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21 Nov

Kalydeco Petition Presented to Parliament

21 November 2019

Fight for ground-breaking cystic fibrosis treatment goes to parliament today.

It’s been hailed as a wonder drug with the potential to change dozens of lives. But Kalydeco, a breakthrough treatment for a strand of cystic fibrosis called G551D, sits languishing on PHARMAC’s funding list amongst 100+ other medications not available to New Zealanders.

Today at 12:30pm Cystic Fibrosis NZ presented the petition seeking funding for Kalydeco to Parliament, along with a range of other petitions seeking funding for treatments not currently available in NZ.

The petitions are part of Patient Voice Aotearoa's Signatures for Life campaign which seeks to increase funding for medicines in NZ.

Kalydeco is the first medication that fixes the underlying cystic fibrosis defect, essentially turning off cystic fibrosis. It represents a major breakthrough. Current life expectancy for those with cystic fibrosis is 37 years, but this drastically improves with Kalydeco.

In May this year PHARMAC recommended Kalydeco for funding with a low priority, which means it may linger for years on the funding waitlist.

"The evidence backing Kalydeco is unequivocal, in fact NZ is the only country in the OECD (with a significant cystic fibrosis population) that has not funded Kalydeco. The issue is that PHARMAC simply doesn't have enough funding for medicines. That's why we support the Signatures for Life campaign calling on the Government to increase funding," says Jane Bollard, Chief Executive of Cystic Fibrosis NZ.

"While NZ should be a place where people who need it can access life-saving medications, this is currently not the case. Funding for medications in NZ is too low, meaning many people miss out," says Jane.

NZ is well behind when it comes to providing medicines and treatments for those who need it:

  • NZ has the worst access to medicines in the OECD.
  • Over 100+ medicines are on the waiting list.
  • Over 250,000+ Kiwis are waiting for medicines.
  • Every $1 spent on modern medicines saves the health system between $3$10 in hospitalisations depending on the condition.
  • Some high priority medicines have been waiting for almost 6 years to be funded, and others not deemed high priority have been waiting for almost 14 years.
  • Many New Zealanders are not receiving modern medicines.

"The fact there are so many different petitions across a range of conditions, some rare and others widespread, shows that this issue affects a huge number of people. If you're not directly affected you will know someone who is," says Jane.

Eddie Porter’s two-year-old son Otis has cystic fibrosis and would benefit from Kalydeco. Currently, Otis has a life expectancy of 37 years and maintaining a quality of life is a constant battle.  If Otis could access the drug Kalydeco, he would live a relatively normal and lengthy life. 

“My heart breaks when I know that there is a drug funded in other countries that will give my son a normal life,” says Eddie.

“If we stay in New Zealand, Otis’ condition will deteriorate to the point where he will die young. As the drug is funded in Australia, we face the very real prospect of becoming medical refugees, a decision many New Zealanders we know have made in order to give their children the best shot at life. Why won’t our Government do something to help our son?” he says.

The Signatures for Life campaign includes a petition calling for an increase in funding for medicines in NZ, more information can be found here: 

PHARMAC Petition