Our Advocacy Priorities for 2022 – CLL Advocates April Newsletter

Our Advocacy Priorities for 2022

CLL Advocates April 2022 Newsletter


April 2022


Dear Friends,


The year is well under way, and we’re firmly focused on where we need to direct our energies and resources this year.  We’ve agreed on the following as the key priorities for improving outcomes for CLL patients:

  1. Access to new treatments, notably BTK inhibitors, for relapsed CLL
  2. Reform of first line therapy
  3. Equitable access to clinical trials of unfunded CLL treatments
  4. The availability in NZ of testing to identify the IgVH mutation
  5. Prevention and management of infections in CLL patients, and
  6. Prevention or early detection of secondary malignancies in CLL patients.

As well as these CLL specific goals, we want to pursue the broader goal of achieving an effective, more meaningful patient voice in medicines funding decisions in NZ. (More on this in a future newsletter).

This is an ambitious agenda!  And we are a very small group, but we believe with your engagement and support, and the help of our donors, we will be able to make some headway.

We have a workplan for the year, and early on in the agenda is a series of patient focus groups to identify the specific issues of most importance to you, and how we can best help you with these. We’re also keen to hear any experiences you’ve had that can help us focus our advocacy efforts effectively.

These would initially be small groups of, say, four to six, and would be on Zoom, depending on the Covid environment and geographic constraints. They would be facilitated, friendly, café style discussions. Caregivers and family members would also be welcome.

We will get in touch with you soon to set up these discussions, but in the meantime please can you get in touch with us at trustees@clladvocates.nz to let us know if you’re interested.


Help required!

We’re also still greatly in need of help to keep CLLANZ going, so if there’s any task you’re willing to take on, no matter how small, please let us know!


Best wishes

CLL Advocates NZ Trustees