Get involved

Help us advocate for better myeloma treatment.

Keep us living campaign

In September Myeloma New Zealand put a submission in to Pharmac in support of funding for daratumumab and other treatments. The submission can be found here.

There have been no new myeloma treatments funded for eight years and New Zealand patients desperately need more options. We’re asking you to take one small step to help us with our campaign. See below for how you can help.

Our key messages for the need for funding better treatments can be downloaded here and are at the bottom of this page.

Campaign progress to date

• Our 49-page submission with 17 patient stories went to Pharmac at the beginning of September.
• We’ve been featured on RNZ and Newstalk news.
• RNZ wrote an article about us. Here is the link.
• Pharmac are seeing if it is possible for us to present our submission in person at their November meeting
• Numerous posts have been shared across our social media platforms
• Pharmac are seeing if it is possible for us to present our submission in person at their November meeting
• Numerous posts have been shared across our social media platforms
• Patients and their loved ones have written to MPs including the Minister of Health.

We need your help – one small step each, one giant voice together

The next two months are key for our campaign to get daratumumab funded. There are some key meetings and decisions coming up at Pharmac, and we need Pharmac and the government to hear our voices.

We’re asking everyone to take one small step before Christmas so that our efforts together will be one giant voice.

You could:

• Myeloma story
  • Write about your experience of living with myeloma or loving someone who has myeloma. Share it on social media or send it to some of the people below or the media.
• Social media:
  • Share a Myeloma NZ post from one of our social media pages
  • Change your Facebook profile picture to support the campaign – here
  • Write a social media post.
  • Tag your MP/Minister or Health/the PM/Pharmac in a post. If on Facebook ensure it is set to public – remember to change your posts back to private for your next post.  

• Email and/or ask to meet with:
  • Pharmac
  • Your MP or the MP of your loved one with myeloma,
  • the Prime Minister,
  • the Minister and Associate Ministers of Health
  • the opposition’s health spokesperson

There are three templates you can use:

·       Short email to MPs about Pharmac funding using this template here.

·       Short email to Pharmac about the need for daratumumab using this template here .

·       Longer letter to everyone – This template here can be used to write to everyone above. It is a longer letter which you need to edit to suit your situation. You can copy and paste it into an email if you would like.

It is absolutely vital that Pharmac hear how desperately we need daratumumab funded before they make a decision towards the end of the year, so if you are short on time/energy then please just send the short email to Pharmac.

Contact details are in each template.

• Media:
  • 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.
• Donate
  • To the Myeloma NZ Givealittle page – here
• Are you signed up for our emails? Sign up here so you are notified of any update with our Keep Us Living campaign

Thank you so much for your support

Myeloma NZ Trustees

nichola@multiplemyeloma.org.nz  

admin@multiplemyeloma.org.nz

Key messages

This is also downloadable here

Myeloma funding in New Zealand – the urgent need for daratumumab and other treatments

No new treatments have been funded in New Zealand for eight years. We desperately need new funded treatments.

Our Pharmac submission

• In early September 2022, Myeloma New Zealand made a submission 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 pomalidomide, carfilzomib, elotuzumab and ixazomib for use in relapse, and for lenalidomide to be used in initial treatment instead of cyclophosphamide. 

Key points on the myeloma landscape in New Zealand:

• Multiple myeloma is not a rare disease. Approximately 2500 New Zealanders, of whom 60% are male, are currently living with myeloma. Around 400 new cases are reported each year, and 180 deaths.
• Myeloma is a 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.
• 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. 
• In New Zealand, however, no new treatments have been funded for eight years. Patients are limited (depending on whether or not they have had a stem cell transplant) to two or three lines of treatment, one of which is thalidomide, the old drug from the 1950s. And then that is the end of the funded treatments.
• Treatments like daratumumab, carfilzomib, pomalidomide, elotuzumab and ixazomib for relapsed and refractory myeloma, and lenalidomide in initial treatment are Medsafe approved and available privately in New Zealand. Daratumumab is funded in 48 countries, including Australia, Canada, and the United Kingdom.  These are not new drugs: they are used as standard of care overseas and in private treatment in New Zealand, but the cost privately (approx. $220,000 in the first year for daratumumab) puts them out of reach of most.
• Australia has five more funded treatments for myeloma than New Zealand.
• Daratumumab, carfilzomib, pomalidomide, elotuzumab, ixazomib and lenalidomide, provide significant survival and quality of life benefits.
• These treatments are easier to tolerate than older drugs like thalidomide and cyclophosphamide, provide effective treatment for longer, and allow patients to live a more normal life, with longer times between relapse.
• Patients who have severe side effects from a treatment desperately need treatment options.
• Clinicians have been calling urgently for five years for daratumumab to be funded in NZ – they describe the distress they feel when having to tell patients they have no more treatment options as ‘heart breaking.’
• Pharmac’s own expert committee accorded daratumumab high priority in December 2021.
• Better myeloma treatments will help us regain control of the disease as early as possible in its course, maintaining quality of life and giving us a chance to survive until the next new breakthrough line of therapy becomes available.
• Māori and Pasifika (who are already over-represented in the myeloma population) are less likely to have a stem cell transplant and their overall survival is worse. We need better treatments, so these patients are able to live longer on each treatment, with less taxing side effects.
• Not funding effective treatments for myeloma is very unfair. Patients with other chronic diseases like diabetes are treated for their entire life. Myeloma patients’ lives should not be limited by the number of funded treatments available: they should be able to continue to access treatments as needed. New Zealanders hit by accidents or emergencies will always receive the best quality treatment and care, regardless of cost. Myeloma patients should too.