Gruelling bike crusade heads to Parliament
An arduous 1300 kilometre biking campaign undertaken by a determined Dunedin couple is set to finish at Parliament steps on Wednesday – delivering an impassioned message to the government to immediately double Pharmac’s budget.
Julian and Camilla Cox set off from Dunedin on January 3rd towing a coffin behind them -and a skeleton called Hope – in honour of the more than 250,000 sick and suffering New Zealanders desperately fighting for access to modern treatments the government’s drug-buying agency currently cannot fund. They are due to ride into Wellington and arrive at Parliament steps this Wednesday January 22nd. The coffin will leave the cenotaph at 1.30pm and, led by a karanga, will be walked to Parliament steps by Julian and Camilla Cox, Malcolm Mulholland and fellow members of Patient Voice Aotearoa, along with patients/whanau who are supporting the cause.
“The coffin represents Kiwis who are dying because they don’t have access to life-saving medicines readily available overseas” says Julian Cox. “Shamefully, New Zealand ranks last out of 20 OECD countries for access to modern drugs. Even with a recent government funding top-up, New Zealand still spends only 5% of its health budget on medicines compared to the OECD average of 16%. This is inhumane and has to change”.
The couple have been overwhelmed by the positive response they’ve received on their bike journey through the South Island these past few weeks. While battling head winds and colder than normal temperatures they say they’ve been buoyed by the warmth and support of their fellow Kiwis along the way.
“The reception we’ve had in every town and city has been incredibly positive” says Julian Cox. “We’ve been humbled by people’s kindness and generosity, with offers of free camping and beds for the night, free coffee and meals, with dozens more sharing personal stories about their own health struggles in having to go without medications, many of which are freely available in Australia and other countries. Some spoke of their desperation in having to establish or contribute to crowd-funding campaigns as a last resort to help friends and loved ones get access to drugs to extend their lives or reduce pain and suffering”.
The couple have been collecting signatures on their journey for a petition organised by Patient Voice Aotearoa (PVA), urging the government to conduct an external reform of Pharmac. PVA, backed by 30 major New Zealand health charities, is chaired by Palmerston North’s Malcolm Mulholland, whose wife Wiki is battling advanced breast cancer. The group is calling for Pharmac’s current $1 billion dollar budget to be doubled immediately and tripled within two years. The petition, linked from https://rip.kiwi is aiming to gather 250,000 signatures.
“One woman who signed came up to me and told me that our fight represents a ‘ little ray of hope for those of us who are struggling’ which is so gratifying and humbling to hear” says Julian. “It really gives us the impetus to keep pedalling and get to parliament on Wednesday to deliver this message on behalf of all New Zealanders”.
Julian and Camilla Cox have had their own personal motive for undertaking this campaign. Their 19 year old daughter Rachael has the lung disease cystic fibrosis (CF). While her disease is relatively well-controlled right now, Rachael still suffers from CF-related diabetes and pancreatic insufficiency. Julian says she needs access to modern CF drugs in order to prevent her lung capacity from deteriorating further and putting her life at genuine risk, but none are currently funded here.
“We would buy these drugs tomorrow if we could afford them” says Julian. “It’s heart-breaking and soul-destroying seeing your daughter suffer, knowing she could rapidly deteriorate at any time. It’s also frustrating as a parent that there are new drugs out there which could halt that deterioration which we can’t access, despite these medicines being funded in Australia and the UK.”
“Pharmac has agreed to put one modern CF treatment, Kalydeco, on its wait list for funding but only as a ‘’low priority’ which means it is unlikely to ever get final approval. Some Kiwi CF patients are now considering moving to Australia to access it”.
The Cox’s left Dunedin on January 3rd, first travelling south to Balclutha, Gore and Invercargill, then north to Queenstown, Cromwell, Omarama, Kurow, Oamaru, Timaru, Ashburton, Christchurch and Kaikoura. They arrive in Picton and will then take the ferry to Wellington on Wednesday morning.