International COVID-19 Blood Cancer Coalition (ICBCC) - Patient Impact Statement and Recommendations
Protecting immunocompromised blood cancer patients during the COVID-19 pandemic
The coalition has prepared a Joint Patient Impact 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 to date been endorsed by networks and national organisations of the global patient advocacy community as well as renowned medical societies and representatives from the global clinical community .
There is a total of 71 endorsers to date including CLL Advocates NZ, Dr Gillian Corbett.
Pharmac Review Panel Interim Report
Decision on access criteria for oral COVID-19 treatments:
The Access Criteria for the oral antiviral COVID-19 treatments, nirmatrelvir with ritonavir (Paxlovid) and molnupiravir (Lagevrio) has been announced.
These Access Criteria have been developed with the advice of our clinical expert advisors. Supply of the oral treatments will be arriving throughout 2022 and the criteria have been designed to help support prescribers to target available supply to those most in need and most likely to benefit. The evidence continues to change quickly in the COVID-19 treatment space and we will continue to review the criteria and consider any changes as required.
Approvals are valid for patients where the prescribing clinician confirms the patient meets the following criteria and has endorsed the prescription accordingly.
For more information please click on this link: https://pharmac.govt.nz/news-and-resources/consultations-and-decisions/2022-03-31-decision-on-access-criteria-for-two-oral-covid-19-treatments
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.
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)
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.
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.
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
'I am screwed if it comes back' Experts concerned by Covid's hidden impact on blood cancer treatments
'I am screwed if it comes back': Experts concerned by Covid's hidden impact on blood cancer treatments
This article was originally posted on Stuff
Around 21,000 Kiwis are living with blood cancer. Symptoms can be difficult to recognise, and experts worry that some people aren’t getting diagnosed as our health system tackles the impact of Covid-19. Hayley McLarin investigates.
Neil Brownlie has beaten blood cancer three times in a decade.
The former electrician from Dunedin has overcome Hodgkin lymphoma, Burkitt lymphoma and acute myeloid lymphoma. Doctors tell him they haven’t known any other patient to have three different blood cancers.
But at 37, he’s had so much chemotherapy he’s been told he cannot afford to get cancer again, and his body won’t withstand any more chemo.
Who will be eligible for a third Covid jab in the UK?
Who will be eligible for a third Covid jab in the UK?
This article was originally published on The Guardian
Half a million people in the UK who have severely weakened immune systems are to be offered third shots of Covid vaccines in an effort to improve their protection against the disease.
So what is the advice, who is eligible, and where does this leave plans for an autumn booster programme?
What is the new advice on vaccines?
The government’s independent vaccine advisers, the Joint Committee on Vaccination and Immunisation (JCVI), has recommended a third shot of Covid vaccine for people with severely weakened immune systems. The committee estimates 400,000 to 500,000 patients aged 12 and over are eligible in the UK.