NEWSLETTER & UPDATES

From 1 May 2026, Pharmac is funding modern combination therapies - venetoclax with ibrutinib or obinutuzumab - as first-line treatment for CLL. Here's what this means for patients, plus our Budget 2026 reaction and upcoming Blood Cancer Alliance news.

This update recognises the contributions of outgoing Chair Catherine Isaac, welcomes Ruth Spearing as the new Chair, and highlights ongoing advocacy to improve access to CLL treatments. Trustees share progress on Pharmac engagement, medicine funding priorities, and support for a national declaration calling for urgent government action on health care.

CLL Advocates NZ has been reset and refreshed with new trustees, renewed strategic direction, and a strong focus on improving outcomes for people living with CLL. This update introduces new board members, highlights advocacy efforts to improve medicines access, and outlines plans to expand engagement with the CLL community across New Zealand.

CLL Advocates NZ shares key findings from recent patient focus groups, identifying priority areas for advocacy and support. The update highlights plans for local support groups, new patient resources, community stories, and opportunities to help strengthen the voice of people living with CLL across New Zealand.

On Matariki, CLL Advocates NZ reflects on the legacy of founder Dr Neil Graham and his lasting impact on the CLL community in New Zealand. The update also highlights ongoing advocacy for improved access to CLL treatments, concerns regarding Pharmac reform, and welcomes Dr Gillian Corbett as the organisation's new Medical Director.

CLL Advocates NZ outlines its key advocacy priorities for 2022, including access to new treatments, clinical trials, improved diagnostic testing, and better management of CLL-related health risks. The update also highlights plans for patient focus groups to ensure the experiences and needs of patients and caregivers help shape future advocacy efforts.

CLL Advocates NZ responds to the Pharmac Review Panel's interim report, which raises significant concerns about transparency, equity, decision-making processes, and patient engagement. The update outlines CLLANZ's advocacy efforts, submissions on health system reform, and ongoing work to ensure the voices of people living with CLL are better represented in medicines funding decisions.

CLL Advocates NZ pays tribute to its founder, Dr Neil Graham, whose leadership, advocacy, and compassion helped shape a strong community for New Zealanders living with CLL. The update reflects on his significant contributions to patient support, treatment advocacy, and public awareness, while encouraging members to help carry forward the mission he so passionately championed.

CLL Advocates NZ is seeking member feedback to help shape its future direction, resources, and advocacy efforts. This update invites patients, caregivers, and supporters to share their views on support services, research priorities, patient education, community engagement, and opportunities to help strengthen and sustain the organisation.

CLL Advocates NZ highlights opportunities for patients to learn about the latest international developments in CLL treatment through the CLL Horizons Conference and contribute to a global leukaemia patient survey. The update also raises concerns about delays to the Pharmac Review Panel's interim report and the need for greater transparency in medicines funding decisions.

CLL Advocates NZ shares important information about the heightened risks COVID-19 poses for people living with CLL and highlights promising new monoclonal antibody treatments that can reduce severe illness, hospitalisation, and mortality. The update also reinforces key prevention strategies, including vaccination, booster doses, and infection-control measures.

CLL Advocates NZ reports on its engagement with the Government's independent Pharmac Review Panel, highlighting concerns about transparency, funding processes, and access to modern treatments. The update outlines key advocacy priorities and recommendations aimed at creating a fairer, more effective medicines funding system for New Zealand patients.

CLL Advocates NZ provides an update on the risks COVID-19 poses for people living with CLL and outlines the latest guidance on vaccination, prevention, and treatment. The newsletter highlights the importance of protective measures, discusses emerging therapies, and shares practical advice to help patients stay safe during the pandemic.

Drawing on a personal experience with a serious skin infection, CLL Advocates NZ highlights the increased risks that cellulitis and sepsis can pose for people living with CLL. The update provides important advice on infection prevention, early recognition of symptoms, and the need to seek prompt medical treatment when concerns arise.

CLL Advocates NZ responds to the release of Pharmac's medicines funding wish list, highlighting ongoing concerns about underinvestment in life-saving treatments and lengthy approval delays. The update reinforces advocacy efforts to secure access to Ibrutinib, increase Pharmac funding, and support wider reforms to improve medicines access for New Zealand patients.

CLL Advocates NZ shares findings from new New Zealand research into secondary cancers among people living with CLL, highlighting the importance of skin cancer prevention and early detection. The update also encourages a holistic approach to health, including healthy lifestyle choices, regular screening, and proactive wellbeing management.

CLL Advocates NZ shares important information about COVID-19 vaccination for people living with CLL, including the increased risks associated with infection and the challenges of achieving a strong immune response. The update reviews emerging international research, vaccine developments, and why vaccination remains a vital tool for protecting vulnerable patients.

CLL Advocates NZ highlights Australia's ambitious National Action Plan for Blood Cancers and explores what similar initiatives could mean for New Zealand patients. The update also shares insights on diet, wellbeing, and practical lifestyle considerations that may help support people living with CLL.

CLL Advocates NZ announces a new research project investigating secondary cancers in New Zealanders living with CLL, supported by funding from the Bay of Plenty Medical Research Trust. The update highlights the importance of cancer screening, invites patient participation in the study, and encourages greater engagement with the CLL community and support networks.

CLL Advocates NZ celebrates the success of its first national patient seminar, bringing together leading New Zealand CLL specialists and patients from across the country. The update highlights key treatment priorities, the launch of the organisation and its new patient guide, and efforts to improve education and support for people living with CLL.

Marking Blood Cancer Awareness Month, CLL Advocates NZ highlights the value of collaboration, knowledge sharing, and patient support both in New Zealand and internationally. The update covers the launch of a new patient guide, the upcoming inaugural CLL seminar, opportunities to engage with global CLL networks, and the importance of advocating for better access to treatments.

CLL Advocates NZ highlights a range of research initiatives aimed at improving outcomes for people living with CLL, including clinical trial opportunities, studies into secondary cancers, and participation in New Zealand health research. The update also encourages patient involvement in research and provides an early reminder about the upcoming national CLL education forum.

CLL Advocates NZ highlights valuable international patient resources, including HealthUnlocked and Patient Power, and shares emerging research on COVID-19 outcomes for people living with CLL. The update also explores developments in CAR T-cell therapy and invites patients and families to the organisation's first national CLL education event.

In its inaugural newsletter, CLL Advocates NZ shares priorities for supporting the CLL community through education, advocacy, and connection. The update includes guidance on managing CLL during the COVID-19 pandemic, introduces new patient information resources, and announces plans for a national CLL seminar featuring leading New Zealand specialists.