IWMF Roadmap Funding Project successfully completed – WMozzies reached the goal set.

New treatment for Waldenström’s macroglobulinemia now available

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.

In a first for the PBAC, BeiGene expects to enter a facilitated resolution pathway in order to seek a listing date for WM.

Access to Brukinsa

Whilst the PBAC is considering the PBS listing of Brukinsa, some patients may be able to access the product via their specialist. Please discuss access options with your doctor.

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

COVID-19 questions in WhiMSICAL Registry

WM Patients anywhere in the world can participate, whether or not they have been tested, or had the infection.. They can complete the Registry questionnaire, which now includes COVID-19 specific questions, To take part, you can login or register and consent at www.cart-wheel.org, and then answer the questions. Answers can be continually updated, so if you are tested later, you can enter the results of your COVID-19 test as soon as it is available and afterwards, return to update how COVID-19 impacted you. If you become unwell, you can have your close ones update your answers for you (with your login details). That way you will be helping researchers get the full picture of how severely COVID-19 impacts WM patients.

The COVID-19 question can be accessed at question 19 of the Questionnaire at www.cart-wheel.org . For those new to WhiMSICAL, please provide registration details (questions 1 and 2), Consent and enter “Waldenström’s Macroglobulinemia” as your diagnosis (question 3). All participants should complete the COVID-19 questions (question 19) and enter or update details of your treatment (question 9) and quality of life (questions 20 and 21). We also encourage you to enter or update details in other questions as we seek to provide big-data to describe the WM patient experience with WhiMSICAL. A valuable project you can complete in stages during your social distancing!

For further information on WhiMSICAL, click here (link), or contact whimsical@iwmf.com or phone Andrew Warden Mob.0408 303 718

Virtual Lecture on WM

The lecture on Waldenström’s Macroglobulinemia, featuring Dr. Ansell, Professor of Medicine in the Division of Hematology at the Mayo Clinic, Rochester, MN, is now available. WM topics covered include:

· Who needs treatment at presentation

· Treatment options for newly diagnosed and relapsed patients

To see Dr. Ansell’s lecture, available at The Leukemia & Lymphoma Society (LLS) website, click here.

LLS Virtual Lecture Programs offer a convenient opportunity to learn about the latest disease-specific information from medical experts. Dr. Ansell’s pre-recorded presentation on WM will be available to view for approximately 12 – 18 months. You can view the synchronized audio and slides, download the transcript, or request a hard copy of the transcript by contacting the Leukemia & Lymphoma Society at feedback@LLS.org (link sends e-mail).

Global Patient Survey

Lymphoma Coalition Patient Survey

Take the Survey www.lymphomacoalition.org/global-information/global-patient-survey/2018/survey

WhiMSICAL “Frequently Asked Questions” enhanced WhiMSICAL “Frequently Asked Questions” enhanced

WhiMSICAL “Frequently Asked Questions” enhanced

Following feedback from WhiMSICAL members, the “Frequently Asked Questions” at http://www.wmozzies.com.au/index.php/whimsical/whimsical-frequently-asked-questions/ has been enhanced with additional explanatory detail. Many screenshots have been included to assist in important areas such as getting started, consent, diagnosis, and pathology results.

For further information or assistance send email to: whimsical@iwmf.com

Please remember the cut-off for joining WhiMSICAL and updating details is in a week.

Act now so that your WM details are part of the WhiMSICAL submission to the ASH meeting in December.

New Website for WMozzies

New Website is being developed for WMozzies.

The release date is still being worked out.

If you would like to hear when it is launched join our mailing list via the Contact Page.

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 whimsical@iwmf.com.

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.