib­ute to the cost in the same way they do for other drugs.

Vice-pres­i­dent of global pa­tient re­search and ac­cess Philippe Lu­cas said the com­pany be­lieved there should be rea­son­able pa­tient ac­cess to med­i­cal cannabis.

“Un­for­tu­nately, re­search has shown that cost is a very real ob­sta­cle to ac­cess in many ju­ris­dic­tions, so we work with gov­ern­ment reg­u­la­tors and in­sur­ers to in­crease cost-cov­er­age for pa­tients wher­ever we can,” he said.

“We be­lieve that Til­ray med­i­cal cannabis has met the stan­dard of safety and ef­fi­cacy to be recog­nised as a medicine and there­fore should not be taxed any dif­fer­ently than other pre­scrip­tion drugs.” Pic­ture : Ian Munro

‘I’m so much health­ier now . . . but I’m pay­ing $450 for a 25-day sup­ply of med­i­cal cannabis.’

Amanda Merendino cred­its med­i­cal cannabis with con­trol­ling her epilepsy with­out the se­vere side ef­fects.

As a skele­tal ‘zom­bie’.

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