Rare disorder drug – cut the red tape

OPINION: Dylan Barker lives with a rare genetic condition turning muscles, tendons and ligaments to bone, locking him into his body. There is a drug in Australia for fibrodysplasia ossificans progressiva but Barker can’t get it imported here because of red tape. Why do we allow Barker to suffer just because of bureaucratic barricades? An MP from each side of the house gives their views.

Iwas very sorry to hear about Dylan Barker’s serious genetic condition. I empathise with his situation and acknowledge the frustration he and his family are experiencing in accessing treatment, more specifically the drug palovarotene.

I’m told it is possible to import palovarotene into New Zealand.

It hasn’t been scheduled as a prescription medicine here, but it wouldn’t be stopped at the border if Dylan or a third party imported it for his personal use.

There would be a cost to purchase the drug though, and the party importing the drug would likely have to pay GST on it, which could be significant.

The methods for valuing imported goods, including medication, are described in the Customs and Excise Act, which determines the amount of GST payable.

From an earlier Stuff article about Dylan, I understand he was granted compassionate access to the drug in Australia. In the event that this access was

free of charge, it is just the cost of GST that would have to be borne by him.

The article also mentioned that Dylan had received support from Rare Disorders New Zealand, which had been dealing with Customs and others to find a solution.

If it is possible for a third party to import the drug for Dylan, it would be the third party who would have to bear the GST cost – not Dylan.

I understand Customs and Inland Revenue have discussed the general policy in this area and are open to looking at the issue of import GST on donated medicines, to see if a long-term solution could be developed. I will follow this up with the Ministers of Customs and Inland Revenue.

These facts are admittedly of no consolation to Dylan right now. However, I want to thank him for drawing attention to an important issue with current processes.

I think it’s fair to say that for the most part our teams at the Ministry of Health, Inland Revenue and Customs administer systems that serve New Zealanders well. But every so often a case arises that spotlights some room for improvement.

It’s important we continue to improve our systems so they work well for all New Zealanders.

I want to conclude by sending my best wishes to Dylan Barker and his family. Their perseverance – and that of the dedicated people at Rare Disorders New Zealand – is an example to us all.

and safe use of medicines was provided to health professionals and consumers. While some may view this process of regulation by Medsafe as bureaucratic and slow, it’s essential we ensure Kiwis are safe when accessing medicines.

New Zealand has also long benefited from having PHARMAC. The previous National Government increased medicines funding by an average of $24 million per year, meaning 800,000 more New Zealanders benefited from access to medicines.

By contrast, this Labour-led

Government has given less than half of that. What this means is Kiwis are missing out on medicines which would have been funded. We should be increasing PHARMAC funding at the same level as the previous National Government did, to ensure more drugs are available to Kiwis.

Unfortunately the Government’s commitment to establish a rare disorders medicines fund at a cost of $20 million has also not been delivered. It’s important this fund is delivered so that people like Dylan can access the medicines they need far easier and National will do this.

PHARMAC also currently assesses medicines for rare disorders against the same criteria as more widely used medicines, making it extremely difficult for those medicines to be approved. PHARMAC should be required to review its criteria and formula for rare disorders medicines to ensure they aren’t overlooked simply because they benefit a small number of people.

This will help cut the red tape.