A new campaign, "All I want for Xmas is to live" was launched today by Patient Voice Aotearoa (PVA).
PVA are lobbying for the government to dramatically increase Pharmac's funding for medicine and medical devices. They say NZ's medicine funding is in crisis and urgent change is needed to help improve lives, prolong lives or save lives.
A meeting was held in Penrose today, with multiple patients who require medicine in order to live day to day, presenting their stories.
14 year old Stella Beswick, has lived with muscular atrophy most of her life. Day to day living is becoming increasingly difficult.
“The lungs are the life-limiting factor but currently she can use her arms a little bit but she will lose that ability and without the drug, she will lose all that movement. She will lose the ability to chew and swallow which will mean she needs a feeding tube inserted into her stomach,” Emma Beswick, Stella’s mother explains.
To get an idea of just how 'steep' these drugs cost - Stella's Father Hayden, went through the list of drugs that his daughter needs to avoid the symptoms of her condition and it came up to over a million dollars.
“My husband and I felt like driving off a cliff but we were told that your daughter is unlikely to make it out of childhood, will never walk, will never crawl, will just get weaker and weaker until she dies.
“But then when we found out there's a treatment becoming available, that could possibly help, that kept us alive, and kept us sane,” Emma Beswick continues.
With the current budget being $1 billion dollars, PVA chair Malcolm Mulholland (Ngāti Kahungunu, Rangitāne) says it needs to at least double.
That sounds like a lot of money, it should be a lot of money because this is the medicine for the entire country.
"If we want to be on the same level as Australia of England per capita, we have to double that. That's the rationale behind us wanting to increase the Pharmac budget."
The petition will be taken to parliament in March 2020.