Pharmac stoush: ‘I can’t believe people are not getting this drug’

By Ruth Hill of RNZ

An internal turmoil at drug purchasing agency Pharmac has blocked funding for a life-prolonging drug for bowel cancer patients that is available in 52 other countries.

Meanwhile, patients are going into debt to pay tens of thousands of dollars for the drug Cetuximab, which can extend their lives for months or even years.

Maddie Thomas is one of them. He went to the doctor in July 2018 with what he thought was a stomach ache and ended up with a diagnosis of terminal bowel cancer and a prognosis of six months to live. She was 51 years old.

He had two years of chemotherapy through the public system, but in June of this year, his body couldn’t take it anymore.

He was unable to eat, was constantly vomiting, and had an irregular heartbeat.

One oncologist suggested paying privately for the immunotherapy drug Cetuximab, which targets his particular type of cancer.

Thomas ruled that out earlier because he didn’t want to leave his family in debt after his death.

But with five children and seven grandchildren, she had everything to live for.

“When someone tells you that there is an option and you have no other option, you just have to find the money. And we just had to find the money, so we did it: we borrowed money from our house, so we had to use our mortgage.

“We were mortgage-free and had to go into debt so I could get some treatment.”

He has had eight treatments and describes the results as phenomenal, with blood results showing that his blood cancer marker had dropped dramatically.

“In June I was facing death. I can’t believe people are not being given this medicine.”

Now that she has spent $ 60,000, the drug company will give her the drug free for a year, but she and her husband will have to find $ 3,500 a fortnight to pay for administration at a private hospital.

Auckland-based gastrointestinal cancer specialist Dragan Damianovich said he has seen Cetuximab extend the lives of some patients by five years.

He said it was “heartbreaking” as many patients cannot afford it.

Three thousand New Zealanders a year are diagnosed with bowel cancer, which kills as many people as breast and prostate cancer combined.

Damianovich said Pharmac hasn’t funded any new bowel cancer drugs in 20 years.

The agency’s cancer treatment expert advisory group recommended funding for Cetuximab, which may be effective in up to 40 percent of bowel cancers.

But its top oversight committee disagreed with the evidence, saying late last year that the drug should be rejected.

Cancer Society medical director Chris Jackson said that points to a fundamental problem with the Pharmac system.

“This is an example of how the expert committee says one thing and the general oversight committee says another. And we don’t have a process to resolve that level of dispute.”

Jackson suggested that Pharmac should adopt something like Britain’s independent evaluation program to score clinical benefits in a transparent way.

“This all feels like groundhog day to me. We’ve had this conversation with Herceptin, with Keytruda for melanoma … for a variety of breast cancer drugs over the years, for drugs for diabetes more recently.

“And this is part of a larger problem which is that drug funding in New Zealand is lagging behind that of other countries.”

Politicians claim to leave drug financing decisions to the experts, but that’s a way out, in Jackson’s view.

“The people who are responsible for the growing gap between drugs in New Zealand and drugs in Australia are not Pharmac, they are doing the best they can with the budget they have, the people who set the budget and set the rules for Pharmacists. they are responsible and that is fundamentally political ”.

Thomas said the government cannot afford to ignore bowel cancer.

“A couple of weeks ago, Jacinda Ardern came out and said that no one in New Zealand should have to depend on their family to buy a house and yet they don’t care that people in New Zealand depend on their family to stay alive. .

“You know, there is an inequity in what she said is not correct.”

Pharmac declined an interview.

In a written statement, its CEO, Sarah Fitt, said Pharmac considered the recommendations of different groups of clinical advisers in parallel when conducting its evaluations “within available funds.” He said his job was to look at all the evidence and make a decision in the interest of all New Zealanders.

The government has announced an independent investigation into Pharmac, and Health Minister Andrew Little will reveal the details early next year.

– RNZ