1 Feb 2016

Kiwis join Australian hepatitis C buyers' club

From Nine To Noon, 9:08 am on 1 February 2016

Growing numbers of New Zealanders are getting backdoor access to revolutionary hepatitis C drugs at a fraction of the cost. 

Hepatitis C patients and supporters demonstrate against high drug prices outside US laboratory Gilead Sciences office in Madrid.

Hepatitis C patients and supporters demonstrate against high drug prices outside US laboratory Gilead Sciences office in Madrid. Photo: AFP

More than 90 percent of people treated with the drugs Sovaldi and Harvoni are cured of hepatitis C, which causes liver disease and autoimmune disorders, but at $NZ1500 per tablet the treatment is prohibitively expensive for most New Zealanders.

The recommended 12-week course of the drugs costs more than $140,000.

Although Pharmac is getting clinical advice on the therapy, it does not yet fund the drugs here. In New Zealand, it's estimated about 55,000 people have hepatitis C.

But with India licensed to produce generic forms of the drugs, an Australian "buyers' club" has enabled patients to get the medication from India for anywhere between $2000 and $4000 per 12-week. 

FixHepC was set up by Tasmanian GP James Freeman and so far 114 hepatitis C patients from New Zealanders have used the service. 

He told Nine to Noon the Hobart-based organisation began with a trial in mid-2015 which went large scale in September.

"We noticed a number of New Zealanders were voting with their feet - popping over to Australia to pick up medication, and travelling home and starting treatment."

About 114 New Zealanders are thought to have accessed hepatitis C medication through the FixHepC channel.

How can patients be sure the medicines are safe?

Dr Freeman said it was an unusual situation, giving people a script but asking them to access the medication through parallel importing. To ensure patients got exactly the medicine they needed, he said the medication was rigorously tested.

"Initially we were using medicine out of China and that was tested at a university here ... and also at a national measurement institute where it was certified to ensure that it was exactly what it was."

He said the first patient to use the medication was cured within four weeks.

Far from just surfing the internet for medicine, Dr Freeman said steps were taken to make sure the supplier was trusted.

"Supply chain integrity is the primary thing if you're going to purchase medicine ... outside a retail pharmacy."

He said his supply now came from India because that country is home to large drug manufacturers such as Cipla, which make a suitable mix of medications to treat hepatitis C.

He said the method was totally above board; both Australian and New Zealand legislation allows a patient to import 12 weeks of medication for their own use. But he said a prescription from a patient's local doctor was necessary so the treatment could be monitored safely.

Prescription needed

"If it's legal for you to bring it in, then it would appear that the problem can be solved by parallel importation."

He said there were two legal pathways for medication importation to New Zealand, both of which require a prescription - one from a New Zealand doctor for importing medicine by mail and if you travel to another country 

"For you to import it by mail you need a New Zealand doctor's prescription.  For you to travel to a country like Australia or India to pick up medication you need a prescription from that country."

Dr Freeman said it was legal to bring prescribed medication into New Zealand through Customs, but not all doctors would prescribe it, although some were happy to treat people taking the drugs by doing the required blood tests and looking after the patient's health.

"In both New Zealand and Australia initial scepticism about the utitilty and authenticity of these medications have been replaced by seeing the results with people's own eyes and it becomes impossible to argue with the fact that these medications are doing the job they're supposed to."

Dr Freeman said New Zealand doctors were prescribing through the system his buyers' club had set up, which meant they would get their medicine via mail, but others had got a script through him or other online doctors and travelled to Australia to collect it.

He said doctors are inherently conservative but many have been converted as they have seen such excellent results, with liver function returning to normal and unwell patients becoming well.

Parallel import keeps drug companies in check

Cases of hepatitis C are expected to continue to grow in the western world, with many baby boomers who experimented with drugs in the 1960s and 70s only now learning they have the disease. It can be transmitted through blood transfusions as well as through intravenous drug use and can lie dormant for decades.

The new drugs available through Dr Freeman's club are patented by United States company Gilead Sciences. Dr Freeman said the $NZ140,000 pricing (for a 12-week course) was under investigation in the US.

"The price was set at the absolute maximum the market could bear, with absolutely no respect for the fact that it was going to bankrupt the Veterans' administration or Medicaid - it is extraordinary pricing for a medication.

"It's dreadfully sad that we have invented a cure for one of the five big infectious disease killers in the world and we're not deploying it."

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