For twins Lili and Manaia Graham it's the simple things in life, like breathing, exercise, dancing or singing that matter.
But the twins were born with cystic fibrosis. This year they started taking Trifakta, a medication that provides a better quality of life for those with cystic fibrosis.
"It changes your mental state as well obviously from being depressed because you're very sick and can't do anything," Lili says.
Her sister says taking it has allowed her to think about her future.
"You go from feeling so down because you don't see a point in life. No point in living, to wishing for a future and making plans for your future because you can have one now."
The girls' grandmother, Sue Tumataiki, said the benefits were noticeable very quickly.
43,000 signatures
"Way more sassy, a lot more energy, and it was immediate. The very next morning not coughing all the time."
However, Pharmac, the government agency that decides what medicines are funded, does not fund Trifakta.
A petition, with 43,000 signatures, was delivered to MP Shannan Halbert recently, urging the drug buyer to fund the drug.
Carmen Shanks, who organised the petition, told the health select committee today every day the drug is delayed, is a day of more irreversible lung damage.
"More days of missed school, more days of missed work, more days of medical treatment."
However, at $330,000 per person a year, the drug is unattainable for many. The Manaia sisters have been granted compassionate access to take Tfrifakta.
Emigrating possible
Pharmac chairperson Steve Maharey told the select committee funding the drug would almost account for the entire $191 million funding boost given in last month's Budget.
Shanks says she wants to see action as early as the end of this year.
"There is only so long you can live with declining health.
"Otherwise, I will have to consider my options for leaving New Zealand."
Lili and Manaia Graham say the drug has turned their life around.
But, for the campaigners seeking to get more people to access to the drug, the fear is more people will die if action isn't taken soon.