Advocacy

Letter to Parliamentary leaders re access to cancer treatments

WMozzies was amongst ten cancer organisations representing 500,000 Australians living with cancer in a letter to leaders of the major political parties. Each leader was asked to respond and endorse the Senate Community Affairs Committee’s recommendations regarding access to new, innovative and specialist cancer medicines: The following aspects were of particular interest:

Increased consumer involvement in all aspects of PBAC decision making and in any review of the registration and subsidisation processes
Improved flexibility in regulations around the access and analysis of data, particularly combined MBS and PBS data

Establishment of a National Register of Cancer Medicines to ensure we can make assessment of the value of all medicines

Leukaemia Foundation (LF) strongly supports WMozzies

Leukaemia Foundation (LF) strongly supports WMozzies’ efforts to focus on our specific concerns for access and funding for best available WM treatments.

Dr Anna Williamson head of LF advocacy has provided wide ranging coaching for WM advocacy. This has included WMozzies attendance at:

Cancer Drugs Alliance Stakeholder Canberra Forum held 26-27 March 2014 for patient groups, clinicians, academics, politicians, bureaucrats and the medicines industry. Key issues included:
Adequacy of Australian system for providing access to cancer medicines
Ways for the consumer voice to be heard effectively with regard to access to cancer medicines
Impact of the regulatory and reimbursement environments on clinical practice
Valuation of cancer medicines
Appropriate evidentiary requirements for cancer medicines
Health Economics in Cancer Research workshop on the PBAC submission process on 14-15 April 2014
Health Consumer Advocacy Workshop on Engagement, Advocacy and Alliances on 24-25 August 2014

WMozzies in launch of new cancer group ACCN

Senator O’Neill, Andrew Warden, Dan Tehan MP at ACCN Directory launch

On 26 November 2014 WMozzies attended the launch in Parliament House Canberra of the Who’s Who of 28 Australian Cancer Consumer Groups including WMozzies. This initiative of the newly formed Australian Cancer Consumer Network (ACCN) and led by Cancer Voices Australia was supported by the Co-chairs Parliamentarians Supporting Cancer Causes Dan Tehan MP and Senator Deborah O’Neill

WMozzies works with Cancer Drug Alliance

With the Cancer Drugs Alliance post forum activities WMozzies has participated in the working group for establishing a national chemotherapy registry and the consumer working group which made a submission in March 2015 to the Senate Enquiry on availability of new, innovative and specialist cancer drugs in Australia.

WMozzies also was signatory to Senate Enquiry by Rare Cancers Australia and Cancer Voices Australia. Individual submissions by WMozzies were also made to the Senate Enquiry.

FUND RAISING TARGET COMPLETED.

December 9, 2021December 9, 2021

Very excited to report that the $150,000 target has been achieved and the IWMF Roadmap Project will receive the funding as per their agreement with the Leukaemia Foundation. We are very grateful to all the people who donated and we can all be proud to be part of a project that looking very deep into WM and hopefully will lead to further & better treatments. We also wish to acknowledge the assistance of the Leukaemia Foundation in first of all entering into the agreement with the IWMF and helping us with the Donation Page. Should you wish to donate, you can still donate to assist WMozzies by clicking on the donate button on the home page.

New treatment for Waldenström’s macroglobulinemia now available

October 28, 2021October 28, 2021

A new treatment for Waldenström's macroglobulinemia (WM) has been approved by the Therapeutic Goods Administration for adult patients who have received at least one prior therapy, or in first line treatment for patients unsuitable for chemo-immunotherapy, and also for adult patients with mantle cell lymphoma. BRUKINSA (zanubrutinib) was developed by BeiGene, a global, science-driven biotechnology company focused on developing innovative and affordable medicines to improve treatment outcomes and access for patients worldwide. WMozzies was proud to be invited by the Pharmaceutical Benefits Advisory Committee (PBAC) to take part in a pilot program as consumer advocates in the BRUKINSA PBAC decision process. WM patients will have immediate free of charge access to BRUKINSA through a BeiGene sponsored Pre-Reimbursement Access Program until such time that WM is listed for reimbursement on the Pharmaceutical Benefits Scheme. In a first for the PBAC, BeiGene expects to enter a facilitated resolution pathway in order to seek a listing date for WM. What is BRUKINSA? BRUKINSA is a small molecule inhibitor of Bruton’s tyrosine kinase (BTK) discovered by BeiGene scientists that is currently being evaluated globally in a broad clinical program as a monotherapy and in combination with other therapies to treat various B-cell malignancies. Because new BTK is continuously synthesised, BRUKINSA was specifically designed to deliver complete and sustained inhibition of the BTK protein by optimising bioavailability, half-life, and selectivity. With differentiated pharmacokinetics compared to other approved BTK inhibitors, BRUKINSA has been demonstrated to inhibit the proliferation of malignant B cells within a number of disease relevant tissues. For more information, see Products | BeiGene

WhiMSICAL Registry’s important publication

June 16, 2021June 16, 2021

The WhiMSICAL Registry’s publication of patient-entered data in the prestigious medical journal, American Journal of Hematology, presents important research for all WM patients. It has added to the field of WM Research by capturing real world WM treatment and quality of life outcomes. Congratulations to all WM patients who have entered their data into the WhiMSICAL Registry, and now published at American Journal of Hematology ajh.26173. More Registry participants are needed to strengthen the results. A further submission is planned to the 2021 American Society of Hematology Conference. This is to include updated details from existing and from new participants received by the deadline of 12^th July. The WhiMSICAL Registry, built through a patient-clinician investigator partnership, is a global database for WM patients to enter their own data. Key findings include:

Longest time to next treatment after 1^st line therapy - in patients treated with bendamustine rituximab
Better quality of life in those on Bruton tyrosine kinase inhibitors compared to recent chemotherapy.

Over 450 patients from 19 countries contributed to this first global registry for WM. Highlights of the study so far include:

Little consistency in 1^st line therapy choice globally, with 46 different types of therapies given!
USA patients commence their 1^st therapy almost 3 times faster than the rest of the world.
1^st line bendamustine rituximab has outperformed the Bruton tyrosine kinase inhibitors (BTKi, e.g., ibrutinib, zanubrutinib) and rituximab alone in time to next treatment. The findings are preliminary, however, without exact matching of the groups. More participants, and longer follow-up of existing participants are needed to confirm these exciting preliminary results.
Patients on BTKi report better quality of life scores than those who recently received other treatments.

COVID-19 vaccines are now rolling out globally. WM patients may achieve impaired vaccine responses due to their condition and treatment. To help assess the impact of COVID on patients with WM, the WhiMSICAL Registry has included a question (at question 19) on COVID-19 testing, infection and vaccination. Please contribute to this important and urgent research question for WM patients. From anywhere in the world, you can join the WhiMSICAL Registry by registering and completing consent at www.cart-wheel.org, and then filling out the questionnaire. Some data is always better than no data. Your answers can, and are recommended to be, continually updated. Please note that it does not all need to be done in one sitting; you can enter as much (or as little) as you are able to provide each time to access the Registry. (Naturally, the more data that is collected, the better the outcomes for further research.) For those already participating in WhiMSICAL, thank you for contributing your patient voice to peer-reviewed research. Please continue to update your data at www.cart-wheel.org, making sure to complete the newly added COVID-19 questions and update any changes to your treatment (question 9) and quality of life (questions 20 and 21). We need your help to provide “big data” to increase the power of this research by increasing the number of participants. Together, we can help answer some important questions in WM research as we search for a cure. For further information on WhiMSICAL Registry, click here WhiMSICAL Registry and Frequently Asked Questions or contact [email protected].

WMozzies information flyer

September 13, 2017September 13, 2017

WMozzies information flyer

The new WMozzies flyer is now available. It provides information about WMozzies and the support services provided to Waldenström's Macroglobulinemia patients throughout Australia. It is produced in a 3 column double sided fold-out format as shown below.