Newsletter: January 2020

Happy New Year to everybody.

It was a very busy and productive year in 2019. Thanks to everyone who has contributed in so many different ways.

The main event for 2019 was the launch of the Myeloma Burden of Disease report at the Parliamentary breakfast. Follow this link for details. A plethora of ideas came out of the workshops and the board will be looking at ways to implement some new initiatives. I want to welcome on board two new trustees namely Dr Henry Chan from North Shore in Auckland who will bring considerable knowledge and enthusiasm to the group. We also are pleased to have Joy Wilkie who also brings much enthusiasm and ideas and has been involved already in the march to Parliament and with a select committee attendance. See their profiles here.

The Facebook group continues to be very interactive and we now have over 318 members. There are still a lot of people that could join, so continue to spread the word. You can apply here to join.

I met this week for a very productive session with Professor Diana Sarfati, interim Chief Executive of the Cancer Control Agency, and her PA, Dawn. Diana outlined her plans for the next year and it is going to take over six months to get things set up. I gave her copies of the Myeloma Burden of Disease report and again pushed hard that blood cancers are important and must not be overlooked. It is helpful that there has been a haematologist appointed to the Clinical committee. Diana has asked me to attend a Consumer Engagement Hui in February next year and this will involve consumer groups, so should be a useful event.

On a happy note, Pharmac has announced that the immunomodulatory drug lenalidomide will be funded for transplant-eligible patients from the beginning of April 2020. Read about it here. This will be for use as maintenance post an auto-transplant based on the positive findings of the MRC XI UK trial. There is some concern that they have indicated that the drug should be commenced within four months post the auto-transplant. This is clearly too restrictive and Dr Henry Chan and myself have both responded to Pharmac and asked for the period to be extended to nine months to allow for some consolidation treatment to be delivered. We also put out a press release on 14 January about the proposal. This was covered by medical news publication New Zealand Doctor and the Otago Daily Times ran a story and interviewed a member.

This year we will continue to advocate for patients and there are still more treatments that are not being funded and represent an unmet clinical need.


Ken Romeril