Shona Daube. PHOTO/SUPPLIED
Wairarapa people with Multiple Sclerosis [MS] are backing a plea for better and faster access to vital drugs needed to reduce the devastating effects of their illness.
Advocacy group Multiple Sclerosis New Zealand [MSNZ] on Tuesday urged Pharmac to change its “unfair and outdated” rules to allow better access to funded drugs.
They are seeking an immediate review of criteria for accessing drug treatments citing evidence from Australian neurologist and MS researcher Professor Helmut Butzkueven showing those with relapsing-remitting MS sometimes had to stop treatment, which then sped up the progression to life in a wheelchair.
Carterton author Shona Daube said she had to wait more than a year to fulfil the qualification requirements to be given access to the drugs she needed.
“When you get diagnosed with MS, you then have to have a second episode of it before you become eligible.
“You have to wait around until you have another relapse and the whole role of medication is to minimise the relapses.
“What’s really hard is you’re tossing up in your mind, ‘Do I want to get unwell so I meet the criteria, or do I want to be as well as I possibly can?’.
“It’s a very odd feeling to be in.”
Pharmac’s director of operations Lisa Williams said it was considering funding applications from MSNZ relating to widened access for multiple sclerosis treatments.
“The most recent meeting of our specialist neurological advisory committee, in July 2018, considered the information provided by MSNZ, which included Professor Butzkueven’s views.
“We will be seeking further advice from our primary clinical committee in November 2018, and all the advice will be considered as part of our assessment process for funding applications.”
Pharmac is the government agency which decides which drugs to publicly fund.
Masterton’s Nick Brandon, who also has MS, said he was angered by a process which saw those with the chronic illness forced to “jump through hoops” to get treatment.
“Anywhere else in the world, you get the latest treatment as soon as you’re diagnosed.
“[Here] you have to be really unstable and in danger of falling over before you get any help.
“If you have cancer or anything else you get treated as soon as possible – you don’t get left to get worse before you get treated.”
Carterton’s Nick Perkins is fortunate he no longer needs access to drugs after undergoing successful stem-cell treatment for his MS in Singapore last year.
However, he had been following the drug-access situation closely. He said it was more important than ever to bring stem-cell treatment to New Zealand.
“If and when they do, it will be the last line of defence,” he said.
“You will effectively have had to have failed on all the disease-modifying drugs before they’ll consider you for stem-cell therapy in New Zealand, so it becomes more important for the qualifying factors, so people can get on them quickly.
“People are going to be wanting to get on [the drugs] and trying them as quickly as possible, so if they don’t work they can potentially move on to stem cell therapy which should put them in remission.”