Keep Us Living Campaign
The purpose of our campaign is simple - to get New Zealand myeloma patients access to treatments they desperately need, like Daratumumab.
New Zealand myeloma patients need access to more treatments
Our campaign focuses on Daratumumab because it’s our greatest need, but we also desperately need Carfilzomib, Elotuzumab and Ixazomib, Belantamab Mafodotin, Talquetamab, Teclistamab, Ixazomib, Isatuximab, Selinexor, Elranatamab, CAR T-cell therapy and other.
Myeloma is not curable (but is starting to be talked about), but with better treatments in many countries it is now being seen and treated more like a chronic disease, where patients are treated and keep well for increasingly longer.
In New Zealand, however, we lack many treatments available overseas
Australia has five more myeloma treatments funded than New Zealand. The UK has seven more! We are in a desperate situation where patients are dying earlier than they would overseas and missing out on trials because we do not have treatments which are standard of care overseas. It is heartbreaking that patients are not getting access to the medicines they deserve that could enable them to live long and productive lives.
Daratumumab is funded in 49 other countries and approved for use in New Zealand, but not funded by Pharmac.
Pharmac have assessed daratumumab as a high priority since July 2021 and say they would fund it if they have sufficient budget. We have no idea when that would be. It could be years given how long other medicines have been on the Options for Investment list. Carfilzomib is also on the Options for Investment list and in August 2025, Pharmac received an application for belantamab mafodotin.
Our campaign so far
The beginning of our campaign focused our attention at Pharmac and the government.
Myeloma New Zealand was established in 2016 and along with education and support, an important aim was advocacy - to get patients access to daratumumab and other medicines.
Our founder, the late Dr Ken Romeril who was a haematologist, knew that New Zealand patients needed what was available overseas. Dr Romeril lead years of advocacy to get New Zealand patients access to daratumumab, lenalidomide and pomalidomide.
In 2022 we decided enough was enough - Pharmac had an application for daratumumab since 2017 and had not funded a new myeloma treatment since 2014, so in September 2022 we kicked off our Keep Us Living campaign.
We started off by making a 49-page submission with 17 patient stories to Pharmac in support of daratumumab being funded. Daratumumab is a type of targeted cancer drug called a monoclonal antibody. It works by targeting a protein on myeloma cells so your immune system can recognise them. The immune system can then attack and kill the myeloma cells. The submission focused on daratumumab for relapsed myeloma, because Pharmac was considering it, but we are also asking for other desperately needed treatments like carfilzomib and belantamab mafodotin which Pharmac also have applications for.
We were the first group to present to Pharmac’s Pharmacology and Therapeutics Advisory Committee (PTAC). This was in November 2022.
We’ve now had numerous meetings with Pharmac officials and the Minister of Health, getting our message across.
We’ve been featured on various media - see our media tab.
Numerous posts have been shared across our social media platforms
Patients and their loved ones have written to MPs including the Minister of Health.
Pharmac need more funding so they can fund more myeloma treatments
Pharmac have some of the medicines we desperately need on their Options for Investment list. That means they will be funded if Pharmac have enough money. But, in April 2023 there were 109 medicines on the list. We don’t know where the myeloma drugs rank because there is no transparency – we need to get them to the top of the list. These are not new medicines to be considered. We’ve been waiting too long.
Pharmac said:
There are a number of multiple myeloma treatments on our Options for Investment list which means they are medicines we would like to fund when we have the budget available.
Pharmac’s application tracker shows applications have been in since:
Lenalidomide first line – Apr 2016 - available Aug 24!
Pomalidomide – Nov 2015 - available Aug 24!
We have been waiting too long! When will funding be available?
We need Pharmac to push for more budget from the government so these can be funded and we need the government to step up and fund Pharmac to a level that they can fund these desperately needed medicines.
That’s what’s where our focus is going right now – the government. That’s where you can help too – we need you to help get the message to the government that they must give Pharmac sufficient funding for medicines like daratumumab, which are on the options for investment list. The covid response has shown that the government knows investing in health is the right thing to do, and they can choose to do the same again.