Paula Bennett with Charlotte Bond on the steps of Parliament in 2019. Photo / Supplied
I was 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 people with spinal muscular atrophy (SMA)
a degenerative disease affecting the control of voluntary muscle movement. It is 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, from a treatable and controllable disease.
Months earlier, I had been approached by parents of children with SMA and asked if I would help them fight for lifesaving drugs for their children. I met Charlotte Bond and was completely blown away. I haven’t seen Charlotte in years. Her mother made the big decision to move to Australia so that Charlotte could access the medicines she needed. She left her family and support system in New Zealand, got involved in a pandemic and couldn’t even visit her, but Charlotte’s family did what most of us would do if it was necessary and they did put his daughter’s needs first.
Charlotte thrived on Spinraza and can walk. She is back now, as a pharmaceutical company is subsidizing the medicines she needs. New Zealand does not yet fund medicines, but 65 other countries do, including Australia. Unfortunately Charlotte is not alone and there are other children and adults in New Zealand who are in dire need of access to life-changing medicines.
Too many friends and family have breast cancer. With early diagnosis and the right treatment, along with sheer courage and determination, they survive. Some have mortgaged their homes to access the medicines they need, others have used their savings, and one couple begged and borrowed. I suppose they are the lucky ones because they have had access to the medicines they need to increase their chances of survival. Too many don’t have these options, and because New Zealand doesn’t finance the medicines they need, and they can’t raise the money or move to another country, they die.
Yes, it is life and death. I have already said in my articles how lucky we are to be New Zealanders and to have access to our welfare and education systems. What a misfortune to be a New Zealander and not have access to the life-saving medicines they would have if they lived somewhere else. There are 105 modern medicines available through public funding for Australian patients which are not available for New Zealand patients.
It’s time to take a serious look at the Pharmac model. I remember in 2008 John Key made the election promise that if we were in government we would fund Herceptin. In principle, I agree that politicians shouldn’t choose which medicines we fund. But when you see the life-saving changes that drugs like Herceptin, Keytruda, and Spinraza bring to those people who could afford to buy them, then you have to dismiss a system that doesn’t see it.
The Select Health Committee called for a full review of Pharmac about three years ago, but it was blocked by the Labor government. I’m sure everyone has a good idea for the next government budget.
Right now there are more than 70 drugs Pharmac wants to fund – and would save lives – on their “Investment Options” list. Clearing this list would cost approximately $ 500 million.
Instead of scrambling and reforming the health care system in the midst of a pandemic, how about getting funding directly from really sick New Zealanders and making a substantial difference in their lives?