CLL Advocates June Newsletter
Dear Friends of CLL Advocates
We have a lot to report on and a lot to get on with!
CLL Focus groups
We’re pleased to share an overview of key findings from the CLL patient focus group discussions we held in December 2022 (Focus Groups Research – CLL Advocates NZ)
It highlights the major themes and issues that emerged from the research and sets out priority areas of focus for CLLANZ. Get in touch if you’d like to help with these! Meanwhile we’re working with the facilitator of the focus groups to follow up on her recommendation that we survey a wider group of patients and carers.
Local support groups for CLL patients
Another action arising from the focus groups is the need for local support groups.
Are you interested in joining or starting one in your region?
Please contact Diane Ward: dianew564@gmail.com to find out more about this initiative.
The FixRx Buyers Club
We’re currently checking out this buyers’ club that helps patients across the world access authentic medications at affordable cost. If you have any experience of this or are interested in the concept let us know: FixRx Buyers Club
‘Fabulous ladies in the same boat’
Read this great story about three women who met online through being in the same boat - living with CLL. Despite different ages and lives, the three have supported each and become great friends while sharing and navigating the challenges of CLL: Fabulous ladies in the same boat
CLL Advocates Give a Little page
Please help support our mission. No matter how small, your donation will help us advocate for better treatments for CLL and improve the lives of those living with this disease.
Thanks to those who’ve already made donations: CLL Advocates Give a Little Page
Frequently asked questions
A recent update to the "About CLL" section on the webpage includes section that answers common questions about CLL: Frequently asked questions
It also includes a list of questions patients can ask their doctors to better understand their diagnosis and treatment options. Questions for your doctor
Please send any feedback to trustees@clladvocates.org
Best wishes
The Trustees
CLL Advocates NZ
CLL Advocates June Newsletter
24 June 2022
Our Thoughts at Matariki
Mānawatia a Matariki
We feel it’s appropriate on this special day to remember and celebrate the life of the founder of CLLANZ, Dr Neil Graham. Neil was a very generous, energetic, and compassionate human being who gave his time freely to help improve the lives of New Zealanders living with CLL. His work helped create a ‘community’ of CLL patients, through his personal engagement with patients, creation of the ongoing private CLL Advocates Facebook Group, and production of the first dedicated CLL Patient Booklet for New Zealanders. With a relentless focus on advocating for access to CLL treatments, Neil also raised the profile and understanding of CLL among politicians, Pharmac officials and other policy decision makers. He played a vital role in gaining funding for venetoclax.
Looking to the future, as is also appropriate on this day, the fight for better treatments goes on. In particular, after all these years of waiting, we’d like to see funding for ibrutinib for patients in need of it. But at this stage there’s no sign of any progress on that. While we welcome the release (finally!) of the Pharmac Review Panel report, we’re not greatly confident that it will lead to real change in the nature, speed, and transparency of Pharmac’s decision-making processes. After a three-month delay, releasing the report on the day Prime Minister Ardern met President Joe Biden suggests the Government may not have wanted it to get much attention! We have noted a change in Pharmac’s language but are keen to see some meaningful change in their processes.
We’re very pleased to say that CLLANZ Trustee Dr Gillian Corbett (see her bio Dr Gillian Corbett) has agreed to take on the role of Medical Director of CLLANZ.
You can contact her at: trustees@clladvocates.nz
Gillian will be able to lead or advise on our advocacy activities, but we are still looking for help to progress the priorities we outlined in our last newsletter. Please do get in touch with us if you can help in any way.
We hope you’re having a happy Matariki with family and friends, and we send our warmest thoughts and wishes to Neil Graham’s family and our thanks for all he did for New Zealanders living with CLL.
CLLANZ Trustees
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:
- Access to new treatments, notably BTK inhibitors, for relapsed CLL
- Reform of first line therapy
- Equitable access to clinical trials of unfunded CLL treatments
- The availability in NZ of testing to identify the IgVH mutation
- Prevention and management of infections in CLL patients, and
- 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
CLL Advocates December Newsletter
December Newsletter - Pharmac Review Panel's interim report
Dear Friends
As you probably noted the interim report of the Pharmac Review Panel was released by Hon Andrew Little on 2 December.
It is a damning report, with the Panel noting that it could not make a meaningful analysis of Pharmac’s performance as it ‘zealously guards information’ and has a ‘fortress mentality’.
It states for example, that “We are unable to see and measure the links between inputs, impacts, outcomes, and the long-term objective of achieving the best health outcomes possible from its budget.”
It provides the following summary of Pharmac’s stakeholder engagement and an initial assessment of its decision-making processes:
- “Pharmac is underperforming in helping to remove inequitable health outcomes
- Its prioritisation approach appears to disadvantage Māori, Pacific people, disabled people and those with rare disorders
- Te Tiriti o Waitangi principles are largely unseen in decision-making processes
- There may be an excessive focus on containing costs – and a concern the cost-saving model may not be the right one to meet future health needs
- Decision making is opaque and is perceived as being slow
- Engagement with consumers and patient advocacy groups needs to be more meaningful
- Convoluted procurement processes put off pharmaceutical companies
- A perception New Zealand is falling behind other developed countries”
CLLANZ made a submission to the Panel which was very much in tune with these findings, and we were pleased to see an acknowledgement in a message in the report from the Panel’s Chair of the specific contribution made by the late Dr Neil Graham.
The final report, which will include recommendations, will be received by the Minister on 28 February, and released some time after that.
Meanwhile the Government’s Pae Ora Legislation Select Committee is considering the Pae Ora Bill that establishes the new health system structure. This bill includes Pharmac with its statutory objectives and functions quite unchanged so we have again submitted on the need to amend these and also to wait for the final report of the Review Panel before advancing this part of the legislation. See our submission here.
This has been a difficult year for CLLANZ with a very sad ending, but we are doing our best to maintain our advocacy for New Zealanders living with CLL and we look forward to continuing to do so.
We wish you the very best for a safe and peaceful Christmas and New Year.
CLL Advocates November Newsletter
November Newsletter - Neil Graham
Dear Friends of CLL Advocates NZ
We were deeply saddened to report to you last month that our Founder and Executive Director Dr Neil Graham passed away on November 15. Neil was the driving force and inspiring leader behind CLL Advocates and gave an enormous amount of his time and professional expertise to establishing the organisation and advocating for the interests of CLL patients. We miss him greatly.
As a physician and CLL patient himself, Neil gave a great deal of personal time to talking with and meeting CLL patients who had made contact through the private Facebook page, especially people who had been newly diagnosed. We know from their feedback that this was greatly appreciated. Neil also maintained a persistent and consistent focus on getting better treatments for CLL patients, regularly engaging with Pharmac officials, petitioning and making submissions to Parliament, appearing before the Health Committee and the Pharmac Review Panel and engaging with media.
Neil felt strongly about improving public understanding of CLL and providing better information for people living with it, and was able to put together a dedicated CLL patient information booklet through forging a very productive collaboration with a UK blood cancer advocacy group. In the same vein he developed a relationship with the international CLL patient group CLL Advocates Network resulting in our organisation becoming one of the first 9 members of what is now a 34 member country network sharing information and resources on CLL.
You may recall in his last (October) newsletter Neil asked for feedback on our activities and in particular any offers of help with any of our work. If you are able to volunteer any time even for small tasks, this would be greatly appreciated, especially as we move into this new era, without Neil at the helm.
You can contact us at info@clladvocates.nz.
With best wishes
CLL Advocates Trustees
Request for Feedback - October Newsletter
October Newsletter - Request for Feedback
Dear Friends,
Our monthly newsletter has now been going for a year and a half, and I’d like to hear back from you on what you think of it, and how you think we could improve it and make it as useful as possible. I’d also like to have your feedback on some of our other activities, and whether they’ve been useful to you, and your thoughts on some questions we are currently working on. In particular, I’d really appreciate an email at Neil@clladvocates.nz on all or any of the following:
Choice of topics so far, format, and topics you would like addressed in future editions. Suggestions for expanding the readership, and anything you may be able to contribute to this.
We are closing in on the “100” milestone, but there are at least 2,000 NZers with the condition, many of whom would benefit from what CLLANZ has to offer them, as would their friends and families. Please think about how you could assist with this.
Are there comments/suggestions regarding our website – content, usefulness, additional material you would like to see? How can we extend subscribers and visitors to the site?
- Research
We have another summer studentship getting underway this coming summer, a study on how many NZ CLL patients are taking ibrutinib, and questions about access, funding, response monitoring etc. This is the second we have undertaken, with funding from the Bay of Plenty Medical Research Trust. Do you have ideas on research projects we could consider for next year’s scholarship?
We would really like to expand this section. Please consider telling us yours, which you are welcome to do anonymously.
Have you read it and do you find it useful?
- Focus groups
Would you be interested in taking part in an online focus groups to discuss what would be the most useful support we could provide for you as a CLL patient or family/friend. CLL related questions?
- Clinician-led webinars/ Q&A or small group discussion sessions
Would these be of interest? I know that some informal groups that have been formed through connections on our Facebook page.
- Advocacy activities
Hopefully you’re aware of our various advocacy activities. These have included significant engagement with Ministers, Members of Parliament, the Health Select Committee, Pharmac and other relevant government health agencies, the Pharmac Review Panel, other patient advocacy groups, submissions, seminars, presentations, petitions and marches. Do you think this work is useful? Are you interested in taking part?
- Succession planning & volunteer help
Recently, two of the key CLLANZ drivers became unwell at the same time, and there was a period where CLLANZ ground to a standstill. If we had some volunteers willing to step up to temporarily covering roles at these times, that would be helpful.
On that note I’d like to record that my own health has deteriorated significantly, and I will need to pass the CLLANZ baton to someone willing and in a position to take this on. If you’re interested or have a suggestion for someone suitable, please do email me at Neil@clladvocates.nz
Thank you for your support and encouragement over the past few years.
Best wishes,
Neil Graham
CLLANZ Newsletter September 2021 - Learn the latest international developments in CLL treatments
CLLANZ Newsletter September 2021 - Learn the latest international developments in CLL treatments
Dear Friends,
I hope you’re well.
Learn the latest international developments in CLL treatments
One of the few positives that have come out of the Covid pandemic is the ability to attend high value international conferences without having to travel or pay! The international CLL Advocates Network (CLLAN) of which we are a member is holding its annual CLL Horizons Conference online on 5 – 7 November.
This will be a great multidimensional update on CLL, with contributions from leading international CLL specialists and researchers, patients and many other individuals and groups. I strongly recommend that you register for this year’s one. I attended and presented at their Edinburgh conference in 2019 and am also on a panel on this one. We’re not sure yet how many delegates we can have attend free of charge, but will clarify this and let you know.
Details of the programme and how to register, are all here on our website, and you can send any questions to info@clladvocates.net
Contribute to a global leukaemia patient experience Survey
Another collaborative project CLLAN is supporting is a global survey to help us understand the key issues, experiences and unmet needs for leukaemia patients, covering CLL, AML, ALL and CML. This is a very valuable initiative and I warmly encourage you to take the 20 minutes required to complete it.
You can find more details about it here on our website and you can access the survey here.
Meanwhile, where is the Pharmac Review Panel’s interim report??
On a final, but important note, the preliminary report of the Independent Pharmac Review Panel which was due on 20 August, is still not available over a month later. The “delay” has been attributed to lockdown (which began on August 18). This is not an adequate excuse for such an important document, which many clinicians and patient advocacy groups, including CLLANZ, went to great lengths and effort to contribute to, both in appearing before the committee and putting in very substantial submissions. For voluntary, patient-based organisations to produce and deliver this material within the very short time frame set by the Panel, was in itself a significant effort.
Somewhat ironically, Pharmac’s lack of transparency and timeliness around their processes for considering urgently needed, currently unfunded, life-saving medications, was one of the key issues raised by submitters. Failure on the part of the panel to deliver its report on time without a reasonable excuse is simply not good enough.
Best wishes
Neil Graham
Neil Graham
Update on treatment of Covid-19 in CLL patients
CLLANZ Newsletter August 2021 - Update on treatment of Covid-19 in CLL patients
It is well recognised that the immune response to Covid 19 infection of individuals with CLL is markedly poorer than that of the general population, with associated increased hospitalisation rates, and increased mortality from the disease. It is thought that about 40% of patients with CLL do not develop an adequate antibody response to Covid 19 infection, or to Covid 19 vaccinations.
For this reason we can be much encouraged by the major recent therapeutic development of a monoclonal antibody to treat or reduce the risk of developing acute Covid 19 infection.
This antibody is known as Ronapreve in the UK and REGEN-COV in the US, and is a combination of two antibodies, casirivimab and imdevimab. It is produced by Regeneron Pharmaceuticals with Roche. Roche is the NZ distributor.
It can be given to at-risk patients as a single dose, IV or subcutaneously after any exposure to a Covid 19 infected individual or with the development of Covid 19 symptoms, in particular for those with a reduced/absent Covid 19 antibody response such as CLL patients. It has been shown to reduce dramatically the rates and duration of the clinical illness (80%), hospitalisation rates (70%), and mortality (25%).
Anyone with CLL who gets Covid 19 symptoms, or has close contact with someone with Covid 19 infection, should immediately self-isolate and call Healthline. But they should also ask the medical staff making their assessment about consideration of this monoclonal antibody as treatment for their condition.
Other monoclonal antibodies are also in the pipeline in relation to Covid 19, including tocilizumab, currently being considered by Pharmac for funding for cases of severe Covid 19 pneumonia.
There are additional aspects of Covid 19 infection risk-reduction that should also be part of all CLL patients’ plans/behaviour. Vaccination is of course the big one, and is central to prevention and reduction in severity of Covid 19 infection. There is mounting evidence that CLL patients should have three vaccination shots, the third being a ‘booster’, which is believed to improve the vaccine response especially in the subgroup with a low antibody response.
I’m sure you will be more than familiar with the other now routine infection-prevention measures such as wearing masks, avoiding crowds and poorly ventilated areas, regular hand washing and social distancing.
Stay safe!
With best wishes
Neil Graham
Newsletter #13: Submission to Panel Reviewing Pharmac
Newsletter #13: Submission to Panel reviewing Pharmac
Dear Friends
Our major activity over the past month has been engaging with the independent Panel set up by the Government to review Pharmac. In addition to preparing a submission to the Panel, we were able to meet and present our submission to them in person, and we also attended a workshop for patient advocacy groups. See our submission here.
Fellow trustee Dr Ben Schrader, CLL specialist and Malahgan Institute Clinical Director Dr Rob Weinkove and I presented our case to the Panel, and together with the ensuing dialogue we felt it was a valuable and hopefully productive session. The workshop which was attended by all but one member of the Panel and around 16 patient advocacy groups, demonstrated a strong uniformity of depth and breadth of concerns by attendees on the failings of Pharmac regarding funding applications for medical treatment.
The key points we made there and in our submission were as follows:
- Dialogue between Pharmac and agencies making applications for funding is characterised by long delays, lack of feedback as to where a therapy is at in the funding consideration process, and lack of transparency. A much more open approach to dialogue is required.
- There are inefficiencies and blurred responsibilities in the structure and function of Pharmac, eg assessment and procurement need to be done by separate organisations.
- Funding is a major issue, both absolute budget, and the percentage of health budget NZ spends on medications compared to other OECD countries.
- Opinions of NZ consultants and specialist societies are rejected, as are international therapeutic guidelines put together by world authorities. There are examples, too, of the medical literature opinion being rejected as inadequate.
- There are examples of medications being widely available in other countries that are life-saving, and which Pharmac rejects funding thereof. This has resulted in people leaving NZ to get access to these life-saving medications. Case histories of such funding applications to Pharmac are available.
- Lack of funded international standard-of-care treatments in NZ also means we have very few clinical trials, a loss both for patients and clinicians.
- There are mechanisms for assessing how efficacious a drug is eg QALY, which should be a component of Pharmac’s decision process. Another component of non-funding of therapies is that those who can fund medications survive, and those who can’t don’t.
- Several attendees commented on “hidden” costs of treatment not being considered by Pharmac, such as the need to attend a tertiary hospital eg Day Stay Unit for treatment, which might involve long travel times for some people, the need to curtail employment, and the extra challenges that the elderly, disabled, and minorities such as Māori and rural living people face in accessing health care. Cancer Care at the Crossroads is an expansive guide to how oncological services in NZ should be.
- The consequences of successful treatment, such as returning to work as a fully functional member of society needs also to be factored into costs/savings.
- There are international models that function better re drug funding than Pharmac that Pharmac could transition into eg UK (NICE), Canada (CADTH),and Australia (PBAC).
- There have been major improvements in treatment options in oncology particularly over the last decade plus, but Pharmac’s response to these, often expensive, therapies has been anachronistic, and people are dying unnecessarily as a consequence.
- Vacillation has been a feature of serial decisions by Pharmac re grading of funding recommendations for medications. For an example of this see the final page of the submission on the history of Pharmac committee decisions over the past 6 years regarding ibrutinib.
- “Deeply frustrating“ has been an expression used to describe the interaction between funding application agencies and Pharmac.
The Review Panel will present its interim report to the Government on 16 August. We are of course awaiting this with great interest, and I will report to you again as soon as we’ve had an opportunity to digest it.
Best wishes
Neil Graham
CLL Advocates Newsletter Issue 12
CLL Advocates Newsletter Issue 12
Dear Friends of CLLANZ
Covid-19 and CLL prevention and treatment – an update.
There is still a lot not known about this disease, but knowledge of it increases daily, and we will know a lot more about what to do to control the disease in coming months.
People who have CLL, and other leukaemias and blood cancers, are much more susceptible to the disease, have more severe disease, are more likely to be hospitalised when they get it, and are more likely to succumb to it than people with normal immune function.
Get vaccinated, if you have CLL.
Vaccination is safer than not being vaccinated – it reduces the severity of the disease, and the mortality rate, even though the vaccination response is reduced (it seems variably and complexly so) in people with CLL.
Herd immunity, nationally and globally, mainly because of vaccination, remains the mainstay of keeping people with CLL safe.
Preventative measures, such as avoiding crowds, social distancing, wearing protective gear such as masks, and washing hands, all remain important measures in preventing disease transmission.
And if you do get it, there seem to be increasingly recognised therapeutic options that can help you. For example, dexamethasone and budesonide save lives, and ibrutinib may reduce the disease severity.
Conversely, some treatments cause immunosuppression, and so increased vulnerability to the disease.
At the moment, in NZ, we have very low rates of the disease, and minimal community transmission, so we’re in a good place to be for staying safe.
This might change if the delta variant becomes established here though – it is more infectious, more likely to need to be treated in hospital, and maybe more resistant to vaccination, especially in the context where a person has only had one dose.
So I hope you all stay well during the pandemic out there in CLL land.
Best wishes
Neil Graham