14 Aug 2018

Pharmac funding of MS drugs "restrictive & cruel"

From Nine To Noon, 9:09 am on 14 August 2018

An Australian neurologist says the way Pharmac's criteria for continuing access to drugs for Multiple Sclerosis (MS) are too old, and not based on evidence. 


Photo: Tysabri

His comments were made in response to Auckland man Brendan Rochford's funding for MS treatment being cut off this year, because he could not walk 500m. 

Mr Rochford is required to walk the distance each year to continue getting funding for Tysabri. 

Mr Rochford told Nine to Noon the thought of the test took over his life for most of the year. 

"Basically I get two or three months after I've done one walk where I can relax and not worry about it too much from then. The rest of the year my mind is running round in circles: 'Can I do the walk this time next year?'

"If I can't do it, I lose my medications, if I lose my medication the chances of me to being able to continue working diminish massively." 

Mr Rochford had been able to continue getting the drug, as the company that makes it has continued to supply it to him on a compassionate basis. 

While Pharmac should be congratulated for making effective treatments for MS available, neurologist Helmut Butzkueven said the criteria to get them was incredibly cruel, and ultimately saw Pharmac withdrawing a medication that helped keep Mr Rochford in work and engaged in society. 

Multiple Sclerosis New Zealand (MSNZ) was asking Pharmac to review the way it provided access to MS drugs. 

Prof Butzkueven met with Pharmac in July, to offer scientific support to MSNZ which wanted Pharmac to change the criteria around getting the treatment.  

He said people with MS who could walk 400m, should still be eligible. 

"So you can drive your car, you can access everything, you can work, you can pay taxes, you're not relying on anybody in New Zealand as it stands you will never be able to access disease-modifying drugs if you're in that situation, and therefore, you're just going to get worse, very quickly." 

Mr Rochford said since taking Tysabri he had not had any new MS-related symptoms occur. 

Pharmac was currently considering funding applications from MSNZ related to widening access for MS treatments, director of operations Lisa Williams said. 

"The most recent meeting of our specialist neurological advisory committee, in July 2018, considered the information provided by MSNZ," she said.  

"We will be seeking further advice from our primary clinical committee, the Pharmacology and Therapeutics Advisory Committee (PTAC), in November 2018 and all the advice will be considered as part of our assessment process for funding applications."