Hundreds of Patients Unfairly Missing Out
Hundreds of Patients Unfairly Missing Out Due to ‘Heart-Breaking’ Drug Access Rules
Pharmac is being urged to change its “unfair and outdated” rules to allow better access to funded drugs for Multiple Sclerosis or MS, a chronic illness affecting over 4000 New Zealanders.
Multiple Sclerosis New Zealand (MSNZ) says MS patients in this country are subject to some of the most restrictive drug access criteria in the western world, with hundreds suffering unnecessary disability, cognitive impairment and mental health issues due to having their drug treatment either stopped too soon or not started early enough.
“Hundreds of MS patients are currently either not being started on or being prematurely stopped from accessing drug treatments that would help them retain enough function to work and contribute to society. The current Pharmac criteria are unfair, not evidence-based and overly restrictive” says MSNZ Vice-President Neil Woodhams.
MSNZ recently made a submission to Pharmac seeking an immediate review of its Special Authority Criteria for access to MS drugs based on the latest international evidence. That evidence was presented, in person, by world-leading Australian Neurologist and MS Researcher Professor Helmut Butzkueven.
Professor Butzkueven says Pharmac is to be congratulated for being one of the few countries in the world to give MS patients funded access to the highly-effective disease-modifying treatments fingolimod and natalizumab. However, he believes its current criteria for stopping these drugs is not based on evidence but on budgetary considerations. “While the stopping criteria were reasonable many years ago, strong evidence now shows that the very MS patients who would benefit the most from staying on highly-effective MS treatments are being forced to stop them” he says. “The results of long-term outcome studies clearly show these drugs are of greatest benefit in the sickest patients, where they significantly delay ongoing progression of disability and consequent loss of employment and quality of life”.
Professor Bitzkueven says currently, if a patient with the most common form of the disease, relapsing-remitting MS, experiences just one significant relapse that changes their function, they are forced to stop taking the drug, which speeds up progression to life in a wheelchair.
“I met several people with MS in just this situation during my recent visit to Auckland and Christchurch for patient seminars and listening to their stories of fear and dread before the next “scoring” visit with their neurologist just breaks your heart” he says. “The study results and patient experiences tell exactly the same story – those forced to stop under the current Pharmac rules get worse very quickly afterwards”.
MS Patients in New Zealand currently have their disability progress graded on an Expanded Disability Status Scale, or EDSS, of 0-10; the higher the score, the greater the disability. Currently, all patients have their drug access stopped automatically if their EDSS score increases by 2 points on the scale or exceeds 4.5 and does not improve within 6 months.
Conversely, they cannot start funded disease-modifying drugs until they experience a recorded second episode of new symptoms, or relapse, within 12 months. They also require proven MRI scan evidence of new inflammatory activity and score less than 4 on the EDSS scale (having significant disability but being able to walk without aid or rest for 500m).
MSNZ would like to see the criteria changed to allow patients to begin and remain on disease-modifying treatments following diagnosis up to EDSS level 6 or 6.5 (walking between 100m and 20m with one or two aids). It would also like to see new MRI activity recognised as diagnostic criteria for starting treatment as an alternative to the sole need for a second episode of symptoms or relapse. These changes will enable patients to access treatments earlier than is currently possible and stay on them for longer.
MSNZ is hopeful its latest submission will be enough to convince Pharmac to change the current criteria and give patients more hope and certainty.
“For a patient to have their drugs stopped suddenly is a shattering experience” says Neil Woodhams. “They feel abandoned and are forced to acknowledge that Pharmac believes there’s nothing more that can be done for them. The evidence does not support this belief and it can’t be allowed to continue”.