My brother is dying while this drug could save him
Pharmac’s refusal to fund cystic fibrosis drug Trikafta has life and death consequences, writes Bridget Donkin.
Pharmac announced two Fridays ago that Trikafta, a potentially lifesaving drug for those suffering with cystic fibrosis (CF), would not be funded in New Zealand unless further government funding was provided.
My younger brother Timothy was born with CF, a chronic life-threatening and lifeshortening illness that damages the lungs and digestive system. It is the most common life-threatening genetic condition affecting children in New Zealand.
Tim is 19 and studying at Victoria University of Wellington.
Every birthday since I was 7 I have prayed that there will be a cure for CF, a medication to help, a miracle moment. I guess I just forgot to include in the terms and conditions of my wish that the government would fund the medication.
As I waited for a flight out of Auckland a few months ago, my parents were sitting at Wellington Hospital with Tim while he was on life support.
The arteries in his lungs are corroding, which caused him to severely haemorrhage litres of blood from the lungs. He has had this happen often over the past couple of years as his lungs have deteriorated, but this time it was especially bad and he ended up in intensive care.
A few years ago Tim had a double organ transplant of the pancreas and liver. If he does not receive Trikafta, he will be placed on the waiting list for a lung transplant. There is a five-year survival rate of about only 50-60% for lung transplant patients.
Tim has been denied compassionate access to funded Trikafta in New Zealand.
This latest announcement means he will have to move to the UK in order to access the medication, which is funded there (and in more than 30 other countries). He will be moving away from his friends, parents, support system and the country he has grown up in.
My brother is kind and funny. He was,
and still is, a typical little brother, an annoying smartass whose greatest enjoyment in life comes from tormenting me. He is incredibly intelligent and witty. He has so much left to give to the world.
You can attach the blame wherever you like, with the Government, the last government, Pharmac. That doesn’t really solve the problem.
The problem is my brother is dying while there exists a medication that would stop this.
Over the past 19 years I have watched cystic fibrosis take elements of his life from him, as he missed school camps and parties with his friends. As he pulled out of football and then cricket. As he had to rethink his university degree. Constantly changing and adjusting his dreams.
And so I am now begging Pharmac, begging the Government, begging anyone who can help. Please don’t let it take his life.