Fiona Tolich is one of the most sincere, staunch and unrelenting women I have ever met. She fights for children and adults with SMA – Spinal Muscular Atrophy – and has given her time, resources and heart to the cause. Her advocacy has meant that Spinraza is now funded for children in New Zealand, but not for adults, so she has moved to Australia. Our loss.
Rachel Smalley runs The Medicine Gap and tells people’s stories as she advocates for increased funding and transparency from Pharmac. She is so well-informed and gives her time and intellect without reward, believing passionately that New Zealand can do better. I saw Rachel last year at a funeral of a woman who lost her battle with cancer; before passing she had spoken so highly of Rachel’s work and asked me to get more involved.
These are the people that Minister Ayesha Verrall insinuated on Q+A last Sunday are being paid by pharmaceutical companies to campaign for funding for a medicine. She stated that pharmaceutical companies may influence those campaigns, and made it sound like these tireless advocates are “on the take”.
Those campaigning for a medicine to be funded have told me in the past that they have been accused of being funded by drug companies, I didn’t expect the Health Minister to trot the line out on National TV.
To the thousands of people who have signed petitions, to the sufferers who have to mortgage their homes and go on Givealittle to fund lifesaving medicines. To those who move to Australia, leaving their supports and jobs behind, because it is the only way their children (or they) will survive. To the amazing people who give their time, energy and dedication to fighting for us all, the Minister’s accusations are abhorrent and untrue. On behalf of the rest of NZ – thank you and may you find strength and love to keep going.
Paula Bennett is a former Deputy Prime Minister and National Party politician who now works at Bayleys Real Estate as national director-customer engagement.