I stood on the steps of Parliament three years ago and accepted a petition signed by more than 15,000 people asking Pharmac to fund a life-saving medicine for sufferers of spinal muscular atrophy (SMA) a degenerative disease that affects the control of voluntary muscle movement. It’s caused by a loss of motor neurons. In the most severe type, tragically also the most common, the average age of death in New Zealand is 13 months old, from a treatable and screenable disease.
Months before I had been approached by parents of children with SMA and was asked if I would help them fight for life-saving medicines for their children. I met Charlotte Bond and was completely smitten. I haven’t seen Charlotte for years. Her mum made the big decision to move to Australia so that Charlotte could access the medicines she needed. She left behind her family and support system in New Zealand, was caught in a pandemic and couldn’t even visit, but Charlotte’s family did what most of us would do if we had to and put their daughter’s needs first.
Charlotte flourished on Spinraza and can walk. She’s back now, as a drug company is subsidising the medicines she needs. New Zealand still doesn’t fund the medicines – but 65 other countries, including Australia, do. Unfortunately Charlotte is not alone and there are other children and adults in New Zealand that desperately need access to life-changing medicines.
Far too many friends and family of mine have breast cancer. With early detection and the right treatment, along with sheer guts and determination, they live. Some have mortgaged their homes to access the medicines they need, some have used their savings and a couple have begged and borrowed. I suppose they are the lucky ones as they have accessed the medicines they need to increase their chances of surviving. Too many don’t have those options and because New Zealand doesn’t fund the medicines they need, and they can’t raise the money or move to another country, they die.
Yep, it is life and death. I have said in my columns before how lucky we are to be New Zealanders and have access to our welfare and education system. How unlucky to be a New Zealander and not get access to life-saving medicines they would get if they lived somewhere else. There are 105 modern medicines available through public funding for Australian patients that are not available to New Zealand patients.
It is time we looked seriously at the Pharmac model. I remember in 2008 when John Key made the election promise that if we were in government then we would fund Herceptin. In principle I agree that politicians should not be choosing what medicines we fund. But when you see the life-saving changes that medicines like Herceptin, Keytruda and Spinraza make for those people who could afford to purchase them, then you have to push back at a system that doesn’t see that.
The health select committee called for a full review of Pharmac about three years ago but was blocked by the Labour Government. I am sure everyone has a good idea for the upcoming Government Budget.
Right now there are more than 70 medicines that Pharmac want to fund – and that would save lives – on their “Options for Investment” list. It would cost approximately $500 million to clear this list.
Rather than reshuffling and reforming the health system in the middle of a pandemic, how about we get funding directly to really sick New Zealanders and make a substantial difference in their lives?
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