Newsletter: Autumn 2020

Hello Everybody

I hope that you are all coping with the lock-down as best that you can. It’s been a difficult time for many people and especially those that have had to have treatment delays such as auto transplants.

We were very pleased to be involved with the press releases for the Lenalidomide Post ASCT maintenance announcement that was rolled out from April one. There was an article on Stuff and the Dominion Post and soundbites on Newshub and The AM Show with Duncan Garner. Articles here. This move is likely to benefit around 120 to 130 patients and my sources tell me there has already been a good uptake. This was one of several proposals that we put in a submission to the Health Select Committee last year and also appeared before them. I think that this effort as well as personal clinical proposals to Pharmac shows that advocacy does make a difference. Myeloma New Zealand is the only organisation that advocates solely for myeloma patients and we feel that we are making progress in getting our voice heard by such groups as the new Cancer Agency and also interacting with Pharmac.

Fundraising is very challenging in the current environment and so please think of supporting our work through the Givealittle link here and on our website. There is more work to be done in 2020 and we need to advocate for more novel therapies in the relapsed/refractory setting such as daratumumab and carfilzomib.

The Facebook page is very active and we are closing in on having 360 members. We have had to put our planned regional seminars on hold because of the pandemic but hope to look at holding some later in the year, possibly by September. There is no doubt that 2020 will be a challenging year for everyone and the health budget will be severely impacted by events so far. Sorry to be so gloomy but we have to be realistic and continue to make our voices heard. Be safe and hope that we can move to Level 2 by May 11.

Kind Regards,

Ken Romeril