COVID-19 information for patients and whānau with cancer.
This link here: Te Aho o Te Kahu – Cancer during COVID-19 contains information for patients and whānau with cancer. Cancer treatment continues at all phases of the Ministry of Health’s Omicron Response Plan.
Pharmac Review Final Report – Update
In a radio interview today, Health Minister Andrew Little said the final Pharmac Review report will be publicised “in a matter of a few weeks.”
The Pharmac Review panel was expected to hand over the final report to Minister Little by 28 February 2022 – he received it last week.
Click below to listen to the interview on 95bFM The Wire. Fast forward the audio recording at the bottom of the page to approximately 10 minutes to hear Andrew Little speak about the report.
The Wire with Joe and Emilia: March 10, 2022 | 95bFM
CLL Advocates Network´s March Newsletter
The CLL Advocates Network´s latest newsletter (March edition) where the first article is on the “International COVID-19 Blood Cancer Coalition" (ICBCC).
You can access the newsletter HERE.
There is also a page with ICBCC Success Stories and Access News.
In this section you will find a list of success stories that have been reported to the ICBCC following the launch of the International COVID-19 Blood Cancer Coalition´s (ICBCC) Joint Patient Impact Statement on 21 February 2022.
Let me take the opportunity to remind you of our next Coalition Update Meeting which is taking place this Thursday 10 March from 18:00-19:30 CET / 5:00-6:30 GMT.
Here is the Zoom link for those who wish to join:
Join Zoom Meeting
https://us06web.zoom.us/j/88436813708?pwd=QThBcjdYVWs4VnBPYnhxclNxZlZBUT09
Meeting ID: 884 3681 3708
Passcode: 669124
On behalf of: Nicole Schroeter
International COVID-19 Blood Cancer Coalition (ICBCC) Secretariat
Endorsers of the ICBCC Patient Impact Statement
Last Thursday 24 February the ICBCC Policy Strategy Working Group met to discuss on the Policy Strategy to address the specific impact of the pandemic on immunocompromised blood cancer patients (both acute and chronic) in a workshop-style setting. The meeting was facilitated by our partner Patvocates.
During the 2 hour workshop the group managed to define the actionable objectives from the impact statement and define the primary stakeholders and the level of lobbying needed (international/country level) for each of the objectives. In order to finalise the policy strategy and prioritise the creation of the tools and with the aim of eliciting a broad representative sample, we want to ask all statement endorsers to please vote their top 5 priorities when it comes to objectives. You can do this by adding votes in the Online Tool Groupmap which you can access via the following link: https://join.groupmap.com/413-EC5-D36. Please submit your votes by end of business Thursday 3rd of March.
As final step, we ask you as well to add suggestions on which tools you would consider most useful for you for each of the actions (template letters, social media images, flyers, etc.). To do so, you can add comments in each of the boxes.
Your input will help us provide tools that really suit your needs.
We thank you in advance for your speedy response to the above request!
On behalf of the CLLAN Steering Committee and the International COVID-19 Blood Cancer Coalition" (ICBCC)
CLLANZ trustees present to Pae Ora Committee
On 8 February CLL Advocates trustees appeared before the Parliamentary Select Committee that is considering the draft Pae Ora legislation that will establish the new health system. Watch it here and see our full submission here
Which haematology patients are at higher risk of COVID-19?’
Watch this excellent presentation by Dr Rob Weinkove of the Malaghan Institute, courtesy of Leukaemia & Blood Cancer NZ, on ‘COVID-19 and haematology patients - protecting yourself in 2022’
https://youtu.be/wSet-9sB-VM
Launch of the Patient Impact Statement of the International COVID-19 Blood Cancer Coalition (ICBCC)
The coalition has prepared the Statement for use in different countries to aid when advocating for the provision of anti-COVID-19 treatment and care for immunocompromised or immunosuppressed (IC/IS) blood cancer patients. The Statement has been endorsed by multiple networks and national organisations of the global patient advocacy community as well as renowned medical societies and representatives from the global clinical community.
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
SARS-CoV-2 IgG Serology Testing
SARS-CoV-2 IgG Serology Testing
Please note effective 14th June, SARS-CoV-2 IgG serology testing will be available at Pathlab.
This assay can potentially be used to assess vaccine response and to detect previous infection.
This is a quantitative IgG assay performed on the Abbott Alinity platform. However, as it is still not clear exactly what level of antibodies confers reliable protection against COVID-19 post-vaccination, we will report positive and negative IgG results in a qualitative manner in the first instance, along with qualifying comments as below:
Positive “IgG antibodies to SARS-CoV-2 spike protein DETECTED. This result indicates prior exposure to SARS-CoV-2 or vaccination. Antibody levels peak approximately 2 weeks after infection or second dose of vaccine, with variable duration of measurable antibody. The presence of antibodies is likely to be associated with current protection from symptomatic COVID-19 infection, but a true serological correlate of protection has not yet been established.”
Negative “IgG antibodies to SARS-CoV-2 NOT detected. A proportion of mild cases of COVID-19 do not produce durable antibodies. The presence of antibodies is likely to be associated with current protection from symptomatic COVID-19 infection, but a true serological correlate of protection has not yet been established. Absence of measurable antibodies after vaccination does not necessarily imply lack of immunity.” Please ensure relevant clinical history and COVID-19 vaccination status (including date of vaccination) is on the request form.
Please note – this assay is not currently funded so the patient will be charged.
This test must be requested by a clinician and is not currently available by self-request.