Get involved

Help us advocate for better myeloma treatment.

Keep us living campaign

Myeloma NZ has made a submission to Pharmac, which can be found here, urgently calling for modern treatments for myeloma, and we need your help. It’s 8 years since a new myeloma medicine was funded here, leaving us way behind the rest of the world. Below are some of the main points about why we need better treatments. But to help explain how desperate our situation is and to make a compelling case, we need your stories. They can be as short or as long as you like, signed or anonymous. Please see more details on this under How you can help below.

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, 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 line, unless the patient can afford to self-fund the next treatment or move to another country where they’re funded (e.g. Australia).
  • 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.

Despite all this, no new myeloma treatments have been funded in New Zealand for eight years! 

 The urgency:

  • 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. Why shouldn’t we?

Write to your MP

Writing to your MP is another way you can help us get the message across. You can write to MPs and attach a patient story or include it all in one letter. You can also request a meeting with your MP.  You can find your local MP here and their contact details here.

Write to the Minister of Health – Hon Andrew Little

You can find his details here:

Email: a.little@ministers.govt.nz

Phone: (04) 817 8707

Other ways to get involved

  • Write a letter to the editor of your local paper
  • Share our posts on social media.
  • Contact your local paper and see if they would like to write an article about living with myeloma and how desperately we need better treatments. We can provide additional information if needed.

Patient stories

You might want to write your myeloma story to send to your MP, or others such as the media, or share on social media, to show how desperate our situation is.

Some of the things you could include are:

  • When you were diagnosed with myeloma, what living with myeloma has been like and the impact it has had on you.
  • The treatment you have gone through.
  • Your family and why you need a better range of treatment options so you can be here longer for them.
  • You may have found it hard to continue daily life with the side effects of thalidomide so could talk from experience about the need for more modern treatments
  • You may have been on a trial or had compassionate access to daratumumab, pomalidomide, carfilzomib, elotuzumab or ixazomib and can talk about the benefits of them from personal experience.

A template patient story is here if you prefer:

Let us know if you’d like to help in any other way.

Thanks!

Myeloma NZ Trustees

nichola@multiplemyeloma.org.nz  

admin@multiplemyeloma.org.nz