CLL Advocates NZ Newsletter Issue 2

A number of you will be familiar with and regularly reading HealthUnlocked and Patient Power, two patient support and networking services (based in the UK and US respectively) that cover CLL in detail.

For those not yet in the habit, I can recommend both websites to CLL patients, and their families and supporters. You can access both through our website on our useful links page here, or go directly to Patient Power here and HealthUnlocked here. Access is free.

HealthUnlocked is published daily, with ten articles in each edition, that are mainly personal stories and discussion among people with CLL, and also occasional reviews of CLL-related clinical studies.

One such study, in the 20 July edition was on CLL and Covid 19. It provided an analysis of the assessment of 190 patients with CLL who had proven Covid 19 infection. Most presenting for analysis (79%) were in the “severe” category (requiring ICU admission and/or oxygen). This is likely to be related to their having had contact with a hospital. One third of these patients died of Covid 19. The severe group were older than the less severe group, so increasing age is a risk. There was a reduced rate of severe disease in those patients who had had treatment recently as opposed to those who had treatment remotely, or never.

Patient Power (PP) sends email updates to subscribers, generally weekly. Their CLL articles tend to have more of a scientific and medical focus. They also regularly post videos of interviews conducted by the PP CEO, Andrew Schorr, who is a long-term CLL survivor. He interviews well known clinicians on aspects of CLL, including the latest research and developments in the understanding and treatment of CLL. His wife, Esther, also writes regularly for PP.

An interesting recent PP article discussed CAR T-cell treatment, which is being trialled for CLL in research centres globally, including the Malaghan Institute in Wellington (Dr Rob Weinkove).

As an aside on CAR T-cell therapy, I recently enjoyed a book by NZ comedian David Downs on his experience with cancer (in his case, lymphoma). The book is entitled “A Mild Touch of the Cancer”. It is humorous and insightful on living with a serious health issue, and I commend it to you.

Finally, if you haven’t already seen it, check out our message on Facebook and on our website about our first CLL education event, to be held in Auckland, on Wednesday 14 October 2020.  The event will be jointly hosted with Leukaemia & Blood Cancer. For those unable to be there in person, you’ll be able to join us via Zoom, to hear talks by and discussion with three of our country’s foremost CLL clinicians. As well as providing the latest information on CLL we hope to extend our reach and ability to support people living with CLL, and I warmly encourage you to help spread the word and attend the event with your family and supporters. More detail on the event including how to register will be circulated soon.


With best wishes

Neil Graham FRACP, FRCP
Executive Director
CLL Advocates NZ