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

trustees@clladvocates.nz


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

trustees@clladvocates.nz


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.


Neil Graham

CLL Advocates November Newsletter

November Newsletter - Neil Graham

Neil Graham video

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

info@clladvocates.nz

https://clladvocates.nz/

 

 

 


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:

  1. Newsletter

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.

  1. Private Facebook Group

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.

  1. Our website

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?

  1. 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?

  1. Patient stories

We would really like to expand this section. Please consider telling us yours, which you are welcome to do anonymously.

  1. Patient Booklet

Have you read it and do you find it useful?

  1. 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?

  1. 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.

  1. 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?

  1. 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


CLL Advocates Newsletter Issue 11

CLL Advocates Newsletter Issue 11

Dear Friends of CLLANZ

Skin infection (cellulitis) and CLL – a cautionary tale

Cellulitis is an infection of the skin, most commonly of the legs. It is usually due to bacteria. It commonly arises when the integrity of the skin is breached by a penetrating injury, often in the context of a pre-existing condition, such as diabetes, and conditions where immunity is impaired, such as CLL.

Cellulitis is the second most common primary site causing severe infection in patients with CLL (lower respiratory tract infections are the most common). It is often associated with sepsis/septicemia; when this happens, mortality is about 25% one month on from the episode of cellulitis. So awareness of what cellulitis is, and prompt antibiotic treatment thereof can save lives.

Professionally and theoretically, I have always been concerned about the risks of cellulitis, but in practice I’ve always led a physically active lifestyle, acquiring numerous skin injuries in the process. So it’s perhaps surprising that I hadn’t ever got cellulitis.

That all changed recently, when I had a penetrating injury of my left leg by a stick. Twelve hours later, I awoke in the night feeling very unwell, with a red, swollen, and painful leg. I was admitted to hospital for five days of intravenous antibiotics (blood cultures were positive for E. coli), with a good response, and was sent home on oral antibiotics.

About a week later, the infection recurred, despite oral antibiotics, and I again felt very unwell. I was readmitted to hospital, the first few days of this period being in ICU/HDU because of my level of unwellness. Blood cultures were again positive for E. coli. This time, I was an inpatient for a total of fifteen days; IV antibiotics for all that time, then a further week of IV antibiotics as an outpatient, after discharge. This seems to have done the trick, and I am currently back to where I was pre-leg injury, health-wise.

So, for those with CLL, please look after your skin, particularly on your legs. Wear gumboots and other protective clothing when in the outdoors, seek prompt medical advice/treatment for any skin injuries, and keep a careful eye on such injuries. Sepsis can be serious/fatal quite quickly.

I for one have certainly adopted a change in approach to looking after my skin as a consequence of this episode.

Best wishes

Neil Graham