Newsletter: Autumn 2022

Dear All,

I am writing this today and hearing about the 20,000 plus daily Covid-19 cases being reported which we know is probably half of the real numbers. This issue will be of utmost concern to all of us who are immuno- compromised so endeavour to keep safe. Since my last letter, I have managed to secure a one-on-one meeting with the Hon. Andrew Little, Health Minister. He listened to what I had to say about myeloma, and I gave him a Copy of the Burden of Disease Report. He admitted that he knew very little about myeloma so at least now the condition is on his radar.

We have also had a response from Minister Little following an excellent letter from one of Our trustees Dr Henry Chan. The response does not offer me much hope that we are going to achieve any traction in our attempts to improve the drug funding situation.

We also await the much-anticipated report on Pharmac due out very soon and is reputed to be quite critical of the organisation. I think it is indictment of the Pharmac model that we have had no new drugs funded for myeloma in over 5 years. We are rapidly falling behind Australia in access to drugs such as daratumumab and carfilzomib.

It is great that the Malaghan Institute are looking at CAR-T cell therapy for myeloma, but this will be some years before it is introduced into clinical practice. I think it is important that the myeloma community in New Zealand write to government and Pharmac and point out the deficiencies in the system.

The whole health care system is under a lot of pressure, and we are hearing of significant delays in some people getting their auto Transplants in a timely fashion. I wish I had some good news to pass on, but this is the world we are living in, and we must make the best of it.

Let us hope that there may be some good news in the May budget.

Keep safe.

Nga mihi

Ken Romeril