The Cancer Society is renewing calls for a scheme that would allow patients to get access to drugs while their funding is debated.
It follows the death of Keytruda campaigner Jeff Paterson. A man who fought for the cause until the very end, even though he always knew the victory of getting Keytruda funded could come too late to save his own life.
In December last year Mr Patterson told Newshub: "They used the word low priority and I think it's a very high priority which is terrible, it's appalling really."
At the age of 16, Mr Patterson was diagnosed with melanoma, which spread to his lymph nodes, brain and lungs.
Last night, the 23-year-old lost his battle with cancer. Aptly, it was Daffodil Day.
A Facebook post said he "slipped away peacefully" surrounded by family.
He played a key role in the campaign to get funding for the advanced melanoma drug Keytruda, taking a petition to Parliament with 54,000 signatures.
In June, Pharmac announced it would start funding the expensive $11,000 dollar a month drug.
Dr Chris Jackson from the Cancer Society says Mr Patterson is one of the many who missed out.
"There are some conditions where there is genuinely a massive unmet need, like melanoma, where there no other options available and people like Jeff had no other options available to them."
The Cancer Society hopes Jeff's death won't be in vain, and will add weight to its campaign for a scheme to help people in the position Jeff was in.
They're the patients who fall between the cracks of Pharmac's negotiation stage.
"There needs to be a system where we can have temporary access to drugs whilst Pharmac go through their processes, if patients have no other treatment options, otherwise people are going to carry on missing out," Mr Jackson says.
Around 300 people a year die from advanced melanoma, but up to three-quarters of patients could see an improvement from using Keytruda.