A pedal-powered petition to double the budget of the government’s drug-buying agency Pharmac is apersonal journey for an Alexandra woman.
‘ If I get an extra 10 years out of it
I will be very,
very happy ,
Claire Scofield will spend some time cycling alongside Dunedin couple Julian and Camilla Cox who are on a tandem bike journey to Wellington with a skeleton and coffin in tow.
They are expecting to travel today from Wanaka to Cromwell, on the way to Tarras, asking people to sign the petition.
Ms Scofield was diagnosed with cystic fibrosis (CF), a condition that caused damage to the lungs and digestive system, when she was 8.
Now, at 31, she had only about 35% of her lung function and without a lung transplant she was looking at ‘‘a very limited time left’’.
‘‘I won’t be here in five years without a lung transplant,’’ Ms Scofield said.
‘‘I’ve lost quite a lot of my functioning recently, in terms of exercise capacity, ability to work.’’
From being a very active, social and career-driven person, ‘‘now I spend my nights on oxygen’’.
Oxygen was needed if she did any exercise and she was having four to five hospital admissions a year, ‘‘and that’s two-week courses on antibiotics’’.
She is supporting the petition as one of the 250,000 people in New Zealand who need medication that Pharmac did not currently fund, she said.
She ishoping a new type of medication called gene modulators would be funded by Pharmac. In particular, a medicine called Trikafta was approved by the United States Food and Drug Administration in October last year.
The drug worked to correct gene mutations and was effective for 90% of people with CF, she said.
Trikafta had been shown to have on average a 14% increase in lung function capacity.
None of the gene modulator medicines were funded by Pharmac but they were funded in almost every other developed country in the world, Ms Scofield said.
If she was on the modulators, she could have 15 more years instead of facing only five more years without a lung transplant.
Increasing funding for these medications was not about her, she said.
‘‘For me, I’m understanding that yes, I’m well progressed along the disease and if I get an extra 10 years out of it I will be very, very happy.’’
But if gene modulators were available to people who had 90% lung functions, ‘‘and they can get on it when they are 10, they can live long, long lives’’.
Doubling the funding of Pharmac ‘‘catches us up with the lowest other country’’.
New Zealand was ‘‘so far behind’’ other developed countries when it came to drug funding, she said.
There was ‘‘so much research’’ that showed preventive medication saved countries money in the long term.
Pharmac senior communications adviser Jane Wright said the 2019-20 combined pharmaceutical budget was $995 million.
In September last year it was given an additional $60 million increase over two years, taking Pharmac’s budget for medicines to over $1 billion.
Mr Cox said the trip aimed to raise awareness for the Patient Voice Aotearoa petition calling on the Government to double Pharmac’s budget immediately and triple it within two years.
‘‘The tandem represents the doubling of the budget and the coffin represents the people who are dying without access to modern medicines,’’ he said.
‘‘We feel this is important because New Zealand is far behind other OECD countries in funding for medicines.’’
Their daughter Rachael (19) has cystic fibrosis.
It was important people with cystic fibrosis had access to drugs that could help before the disease caused irreversible damage in their bodies, he said.
‘‘The desperation you feel when you know there is something there now that would make all the difference in the world and you just can’t access it is heartbreaking.’’
The couple hope to arrive at Parliament buildings, in Wellington, on January 22, where they will leave the coffin.