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, Talquetamab, Teclistamab, Ixazomib, Isatuximab, Selinexor, Elranatamab and CAR T-cell therapy.
Myeloma is not curable, 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. 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 48 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.
Our campaign so far
The beginning of our campaign focused our attention at Pharmac and the government.
In September 2022 we made 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 focuses on Daratumumab for relapsed myeloma, because Pharmac is currently considering it, but we are also asking for other desperately needed treatments.
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 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!
Daratumumab – Nov 2017
Carfilzomib – Aug 2018
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.
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.