Auckland widow slams drug companies for 'wasteful' regulations around unused medications

The death of a young Auckland father has sparked calls for drug companies to address the wastage of expensive medicines after someone dies.

Steve McCullough, 47, died in June - just four months after he was diagnosed with metastatic melanoma.

Doctors found a large tumour closing off his bowel after Steve fell ill with stomach pains over the summer.  

Steve underwent surgery to have a stent inserted and open up his bowel, which went well. 

His wife Deb says specialists at the time told Steve, "there is no choice. If you can afford Zelboraf, you still have to try."

She says the family paid more than $10,000 a month for the cancer drug and it started working after less than a week.

"Within four to five days we could physically feel the mass going down because you could feel it on the outside of his tummy... and within a week he was a very different person."

However, a surgical procedure to remove the stent six weeks later resulted in complications. Steve died on June 11, four months to the day after he was diagnosed.

He had just purchased his third month's supply of Zelboraf and had used only one pill when he died, leaving boxes of unsealed, untouched medication. 

Deb says plenty of New Zealanders could benefit from this expensive medication - yet the manufacturer Roche's advice is "just throw it in the bin". 

"I don't know anybody that would throw $10,000 in the bin, it's just so wasteful," she says.

A spokesperson for Roche, the drug's manufacturer, says while they feel for the McCullough family, they can't buy back medicines from individual patients due to regulations. 

Unlike other companies, Roche tries to reduce the burden on patients by capping the total amount individuals spend on Zelboraf at $50,000, even if they need more.

"We don't have enough money in our health system and yet we are prepared to chuck $10,000 worth of perfectly good specialist medication that somebody out there could bloody well use. I just don't understand it," says Deb.

Some specialists, like the Cancer Society's medical director Dr Chris Jackson, worry that perfectly good, sealed, unused and often highly expensive drugs are being wasted.

"We need to do everything we can to make medicines as affordable to get them into the hands of the people that need them," says Dr Jackson.

"I think it would be a good idea if the drug companies did offer them in smaller packet sizes so patients didn't have to buy quite so many at once... that would be a good solution, better still if the prices came down."

He says specialists are often asked to connect patients who are struggling to afford the medication with those who no longer need it - but ethically, they can't help.  

The Ministry of Health says it recognises this can lead to wastage, but it's not possible to guarantee a medicine hasn't been exposed to "tampering or contamination" once it leaves a pharmacy. They also say it's "unacceptable to take these risks and re-supply medicines that have been outside the controlled distribution chain".

Informal patient networks have sprung up around New Zealand for drugs like Zelboraf - but drug companies warn that is risky. 

"There's no point in giving it to someone if it's possibly going to harm them if it's been tampered with... I totally agree with that... but I've got three boxes sealed by [Roche] with expiry dates of 2021," says Deb.

"Someone who has been prescribed it could at least be trying Steve's leftover medication to see if it works before they commit to mortgaging their house to buy the rest?" 

She wants storage options at pharmacies or hospices where palliative care patients could store drugs safely, for others who may one day need them. 

A current review of the Medicines Act is underway, but the Ministry says it's too early to ascertain whether the wastage of expensive drugs will be addressed. 

Newshub.