Dear friends,

In the interest of prioritizing our precious volunteer time, which has been focused on the exhausting work of rebranding including our new website, we are writing you a quick December update email instead of our lengthy newsletter. This prompts us to ask if you may consider joining our amazing volunteer team. Please let us know the skills you are interested in using from home, and we shall match them with our needs - write to This email address is being protected from spambots. You need JavaScript enabled to view it.

Australian Retreat February 6-8, 2026: Importantly, there is still time for you to book your attendance at our “Dragon fest” weekend retreat. This is an opportunity for members to gather together in Australia and catch up with friends you only see on our Dragon Talks' screen.  We will dine in and out and spend time relaxing in the beautiful gardens rolling down to the waterside of the Mary McKillop Conference Centre, Kincumber, NSW. The invitation details and booking form are the third item in our last newsletter at September 2025 Newsletter

Help to get a new treatment for Lupus Nephritis Listed on the PBS. This condition is a serious complication to the autoimmune disease Lupus.  It damages the kidney and if untreated, can lead to kidney failure. Obinutuzumab is a biologic immune suppressant that has recently been proposed as a treatment for Lupus Nephritis. In March 2026 it is being considered by the Pharmaceutical Benefits Advisory Committee (PBAC) as to whether it will be listed on the Pharmaceutical Benefits Scheme (PBS). If approved, eligible patients would pay just $25AU per script (currently costing $4,600AU per script).

How you can help is by providing your submission directly to the PBAC (link below) or answering an online survey. All comments by individuals are de-identified.

https://ohta-consultations.health.gov.au/ohta/pbac-march-2026/

There are five prompted questions, and you can answer as many or as few as you wish, or answer none and upload something instead. The PBAC invites patients, carers and professionals to make a submission or complete the survey.  The PBAC site will close for comments on 20 January 2026.

Obinutuzumab is also actively being considered in Canada for lupus nephritis. It is currently undergoing the review process by Canada's Drug Agency (CDA-AMC) for potential public reimbursement.

Patient Input: Canada's Drug Agency (CDA-AMC) put out calls for patient and caregiver input to help inform their recommendations to government decision-makers regarding the funding and reimbursement of the drug. Organizations such as Lupus Canada and Lupus Ontario were actively involved in this process.

Not Yet Approved/Reimbursed: While the regulatory process is underway, the treatment is not yet officially approved for use in Canada for this specific indication, nor is it publicly reimbursed. 

Retirement of Founding Chairperson, Denis Tebbutt. Sadly, following over 10 years tirelessly giving us his time in leading our charity, we celebrate the many achievements we have made under Denis’ leadership and say farewell with appreciation for all his dedicated volunteer work and support. The list of his activities is way too long though highlights are his work in Indigenous Health, Chairing numerous Project and Board meetings, preparing AGMs and ensuring our charity’s governance was well managed.  We wish him great health and happiness in his next phase of life. We will all miss Denis, especially for his engaging and funny yarning at Dragon Talks.

Our planned rebrand. Early next year, we hope to launch our new rebranded charity. We have been working with a marketing company on the look and feel of our new website, social media, newsletter etc. However, the grunt of revising and uploading our existing material has been huge. We just had no idea how much material we had created until we started working on it.

Thank You. We would like to recognize our volunteers beavering away with this work. Firstly, the legendary Cami McBride leading the coordination and upload to the new site’s platform together with skilled guidance of our talented Marketing Director Demi Zeglinas liaising with the marketing team, our Director and Dragon Talks International leader,  Dr. Charmaine Jones for renaming our videos and checking the upload descriptive labelling, our Director/Treasurer Alison Marshall and family for uploading our videos to Youtube, Director Susan Hughes for writing up the sections, Who we are i.e. Board Members, Patient & Caregiver Advisory Committee (PAC), Stakeholders, Memberships, Partners;  Director Phil Godsmark for coordination of this work at every Project meeting. Together with Fay Baudains our Australian Dragon Talks facilitator, Phil is working on the new welcome video and more! Thanks also to all Board and PAC team members for your help and understanding.

We would also like to take the opportunity to thank our members for input in various projects over this year: the development of the MPaCT tool, the development and review of My Numbers tool. Also, for attendance at various meetings internationally and on line. Notably, Charmaine & Fay for attending the Global Remission Coalition event in Japan, Cheryl Zubrack for an international webinar with Global Remission Coalition. Fay and Charmaine for organising guest speakers and facilitating the Dragon Talks, for their work with the HUSH foundation, Charmaine presenting MPaCT at Putting The Pieces Together. Anne Hughes for organising the project meetings and significant input into and oversight of grant applications.

Looking forward to catching up with you in 2026 and may you all have a happy, healthy Festive Season.

Susan Hughes, Dr. Charmaine Jones and Acting Chair, Alison Marshall.