Friends of CLL Advocates NZ

This month is Blood Cancer Awareness Month, so it was a good opportunity to reflect on collaboration, networking, and resource sharing between CLL Advocates New Zealand and other blood cancer patient support groups, which like us, are working to better understand and treat these disorders, and support those with them.

A recent and significant example of this is a current, and near complete, project of launching our ‘CLL Guide for Patients’ booklet. We have worked with and drawn upon the resources of Leukaemia Care, a national UK blood cancer support charity, to adapt their patient booklet for a New Zealand CLL setting. Within the next month CLLANZ will be launching this CLL patient guide. Leukaemia and Blood Cancer NZ (LBC) will also be launching an updated version of their own CLL booklet.

Education and learning are a major part of the way forward in your CLL journey, so I encourage you to access a copy of our booklet, which will be available in both hard copy and as a PDF download on our website. I’m sure you will find it an informative resource.

A lot of work has gone into the CLLANZ booklet, and I would like to thank Dr Gillian Corbett, Catherine Isaac, and Heather Phillips for their great work in putting the document together.

Following on from education and learning, the CLLANZ inaugural patient seminar is this coming month. Three of NZ’s experts on CLL will speak, followed by a panel discussion and questions. This is a joint event with LBC, at the LBC headquarters in Auckland, or on Zoom from anywhere, to be held on Wednesday 14 October. Registration and details can be found on our website here.

In support of other CLL patient support groups, I want to remind you of the resources and networking available globally including groups such as PatientPower and HealthUnlocked. These websites have a lot of useful information and their patient networks, while in a global setting, are very active. You can join the HealthUnlocked global community here, which boasts just under 16,000 members, and access the PatientPower CLL online events here.

There are also regular teleconferences, and other educational activities, which we have now started listing on our website here in a new events section. Many of these events are international webinars held at difficult times of the day for most of us here in New Zealand. So, we are working to access recordings of these to share with you to watch on-demand.

Another CLL group was also recently formed – Doctors with CLL, which I have joined. I will keep you posted on developments here. The umbrella organisation is CLLAN (CLL Advocates Network), based in Europe, and the organisers of the conference I attended in Edinburgh a year ago. CLLAN coordinates the activities of these groups, and there is a lot of information on their website.

There are a number of other activities also underway that I have shared recently, and which you hopefully you have in your diaries:

• Survey on participation in drug trials.
• Dr Karen Oldfield’s PhD research project questionnaire on medical marijuana use in NZ.
• Shared experiences within our group, of second malignancies that they have had in addition to their CLL.

Thank you to all of you who have been posting and engaging with material on our Private Facebook Group. Engagement from patients and supporters helps others feel confident about sharing their own stories, struggles and questions, so I encourage you to please use this platform to share resources, ask questions and comment and engage with one another. This activity will go on to help us grow the group.

Finally, the general election is this coming month. An important issue for CLL patients is funding of medications. I encourage you to look at the health policies of the significant parties and put attention on their position on Pharmac funding. A good website to look at all parties and their policies all at once is www.policy.nz. You can link directly to the health funding policies here.

Best wishes

Neil Graham

Greetings

Research is a critical part of understanding diseases and their treatment. As set out in our Trust Deed, a key objective for CLL Advocates NZ is to ‘promote and support NZ-based research on CLL, including the value and importance of developing and participating in clinical trials, and improving the quality of NZ data on CLL. In pursuit of this objective we’re developing or supporting a number of initiatives:

• Clinical trials in NZ. You can find information on our website about ClinTrial Refer New Zealand. If you’re interested in keeping up to date with trials of CLL treatments in NZ, you can download the free app supported by HSANZ (Haematology Society of Australia and NZ) here. A number of New Zealanders have been enrolled in trials, often gaining access to unfunded medications, including “last resort” treatment options for advanced disease. There are numerous such trials actively recruiting as I write. One is Rob Weinkove’s work at the Malaghan Institute in Wellington, on CAR – T cell therapy. Trials of Zanubrutinib vs Ibrutinib  are also recruiting in New Zealand.
• Second malignancies in CLL. We have proposed a summer studentship/research grant in the Bay of Plenty on this topic. Second malignancies are one of the commonest causes of death in CLL. They include Richter’s Syndrome and skin cancers, including melanoma. The project should start at the end of 2020. Having been a researcher in such studies myself, I know that patient involvement in research projects often significantly increases their own understanding of the disease, as they often involve frequent contact with health professionals and present good opportunities to talk about CLL with them.
• A PhD research study on the use of cannabis as a medicine for cancer patients. Dr Karen Oldfield is a PhD candidate at Victoria University of Wellington and a Senior Clinical Research Fellow at the Medical Research Institute of New Zealand, who is looking at the use of cannabis as a medicine in NZ. She’s inviting cancer patients to take part in a 5-10 minute online survey about their thoughts on this topic. All information collected will be treated as confidential. This is a valuable research project, as well as a way of fostering links between CLL patients and NZ research groups, and I warmly encourage you to take part. If you’re interested in helping with this research, go to this link on our website.

Finally, do remember the CLL forum we are having online and live at LBC headquarters on 14 October, 5.30 – 7.00pm. Invitations and details will be coming out shortly.

Best wishes

Neil Graham

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

Welcome to our first CLL Advocates newsletter. Like many organisations, we weren’t able to accomplish very much over the lockdown period. We did, however, manage a Trustees’ teleconference to shape up our strategy for the next 12 months. One of the proposals made at that meeting was a monthly newsletter, so here is the first edition.

A huge number of lay and medical articles have been written about the COVID pandemic, and, as you may have seen on our website, we’ve published a number relevant to people living with CLL. See them here. One of particular interest was a consensus statement by Australasian haematologists on management of blood cancers in the COVID pandemic (published in May’s Internal Medicine Journal).  It noted that, with a mean age of diagnosis of about 70 years, CLL patients are already likely to be in a high-risk group simply because of age. Advice specifically directed to CLL patients was:

• to delay planned therapy where possible
• to consider using oral agents over IV medications so as to avoid exposure to higher risk environments such as hospital chemotherapy units, for treatment of both initial therapy, and for relapsed/refractory disease (see our recent letter to Pharmac on this matter).

New Zealand has done extraordinarily well at this stage to contain the virus, though it should be noted that vaccination, if successfully developed, may present further challenges for CLL patients.

The CLLANZ Trustees’ meeting agreed that information/education initiatives on CLL should be high on our priority list. In this regard, a review of the current management of CLL by Dr Gillian Corbett, haematologist and trustee, has been published on our website. A detailed CLL patient information booklet is also now close to sign-off and will be published shortly.

In October this year we will be staging a half day or evening combined meeting/seminar on CLL in NZ with the Leukaemia & Blood Cancer (LBC) group, with leading NZ CLL specialists.  This will be ‘in person’ in Auckland and also online on Zoom so that people from around the country can join in the discussion and if desired put questions to the speakers.  Details will follow soon.

To ensure we reach as many people as possible who have an interest in CLL, we encourage you to become a ‘friend’ of CLL Advocates NZ – by signing up to our newsletter here and/or joining our private Facebook group. You can apply to join the group here.

More details of anticipated activities will follow in subsequent newsletters.

Meanwhile, now that we have passed the winter solstice, and are becoming adjusted to the new ‘normal’, stay well, physically, mentally and spiritually. And please remember that as well as our advocacy role, we want to be a source of knowledge and support for New Zealanders living with CLL, and their families and supporters. To help us achieve this we would welcome and appreciate your feedback, and your thoughts on how we can best achieve our mission.

With best wishes

Neil Graham FRACP, FRCP
Executive Director
CLL Advocates NZ