David Seymour's ‘whole of society’ plan for tipping millions of dollars more in to Pharmac - and Big Pharma
David Seymour, ACT leader and the minister in charge of Pharmac, is advocating for a significant transformation of Pharmac’s funding model. He proposes a “whole of society” approach, which assesses the broader societal impacts of funding or not funding medicines, rather than just their upfront costs. This model aims to justify increased government spending on pharmaceuticals by demonstrating potential savings in other areas, such as healthcare and welfare.
Read more here: David Seymour - Pharmac and big Pharma
Expressions of Interest for CLL Advocates positions
These are exciting times for our CLL community as the 'patient voice' becomes an essential factor in determining which drugs receive funding here in New Zealand. We are currently seeking at least one more patient trustee to join our team. While the time commitment is minimal, a strong passion for our cause is highly valued.
At our recent CLL Advocates Trustees meeting, we decided to establish a patient working group, which Diane Ward, a CLL Advocates Trustee, is enthusiastic to lead. This initiative aims to enhance patient input in our advocacy efforts.
World CLL Day is on September 1, a day that holds significant meaning for all of us. We need your support to spread these important messages to as wide an audience as possible. If you are interested in becoming a trustee or a member of the working group, please complete the form below and submit it by 10th August 2024.
Expressions of Interest for CLL Advocates positions
More blood cancer drugs move falls short, says Dr Rodger Tiedemann
Close to 4000 people with blood cancer and blood-related disorders are expected to benefit from a move to buy more medicines, but a haematologist says New Zealanders will continue to die early until more modern medicines are funded.
Dr Rodger Tiedemann said the announcement reflected "one small step for patients, one giant deal for Pharmac,".
Read more here: here
New medicine funding something to celebrate - but there’s a long way to go
Rodger Tiedemann, an associate professor of medicine at the University of Auckland and a consultant haematologist with Auckland Hospital’s cancer and blood service, highlights the critical underinvestment in modern medicines in New Zealand.
He commends the coalition Government's recent pledge to allocate $642 million over the next four years for new cancer treatments and non-cancer medicines, which is expected to benefit thousands of New Zealanders.
However, he underscores that despite this investment, New Zealand remains significantly behind other OECD countries in medicine reimbursement, reflecting chronic underfunding. This gap has led to limited access to life-extending and curative treatments, necessitating further substantial investment to bring the country's healthcare up to par with global standards.
Read the full article here
Government U-turn: Coalition mends broken promise with 54 new drugs funded
In a major U-turn, the Coalition Government has announced it will not only fulfil its promise of funding 13 cancer drugs but extend the funding to an additional 41 medicines.
However, not all of the treatments will be available as soon as cancer patients hoped.
Health Minister Dr Shane Reti and Associate Health Minister David Seymour announced on Monday the Government will spend $604 million to fund 54 new medicines - made up of 26 cancer drugs and 28 other treatments.
"Today we are delivering on the therapies we promised and more, with an unprecedented and transformative investment in cancer and other treatments," Dr Reti said.
"This will be a mix of new medicines and widened access to medicines that are already available."
The additional cancer treatments announced today have not been named, however, the Government said it includes medicines for blood cancers and other tumours. The other treatments could cover infections, respiratory conditions, osteoporosis, sexual health, dermatology, inflammatory conditions, and mental health.
Read the full article here
Open Letter to Prime Minister
In August last year, a promise was made to fund 13 new cancer medicines via a $280 million fund to Pharmac, starting July 1 this year.
These medicines, crucial for treating cancers such as lung, bowel, kidney, melanoma, and head and neck cancers, are already available in Australia. However, the recent budget announcement has left cancer patients and advocates in disbelief, as it appears these medicines may not be funded for at least another year.
Read the Letter to Prime Minister Chistopher Luxon, Minister of Finance Nicola Willis, and the Associate Minister of Health (Pharmac) David Seymour here: Open Letter
Valuing Life - New Zealand Medicine Access Summit
Diane Ward, a dedicated advocate and trustee for CLL Advocates, and Catherine Isaac our CLL chair, attended the prestigious Valuing Life Summit at Parliament’s Grand Hall. This event marked a significant milestone in healthcare collaboration in New Zealand.
To delve deeper into their insights and experiences at the summit, you can explore Diane's comprehensive summary here: Valuing Life Summary
Clinical Trials for Chronic Lymphocytic Leukaemia
Clinical Trials.
In New Zealand, individuals diagnosed with Chronic Lymphocytic Leukaemia (CLL) have some options when considering clinical trials.
Patients can explore trials aiming to improve outcomes and quality of life for those with CLL. Additionally, New Zealand's participation in international collaborations provides access to a diverse range of clinical trials, offering patients the opportunity to contribute to cutting-edge research while potentially accessing innovative treatments.
Note:
If a study is not open in your area, discuss with your Haematologist if you can be referred to a centre where it is open.
Centres will usually consider cross referrals, although it will mean some travel.
Sometimes for commercial studies the cost of travel and accommodation may be paid.
Please click on this link, Clinical_ Trials for information on available trials
A tribute to Dr Ben Schrader, former Trustee of CLL Advocates NZ
A tribute to Dr Ben Schrader, former Trustee of CLL Advocates NZ
Ben Schrader (19 July 1964 – 19 April 2024), was a brilliant, award-winning New Zealand historian, and a founding trustee of CLL Advocates. Ben was diagnosed with CLL in 2012 and joined Neil Graham, Gillian Corbett and Rebecca Graham in establishing our Trust in March 2019. Despite being in and out of remission over the following years, he continued to give his time to advocating for the needs of New Zealanders with CLL.
Ben was a lovely, generous, gentle man who was happy to serve as a backroom worker, but ended up playing a major role in several key public CLL Advocates initiatives. He led CLLers in a multi-patient group march on Parliament in 2019, presenting our petition on the steps of Parliament, calling for the Government to approve funding of ibrutinib and venetoclax. Ben appeared with Neil Graham and Rob Weinkove before a Health Select Committee hearing on the petition, presenting on our cause. In 2021 he appeared before the Pharmac Review Panel to make our case for the reform of Pharmac processes and funding. In 2022 Ben helped bring together our submission on the Pae Ora Bill, and made an oral submission to the Pae Ora Select Committee.
Each of these required a great deal of time, skill and courage, and we are very grateful to Ben for this and for the moral support he gave to our cause. Ben stepped down from his role as a Trustee recently due to his deteriorating health.
We send our deepest sympathy to Ben’s family.