This story was originally published on RNZ
Politicians heard emotional pleas today from cancer survivors, people with disabilities and health agencies to boost Pharmac’s funding for life saving drugs.
Petitions were presented to the Health Select Committee at Parliament – calling on medicines to be funded – including for breast, lung, ovarian cancers, along with multiple myeloma.
Emily Beswick and her daughter, Stella, travelled 500 kilometres from Cambridge to today’s select committee.
Stella has spinal muscular atrophy and uses a wheelchair.
She sat quietly at the back of the select committee room – listening – smiling from time to time.
While medication to help her condition is available overseas – here in New Zealand – it’s not.
And for Ms Beswick that’s devastating.
“We feel that all hope is gone – we have been waiting 13 years for a treatment to arrive and now that it’s finally here – it is out of reach,” she said.
Spinal muscular atrophy is a childhood version of motor neurone disease but the drugs to halt it are not funded here.
MS Beswick said her daughter’s quality of life could be improved.
Neil Graham has been in remission from chronic lymphocytic leukemia for five years.
He broke down as he told the select committee he was given compassionate access to a drug that probably saved his life.
“Since then, I’ve been working, making a useful contribution to society, paying taxes and having a full and enjoyable existence,” he said.
Mr Graham said the Pharmac model needed to change.
“Current Pharmac processing of applications for approval for cancer medications take almost two years – and if you’re dying of cancer – that’s just not acceptable,” he said.
Joy Wilkie is in remission from the blood cancer myeloma.
No new anti-myeloma medicines have been funded here in the last five years.
“When I relapse – and I know I will – our world class clinicians know what best international treatment I need to give me more years of meaningful life,” she said.
Pharmac wasn’t available for an interview and it did not did not appear at the select committee today.
In statement, it said funding decisions take time and it is aware that not everyone has time on their side.
But late this afternoon, it announced on its website a proposal to fund Kadcyla for some breast cancer patients, Alectinib for lung cancer and Ocrelizumab for multiple sclerosis from 1 December.
Meanwhile, a Cancer Action Plan is expected to be announced by Health Minister David Clark later this month.