A terminally ill man who was unable to afford $540,000 for medication to extend his life has been offered the drugs for free, thanks to a little-known scheme that could help many other cancer patients. The Nelson man has a rare type of non-Hodgkin lymphoma and has been given two years to live without treatment. But he and his wife were struggling to find the money for the drug Brentuximab. Desperate for something to extend his life his wife began researching alternatives.
One option was moving to Australia, where each of the 16 rounds needed would cost A$160 ($167) after government funding, compared with about $32,374 in NZ.
Another option was sourcing the drug from Europe and bringing it home for treatment. Four trips would be needed to source enough but at a cost of $22,300 per round it would still be cheaper than buying it in New Zealand, even with additional expenses such as airfares.
There were also other costs, including $7680 to transport it to New Zealand and $17,000 for a private hospital to administer it.
While their medical insurance would have covered $300,000, the couple would have had to remortgage their home and empty out the man’s KiwiSaver to fund the rest of the drug, which is expected to extend his life up to five years.
Fortunately, the couple was told by an acquaintance overseas about a little-known scheme called Compassionate Access Programme (CAP) where patients can apply to drug companies for free treatment. They applied through the drug-maker’s Australian office and found a fortnight ago he’d been accepted. As a result the 58-year-old man, who did not want to be identified, will now begin the almost year-long treatment for free later this week. His wife said being accepted on the CAP was a miracle, while her husband felt as if he had won Lotto.
“I never dreamed it would be paid for in full – that’s way better than I ever dreamed,” she said. “It’s shocking that people don’t know this is available, but also there’s just so many people that are in the most horribly desperate situations.”
They believed there needed to be a database where specialists could find information about the CAPs available and the eligibility requirements.
Oncologists have described schemes like this as a marketing tool drug companies use to promote products that are not approved by Medsafe, the Ministry of Health’s regulatory body.
While the schemes are great for those who can’t afford drugs, they also come with some catches.
The supply of medication could stop if Medsafe approves the drug and the patient is then stuck being unable to afford ongoing treatment. They also may not be covered by ACC if anything goes wrong because the drug is not approved here.
But the couple are ready to take the risks if it means he lives longer.
Access to lifesaving drugs is a growing issue in NZ, with cancer patients increasingly relying on fundraisers and travelling overseas to buy more affordable medication.
In May eight petitions from five cancer groups were delivered to MPs urging better Pharmac funding for drugs. Hundreds rallied in support.
Breast Cancer Foundation research manager Adele Gautier said compassionate access programmes for investigational cancer drugs appeared to be shrouded in mystery and they need to be better publicised.
“Drug companies in New Zealand can’t promote unapproved medicines, so unless an oncologist or a patient is actively working to find out what’s available, they might never know about them.”
Gautier said getting a patient access to a CAP could be time-consuming for doctors who were often busy giving short-term treatments to manage symptoms.
“Given that these are usually a last resort for patient, and delays can be life-shortening, we’d like to see this process made much easier for Kiwi patients and their doctors.”
Leukaemia & Blood Cancer NZ chief executive Peter Fergusson said the foundation was seeing a reasonable number of patients getting compassionate access from NZ-based drug companies, but it was highly dependent on the disease and their eligibility for the CAP such as the disease burden and their suitability for the medication.
“It is frustrating that New Zealand often lags behind the rest of the world for the approval and funding for life-changing cancer drugs.”
A spokesperson for pharmaceutical company Pfizer said requests for compassionate access to medicines were considered case by case.
National Party health spokesman Michael Woodhouse said he knew CAPs were offered in NZ but he had very few details about them.
He said it was frustrating cancer drugs were 75 per cent cheaper in countries such as Malaysia because it appeared the list price of the drug was scaled to a country’s wealth.
A spokesperson for Health Minister David Clark said the minister was also aware some Kiwis were buying prescription medicines overseas because prices were high in NZ.
Pharmac confirmed it was considering funding Brentuximab. Medsafe compliance manager Derek Fitzgerald said it has not received an application to approve the use of Brentuximab.
Dr Graeme Jarvis of Medicines NZ said it supported the use of the schemes in the short term, but said more investment was needed by the Government to allow these medicines to become publicly funded.
Article written by Nikki Preston (NZ Herald)