Medicines Crisis Campaign events next week
Come and hear patient advocate Malcolm Mulholland speak about his personal journey with cancer, what cancers are prevalent in your community and what drugs you are missing out on, the stories of local patients who needed medicines, New Zealand’s medicine crisis and what can be done about it.
Venue: Globe Theatre, 312 Main Street, Palmerston North
When: Monday 4th September 7:00pm - 8:00pm. For more information, please click on this link to rsvp: Palmerston North Event
Next events:
Tuesday 5th September in Whanganui: Whanganui Event
Wednesday 6th September in New Plymouth: New Plymouth Event
Monday 11th September in Havelock North: Havelock North Event
For the full list of events please click here
MyLifeMatters launched at 6am today 28th August 2023
The MyLifeMatters campaign launched at 6am today!
MyLifeMatters is a collective of patient advocate organisations representing more than 1 million patients with cancers, rare disorders, diabetes, and other life limiting conditions calling for the New Zealand Government to tackle the issue of investment and timely access to new and breakthrough medicines for the people of New Zealand.
Visit the MyLifeMatters campaign website here to see the media coverage and find out about campaign events in your region.
Read the RNZ article on campaign here
New Zealand’s Medicine Crisis Campaign Launch
CLL Advocates NZ is proud to be joining Malcolm Mulholland with Patient Voice Aotearoa in a Nationwide campaign urgently calling for reform of Pharmac and an increase in its budget – and we need your help.
When: Monday 28 August at 6.00 am!!
Where: 2-8 Anzac Ave, Auckland CBD (Beach Road end)
We’d really love to have some CLL patients, friends, family and supporters there, the more the better, preferably with signs. We’ll post more details as they become available including information on events in other cities. You can follow Patient Voice updates here.
If you have other suggestions or ideas to help this great cause, please contact Diane Ward here or at dianew564@gmail.com
Bitter pill: New report finds NZ lags behind in timely access to medicines
The Shawview Report, commissioned by Johnson & Johnson, is a valuable, timely round-up of the inherent problems in our medicines funding system and offers some good solutions, including innovative funding mechanisms in action in other countries, as well as the immediate need to fund Pharmac’s current backlog of approved medicines waiting for funding.
If you're contemplating taking a proactive approach to establish connections with politicians before the upcoming election, with the aim of advocating for issues related to Chronic Lymphocytic Leukaemia (CLL) including the deficiency of new medications and treatment protocols, these resources – the report and the interview featuring Brendan Shaw – represent invaluable tools to help assist you in this process.
Listen to the RNZ interview here: RNZ Shawview report interview
Here is the report
Dr Ruth Spearing - New CLL Advocates Trustee
We are delighted to announce that Dr. Ruth Spearing will be joining CLL Advocates as a Trustee.
Dr. Ruth Spearing is a highly esteemed haematologist and medical researcher with a keen focus on CLL. With over three decades of experience, she has led internationally acclaimed research in the field of blood cancers. In 2008, the Ruth Spearing Cancer Research Trust was established, providing invaluable support for haematology research in the South Island.
Throughout her career, Ruth has held various leadership positions, serving as a Board Member of the New Zealand Medical Association, a member of the Canterbury District Health Board Clinical Board, and as Chair of the Canterbury Hospitals Medical Staff Association.
Welcome, Ruth! We are honoured to have you as part of our team.
Health Technology Assessment Conference
Last week one of our CLLANZ Trustees, Catherine Isaac, was very lucky to have the opportunity to attend an international Health Technology Assessment conference HTAI Conference 2023 in Adelaide.
Among the 600 attendees from around the world were patient advocacy groups, researchers, academics, public policy makers, industry, and drug funding agencies.
There was quite a strong New Zealand presence, including other patient advocacy groups and Pharmac, and it was a good opportunity for us to build relationships and have some informal discussions during the conference breaks.
Overall, the conference was an amazing opportunity to learn from international best-practice models of patient involvement in medicines funding, and to make personal connections with individuals and organisations with similar objectives to ours.
A key theme was innovation in medical treatments, health system policy and patient care. We hope to use the lessons from this to make meaningful gains in improving the lives of New Zealanders living with CLL, through timely access to effective, international standard-of-care treatments.
CLL Advocates Newest Trustee
A very warm welcome to our newest CLL Advocates NZ Trustee, Diane Ward.
Regular followers of our Facebook group will know Diane well, and we’re delighted she’s willing to join the Board and contribute her skills and lived experience and her in-depth knowledge of CLL to our work.
Here is a little bit about the lovely Diane:
Diane Ward is a retired primary teacher, principal, and ESL teacher. She is well travelled and has lived and worked in several different countries.
She was diagnosed with CLL in 2018. It came as a shock and since then she has made a number of lifestyle changes. She has researched CLL and is passionate about fighting for the funding of drugs that are readily available in many other countries as first line treatment.
She would like everybody who is diagnosed with CLL to have a funded initial appointment with a specialist who could explain its intricacies.
Diane is a regular contributor to our Facebook group and is keen to encourage wider engagement in discussion and active support for our efforts to access better treatments for New Zealanders living with CLL.
Health Select Committee's report into the Therapeutic Products Bill
On Tuesday 14th of June, the Health Select Committee's report into the Therapeutic Products Bill was released. It can be accessed here: Therapeutic Products Bill final report
If you have had the chance to thoroughly review this report and have gained additional insights, please do to share your findings to: clladvocates@outlook.co.nz or via our CLL Advocates Facebook group: CLL Advocates Facebook group
We have a significant amount of information to cover, and we are particularly concerned about the future of New Zealand's clinical trial framework, especially regarding the absence of an equivalent to Section 29.
Therapeutic Products Bill Hikoi
Warmest congratulations to Dr Ruth Spearing CNZM
Dr Ruth Spearing, a distinguished haematologist and medical researcher with a strong interest in CLL, has been made a Companion of the New Zealand Order of Merit for services to haematology in the King’s Birthday Honours.
Dr Ruth Spearing has been a consultant haematologist and taken a lead nationally in haematology trials. She was involved in setting up the partnership with the UK Medical Research Haematology Trials group which New Zealand joined in 1989. As well as many other clinical trials, she is the New Zealand Principle Investigator for the UK MRC Acute Myeloid Leukaemia trails which have has seen an improvement in survival in this condition from 2% to 56%. The outcomes are now as good as if not better than other countries. She was the New Zealand Principal Investigator for the UK MRC myeloma VII trial which was published in the New England Journal of Medicine and which established autologous (self) stem cell transplantation as part of the upfront treatment of myeloma.
She has a particular interest in adolescents and young adults and is the Canterbury Clinical Lead for the Adolescent and Young Adult Cancer Service and on the National Adolescent and Young Adult Cancer Governance Group. She has also had various leadership roles being a Board Member of the New Zealand Medical Association, an elected member of the Canterbury District Health Board Clinical Board and Chair of the Canterbury Hospitals Medical Staff Association.
Looking after Barry Mather was a privilege as he was obviously such a fabulous and generous man. He was aware that only with research will there be any meaningful advances. It is very satisfying to see that money that Barry has donated has gone to towards research into the condition that he had, Chronic Lymphocytic Leukaemia, and also to enable the setting up of a Clinical Haematology Research Unit down in Dunedin which now is progressing well with its own funding.
See RNZ’s interview here: Kings-birthday-honours-Ruth-Spearing
Haematologist Dr Ruth Spearing said being made a Companion of the New Zealand Order of Merit for her services to haematology was a "huge" honour and surprise.
"I'd like to think that I'm actually accepting this on behalf of all the haematologists in the country," she said.
Spearing has led internationally recognised research into blood cancers for more than 30 years, and the Ruth Spearing Cancer Research Trust was established in 2008, which supported South Island haematology research.
Spearing said a career highlight had been persuading Pharmac to fund a drug which enabled New Zealand to be part of a recent trial.
"We managed to persuade them that they needed to bend their rules and as a result of them bending their rules and enabling us to purchase a drug at a greatly reduced cost outside of their usual rules, it resulted in us getting the best ever results.
"Persuading Pharmac to do that is probably my career highlight."