More needs to be done to increase access to medication, health advocates have warned.
Over the weekend, the Government pledged a $60m boost to Pharmac to fund new medications.
However, Medicines New Zealand said the country was at the bottom of 20 comparative OECD countries for its access to modern medicines.
Chief executive Dr Graeme Jarvis said while the announcement was a positive step, the medicines waiting list contained 18 cancer medicines, as well as 86 medicines to treat other illnesses like heart disease, diabetes and arthritis.
“This means patients with those diseases and others, including mental health and rare disorders, will still likely face inequitable access to medicines.”
New Zealand Pompe Network president Allyson Lock was diagnosed with the incurable degenerative disorder in 2010.
If left untreated Pompe can lead to progressive muscle weakening, problems with breathing and swallowing, and death.
A medication, Myozyme, is funded for infants — however there are no infant patients in the country. Older patients instead relied on manufacturer Sanofi Genzyme to provide the medication on compassionate grounds.
“It’s meant to be for people in third-world countries, poor countries with corrupt governments. Not places like here,” Lock said.
Australia, along with more than 75 other countries, fund the medication.
She said it was exhausting having to fight for treatment.
“It would be nice just to live and have to worry about what’s for dinner that night, not writing letters and begging for vital medicine.”
Lock urged the Government to provide more funding to ensure equitable access to medication.
“They gave me a Queen’s Birthday honour this year for services to people with rare health disorders, but they won’t give me my medication.”
Arthritis New Zealand said it wanted increased funding so that the medicines waiting list could be cleared.
Chief executive Philip Kearney said the medicines for arthritis on the waiting list were mostly what is called biologic medicines.
“They help with the types of arthritis in which the immune system goes astray and attacks a healthy joint, such as rheumatoid arthritis.”
Arthritis needed to be raised as a priority within health planning, he said.
“Better access to medicines is only one part of the change that is needed. For example, if there were more publicly funded rheumatology specialists, medicines could be prescribed earlier. In the case of gout arthritis, a medicine currently funded, is not reaching all the people that need it.”
The Lung Foundation said the funding boost was a “drop in the ocean” and there needed to be more investment in modern medicines.
Chief executive Philip Hope said lung cancer killed five people in New Zealand each day.
“We believe 80 percent of lung cancer patients do not have an effective first line treatment. The impact on patients to meet the cost of unfunded drugs can cause financial crisis and increased risk of suicide.”
Vonja Young’s husband was diagnosed with stage four lung cancer in 2017. He had never smoked.
While he currently relied on funded medication, the drug will eventually stop working.
The preferred medication for his cancer is Osimertnib, which is funded in Australia.
It would cost the family almost $12,000 a month to access the drug, Young said.
“Every day it is a juggle between living life and ticking off some bucket lists versus saving every dollar and cent because it means life.”
She said they were fortunate to have a home and good jobs, although it would still be a struggle to self-fund.
“I really worry and feel for families that don’t have the financial resources that we have and live hand to mouth or close to it. There really are people dying prematurely.”
Pharmac said the extra funding allowed it to make “real inroads” into funding medicines on the priority list, with eight new medication proposed.
Board chairman Steve Maharey said Pharmac’s role was to make more medicines available to help New Zealanders live healthy lives.
“We are working our way down our medicine priority list. These new medicines are just the beginning – more is on the way.”