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Advocacy group goes in to bat for MS sufferers

Shona Daube. PHOTO/SUPPLIED

ELISA VORSTER
[email protected]

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Advocacy group Multiple Sclerosis New Zealand [MSNZ] on Tuesday urged Pharmac to change its “unfair and outdated” rules to allow better access to funded drugs.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.”

2 COMMENTS

  1. I was diagnosed with Multiple Sclerosis (MS) in October 2011, at the age of 55. I woke up one morning with numbness in my lower back and legs, I couldn’t feel my feet touching the floor. I saw my doctor and had an MRI to see if I had a disc problem, it was negative and she told me she feared MS. I was sent to a neurologist, had two more MRIs, and was told that night that I have four lesions on my spine MS. I tried every shots available but nothing worked. In 2015, my neurologist and I decided to go with natural treatment and was introduced to Natural Herbal Gardens natural organic MS Herbal formula, i had a total decline of symptoms with this treatment, the numbness, terrible back pains, stiffness, body weakness, double vision, depression and others has subsided. Visit Natural Herbal Gardens official website naturalherbalgardens. com. This treatment is a breakthrough for all suffering from Multiple sclerosis, i am strong again!

  2. HSCT (stem cell treatment) as far more effective than disease modifying drugs in controlling MS. It’s a once only treatment for 80 percent of recipients (fact not fiction). NZ has it wrong. Treat Primary Progressive MS (the most aggressive), then Secondary Progressive MS (the downward side gets steeper) then Relapsing Remitting MS (you still have time under your belt). They are all the save disease. New Zealand will have a huge waitlist and many people will be tragically, seriously disabled by the disease. (You can publish my address of you wish).

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