We need your help to
Keep Us
Living
New Zealand lacks most of the myeloma treatments which are available overseas.
We can’t wait any longer – we desperately need new funded treatments.
Approximately 3,000 New Zealanders are currently living with Myeloma. Around 400 new cases are reported each year, and about 200 die.
Myeloma is the second most common blood cancer in New Zealand. It is an incurable, relapsing remitting disease, requiring a new combination of treatments to be used at each relapse, or when serious side effects mean different treatments are needed. Because myeloma is a highly individual disease, clinicians need a range of treatments to tailor their approach to the specific patient’s needs.
In New Zealand, however, we don’t have access to a good range of treatments
Patients are limited in their treatment options, one of which is thalidomide – the old drug from the 1950s.
DRUGS WE DESPERATELY NEED FUNDED IN NEW ZEALAND
Daratumumab
Carfilzomib
Isatuximab
Elotuzumab
Belantamab mafodotin
Talquetamab
Teclistamab
Ixazomib
Selinexor
Elranatamab
CAR T-cell therapy
Many of these are not new drugs. Daratumumab is funded in 49 countries, including Australia, Canada, and the United Kingdom. Pharmac has had an application for it since 2017! Daratumumab is standard of care overseas and in private treatment in New Zealand, but the cost privately (approx. $240,000 in the first year for daratumumab) puts it out of reach for most. If Pharmac funded daratumumab, the cost to New Zealand would be significantly less.
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These treatments are easier to tolerate than older drugs, provide effective treatment for longer, and improve patients’s qualify of life, with longer times between relapse and provide significant survival benefits.
Patients who have severe side effects from older treatments desperately need these options.
Myeloma is not curable, but with innovations in treatment over recent years, in many countries it is now being seen and treated as more like a chronic disease, where patients are able to remain on treatment and keep well for increasingly longer. With newer treatments coming out overseas there is even talk of a cure in sight.
DID YOU KNOW
The UK has seven more funded myeloma treatments than New Zealand and Australia has five more.
HOW YOU CAN HELP
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EMAIL/ASK TO MEET WITH YOUR:
Your MP or the MP of your loved one with myeloma,
the Prime Minister,
the Minister and Associate Ministers of Health
the health spokesperson of other parties
Pharmac and tell them they need to push for enough budget to fund these desperately needed myeloma treatments.
We have drafted template emails for you to use and adapt, or you can write your own. Email details are in the templates.
To Politicians
They need to give Pharmac sufficient funding for these medicines or they need to push for these medicines to have sufficient funding. The template letter and email addresses are here.To Pharmac
They need to seek sufficient budget from the government to fund these medicines, and they need to put daratumumab and the other myeloma treatments at the top of the Options for Investment list. The template letter and email addresses are here. -
Write a letter to the editor of your local paper about the need for daratumumab and better funding for Pharmac.
Contact a journalist and ask them to write an article about the need for better treatments for myeloma. Myeloma NZ can provide additional information if needed.
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Visit the Myeloma NZ Givealittle page
Sign up for our emails here so you are notified of any update with our Keep Us Living campaign.
KEEP US LIVING
