Every three months, a package containing cancer medication arrives at Trevor Gately’s Nelson home from India.
The 73-year-old was diagnosed with multiple myeloma in 2016. A form of blood cancer, it causes cancer cells to accumulate in the bone marrow, where they crowd out healthy blood cells.
After his initial treatment, 16 weeks of chemotherapy followed by stem cell treatment then another round of chemo, Gately was given the choice of taking a prescription drug, lenalidomide, to keep the cancer at bay. It costs around $6500 for a months supply in New Zealand, but purchasing a generic form of the the same drug online from Shubham Pharmaceutical in India costs $280.
Gately is concerned proposed legislation will change that and prevent individuals from personally importing prescription medicines.
The Ministry of Health is working on a Therapeutic Products Bill that will replace the Medicines Act and establish a new regulatory scheme for therapeutic products, putting an end to personal importation of prescription medicine.
It was Gately’s haematologist who told him for those who lenalidomide wasn’t funded, a generic version of the drug was available from pharmaceutical companies overseas for a fraction of the cost.
With a prescription from his haematologist, he has imported the drug for the last two years. He has three-monthly blood tests to monitor his cancer markers and they showed the medication was effective. He knew of others with myeloma who were doing the same thing.
“Me, along with hundreds of other people have been successfully importing genetic medication without any problems,” Gately said.
In his search for answers he had written to the Ministry of Health, the Health Minister, the Cancer Society and other MPs. He had filed an Official Information Act request asking for evidence of people being harmed by imported drugs but hadn’t received any.
“They say they are wanting to protect us but it’s hard not to feel the pharmaceutical companies have their noses out of joint because people like me can import cheap generic drugs.
“If they can convince me that what I am doing is to my detriment then I will stop doing it.
Medsafe manager of compliance management Derek Fitzgerald said information was not specifically collected about harm or adverse reactions relating to imported prescription medicines.
All adverse reactions to all medicines were analysed, but there was no distinction for medicine that had been personally imported.
Fitzgerald said New Zealand had a well-regulated system for the supply, delivery and funding of medicines.
“We have had no known instances of counterfeit medicines in our publicly funded medicine supply system and there are strong controls to prevent substandard medicines being distributed.”
“It’s not just something I have found online and thought, this looks interesting, it was presented by specialists.”
He is prescribed lenalidomide as a maintenance medication, to slow the cancer’s inevitable return. The research showed those who did, lived longer.
Gately said it wasn’t an easy choice, but “it’s hard not to feel that you want to live as long as you can”.
But there was a “huge cost difference” between importing the generic drug and purchasing the Medsafe approved version.
For those whom the medication was too expensive, Gately said it became a choice of not taking it and facing cancer.
“For us with myeloma, our best chance is to stay on it.”
He said there wasn’t the same certainty for individuals buying and importing medicines from overseas where there were significant risks.
In 2017, Customs referred 15,802 medicines that arrived in New Zealand by post to Medsafe for examination. Of those, 9038 were destroyed and 3128 were sent on after the recipient provided evidence, a doctor’s authorisation, that they were able to be legally imported.
The bulk of the destroyed medicines were for for erectile dysfunction followed by antibiotics then medicines for other conditions.
Medicines that weren’t publicly funded were not tested by Medsafe, nor was information recorded about their potential harms.
Fitzgerald said medical practitioners authorising the use of unapproved medicines needed to consider their decisions and weigh up the risks and benefits to the patient.
Ministry of Health public health system policy acting group manager John Doyle said consultation on the new Therapeutic Products Bill, which would replace the Medicines Act, began in December and closed on April 18. There would be another opportunity for public consultation following its referral to the select committee.
He said the main difference from the current scheme was that, once a doctor had prescribed an unapproved medicine, the consumer could not import it themselves. Instead, they would need to obtain the medicine either directly from the issuer of the special clinical needs supply authority or from a pharmacy.
The proposed changes were a result of the level of counterfeit or substandard products in many overseas markets. Such products posed significant safety risks that consumers were unable to detect.