Personal ‘Bangers to Bluff’ Crusade to Keep MS Patients Wheelchair-free

April 9, 2021 | Advocacy, Education, Event, Life with MS, Treatments

Media Release – For Immediate Release

8 April 2021

Personal ‘Bangers to Bluff’ Crusade to Keep MS Patients Wheelchair-free

For most, the annual Rotary Club of Half Moon Bay ‘Bangers to Bluff’ event is a chance to drive from Auckland to Bluff on roads less travelled to raise funds for charity. But for one man, taking part is a personal crusade to help his fellow multiple sclerosis (MS) patients remain on their own two feet for as long as possible.

Graham Walker was diagnosed with Primary Progressive Multiple Sclerosis (PPMS) 8 years ago. Despite the fact the former competitive cyclist now struggles to walk, he currently rides close to 200km per week.

“I do feel fortunate that I am currently able to manage my condition well” says Graham, President of the Taranaki MS Society and Committee Member of Multiple Sclerosis New Zealand (MSNZ). “Because of this I feel duty bound to help others with PPMS, and am taking part in this year’s Bangers to Bluff event, both on my bike and in our ‘old banger’ car, showing others with the disease that regular exercise is vital to staying healthy for as long as possible”.

However Graham has an equally important motive for taking part. He’s setting out early every day on his bike before helping drive donated vehicle ‘Keep Smyelin’ to help MSNZ in its long fight to see Pharmac extend funded access to 600 fellow PPMS patients to a disease-modifying treatment called Ocrevus (Ocrelizumab).

“There’s huge unmet need for over 600 New Zealanders like me with Progressive MS who have never been able to access any treatments” says Graham. “Ocrelizumab has been shown to delay progression of PPMS significantly, keeping patients up and walking for an extra seven years on average before they are reliant on a wheelchair. That’s a huge advance and one all Kiwi patients with Progressive MS deserve”.

MSNZ says while it’s pleased Pharmac now funds Ocrelizumab for certain patients with the more common Relapsing Remitting form of Multiple Sclerosis (RRMS), around 600 patients with Primary Progressive MS currently have no access to it. It says Pharmac’s already acknowledged that Ocrelizumab works for PPMS as it’s approved the treatment a low priority status for funding – however MSNZ says ‘low priority’ means it will likely take many more years before its finally funded, if ever.

“The simple fact is that many of New Zealand’s 600 patients with PPMS don’t have years to hang around and wait” says MSNZ President Neil Woodhams. “They need this drug now. Long-term clinical trials show that PPMS patients can expect to be reliant on a wheelchair within 12 years of diagnosis. However, results published recently in the European Journal of Neurology show ocrelizumab delays this by an average of 7 years, thereby deferring the need for a wheelchair until, on average, 19 years in total after diagnosis. Ocrelizumab also improves and maintains their cognitive abilities, reduces fatigue, halts further disability and maintains upper body ambulation. Being able to delay the condition is monumental as these patients can then continue to remain active, contributing to the economy, their families and their communities”.

Ocrelizumab is the ONLY disease-modifying treatment shown in clinical trials to halt disease progression in people with PPMS and has been approved for use by Medsafe, the FDA, NICE and the European Commission. Ocrelizumab is readily available to patients with PPMS in both the USA and UK. MSNZ says around 20 New Zealanders with PPMS have until now managed to get private access to Ocrelizumab through Roche’s Compassionate Programme. Graham is fortunate to be one of those lucky few and already seeing the benefits. Some of those patients report having zero or limited regression of their condition or any new lesions since starting treatment.

“Why should it be left to the lucky few who manage to get this precious private access?” says Graham Walker. “Patients like me with PPMS need funded access to ocrelizumab right now. It’s the only fair and humane decision”.

ENDS

Please consider supporting our ongoing advocacy work and Graham’s personal challenge: https://fundraise.msnz.org.nz/bangerstobluff

Bangers to Bluff

The “Bangers to Bluff” Rally is an annual charity event organised by the Rotary Club of Half Moon Bay (Inc). It is an opportunity for 20 vehicles valued at $2000 or less to travel from Auckland to Bluff over 12 days starting on Tuesday the 6th April and finishing on Saturday the 17th April, 2021. MSNZ is one of two Masthead charities selected for this year’s Bangers to Bluff event alongside Hopeworks NZ. All cars which make it to the finish line in Bluff will be auctioned off for charity.