Newsletter: October 2019


A lot has happened since my last newsletter, but hopefully you’ve been keeping up with some of this through our website.

The big event of the year has been the launch of our new Myeloma Burden of Disease report at a breakfast in Parliament on 26 June. Read about it here.  This three-part suite of reports is a major, landmark piece of work and the first comprehensive study of myeloma in New Zealand.  The work has been very well received, and gained wide media coverage.  For a brief overview of findings I encourage you to read the summary  – Managing Multiple Myeloma in New Zealand: the Way Forward and also the results of our survey of patients,  Managing Multiple Myeloma in New Zealand: Patients’ Perspectives. We will shortly have a video of the event up on our website.

Thanks to all of you were able to attend the event, and if you would like hard copies of the two summary papers please get in touch.

As well as charting the advances in treatment and patient survival in recent years, the study has given us a much greater understanding of the human and economic costs of myeloma. Likewise, its conclusions regarding the need for more equitable access to treatment for patients around the country and the urgent need for New Zealand to fund the modern myeloma treatment options available in other developed countries, provide a strong platform for our advocacy activities. This continues to be the main focus of our work.

In that regard we made a submission to the Health Select Committee following our march and petition to Parliament calling for the most urgently needed medicines to be funded.

This week we held a patient seminar in Dunedin in partnership with Leukaemia & Blood Cancer and the Southern District Health Board. A video of this will be posted on the website shortly.  A stepped up programme of seminars around the country is currently being planned.

Meanwhile our private Facebook group is now approaching 300 members, and continues to host great discussions. If you haven’t joined you can apply here – even if you don’t wish to engage actively I’m sure you’ll find the discussions of interest.

Among the posts is this link to the Ministry of health’s survey/consultation on priorities for cancer action in New Zealand.  Do take this opportunity to have your say.  It closes on 13 October.

As a new feature for patients and carers, Myeloma NZ is starting up “Ask the Expert”, a series of online interviews with a range of myeloma experts. We will post the pilot of this – on smouldering myeloma – this week, and are asking you to send in questions you may have for future interviews.

Finally, save the date for our Wellington end of year event on 11 December.  Details to come.

With best wishes

Ken Romeril
CEO  Myeloma NZ