Dr Philip Thompson is a clinician and researcher at the MD Anderson Cancer Centre in Texas. In October 2019, he presented at a Leukaemia Foundation forum on the latest research and directions in CLL management and treatment.

Go along in person or watch live on Facebook (see details below) as Pharmac presents their oral submission at the Committee’s meeting on Wednesday, 23 October 2019, from approximately 08.30am to 09.50am, at Parliament Buildings in Wellington. They will address all of the following petitions in one submission.

• Petition of Jeffrey Chan: Ask Pharmac to fund Osimertinib
• Petition of Rachel Brown for Ovarian Cancer New Zealand: Fund Lynparza and Avastin for Ovarian Cancer Patients
• Petition of Emma Crowley for Breast Cancer Aotearoa: Breast Cancer Aotearoa Coalition: Fund breast cancer drugs
• Petition of Neil Graham for Chronic Lymphocytic Leukaemia Advocates New Zealand : Fund life-saving treatments for chronic lymphocytic leukaemia
• Petition of Philip Hope for Lung Foundation New Zealand: Ask Pharmac to fund innovative treatments for lung cancer
• Petition of Kenneth Romeril for Myeloma New Zealand: Fund transformative treatments for multiple myeloma patients
• Petition of Janine Yeoman: Lifesaving treatment for people who suffer from Spinal Muscular Atrophy
• Petition of Allyson Lock for the New Zealand Pompe Network: Fund Myozyme for Adults with Pompe Disease

The meeting will be open to the public, and you are welcome to attend in person or watch the live stream of the hearing on the Health Committee Facebook page here.. At this time the exact room the meeting will be held in is not decided, but you will be able to check which meeting room it will be held in closer to the date of the meeting on the Select Committee Schedule webpage here. The meeting room will also be displayed on electronic signboards inside Parliament on the day.

I’ve just returned from attending two back-to-back conferences on CLL in Edinburgh. The first was the international  CLL Advocates Network (CLLAN) Horizons conference for CLLAN members. The second was the 2019 International Workshop on CLL (iwCLL), a major medical and scientific meeting. Both conferences were excellent.

Horizons focused on CLL patient advocacy group models from around the world, what made them work, where improvements could be made, and where the future was heading. There was a lot of discussion on sharing of resources amongst the various groups, so as not to “reinvent the wheel”, and you will soon see examples of this here on our site.

Psychosocial support provision, use of social media to communicate among individuals and groups, examples of successful advocacy, and the various ways in which advocacy groups can make positive contributions to research were major components of the formal presentations. There were also several presentations about the current state of the science and medical therapeutics of the disease CLL.

I was invited to present the story of a new advocates’ group, on how we’re developing CLLANZ and lessons learned, as well as the future role of the organisation. Click below to view my presentation.

The iwCLL meeting (attended by close to 2000 delegates) covered in great detail the science and the medicine of CLL in 2019, and the directions investigative science and medical therapeutics will take in the next few years.

I will be sharing specific aspects of interest  from the conference presentations with you on this website , over the next few weeks, linked to areas of research and treatments

Best wishes

Neil Graham

Dr Neil Gram writes on behalf of CLL patients to ask Pharmac to revise the decision to fund only venetoclax for the treatment of CLL, by funding ibrutinib as an essential treatment for CLL, in addition to venetoclax. While we welcome the fact that a new era treatment for CLL has at last been funded, we have serious concerns about the limitations of the chosen medicine and its inability to meet the needs of all CLL patients, in particular those with severe CLL.

Click here to view the letter sent to Pharmac on 12 September 2019

This article was originally published on the New Zealand Herald

The Government has today unveiled plans to establish a national cancer agency, which will be led directly by experts of the deadly disease, and a $60 million injection into Pharmac.

Key announcements:

Until today, decisions about how to tackle New Zealand’s cancer “crisis” came from bureaucrats within the Ministry of Health.

By December 1, the Government has promised decisions will come from a team of top cancer specialists who will report directly to Health Minister David Clark. That is the date the agency will officially be up and running.

World-leading public health physician and cancer epidemiologist Professor Diana Sarfati has been appointed as the Ministry of Health’s interim national director of the agency.

“This is huge for New Zealand. It’s the biggest change in cancer care in at least 15 years, if not ever. When the UK appointed a national cancer director there was an unprecedented improvement and survival rates increased dramatically,” Cancer Society of New Zealand medical director Chris Jackson said.

It comes after a powerful public movement started by dying dad Blair Vining who launched a petition calling for a national cancer agency to hold District Health Boards to account and put an end to postcode lottery.

His petition gained more than 140,000 signatures from New Zealanders across the country.

One of the main aims of the plan is to have equitable cancer survival rates across New Zealand by 2030 – including across geographic areas and across ethnicities. Māori cancer outcomes will be one of the first priorities as Māori have higher rates of cancer and poorer survival rates overall.

Funding decisions will be made with an “equity first” methodology, the plan says.

For example, the national bowel screening programme, which is still being rolled out, makes screening free for people aged 60-74.

But because Māori people tend to develop bowel cancer at an earlier age, the plan suggests the screening programme could be made free for Māori ten years earlier, between the ages of 50-74.

Another aim is for New Zealanders to suffer from fewer preventable cancers.

Lung cancer is the top of the list, with prevention strategies including promotion of vaping and the finalisation of a Smokefree 2025 Action Plan.

The plan also highlights improved detection and management of Hepatitis A, B and C, reducing HIV transmission, increasing the uptake of the HPV vaccine and addressing Helicobacter pylori infection in priority populations.

Skin cancer will also be a target, with promotion of sun safety – particularly among children – and sunscreen could also be regulated as a therapeutic product, the plan says.

A programme will also be developed to prevent work-related cancers.

Another aim of the plan is to improve survival rates once people have cancer, with an emphasis on better, earlier screening, and improved treatment once diagnosed.

Strategies including increasing the age of free breast screening from 70 to 74 years old, progressing the national bowel screening programme and exploring bringing in HPV screening as part of the cervical screening programme.

The radiation and oncology workforce could also see a boost to its workforce and resources.

Fast-track diagnostic pathways will be developed for “priority cancers”, and there would be a national agreement on the scope and distribution of specialist cancer services.

“Quality performance indicators” will be introduced under the plan to ensure specific cancers are being diagnosed and treated consistently across New Zealand.

Bowel cancer has been used as a test case for QPIs with the first results published for diagnosis and treatment in March this year. The Bowel Cancer Quality Improvement Report compared DHBs on measures such as death rate after surgery, length of stay in hospital and where at least 12 lymph nodes were examined.

By early 2020 prostate, lung and neuro-endocrine tumours will also have similar reports published.

Health Minister Dr David Clark said the Government has listened to calls for strong central leadership and will deliver the promised Cancer Control Agency by December 1, 2019.

“Cancer care is woven into so much of the work that our public health service does, so while the agency will have its own chief executive, it makes sense for it to be housed within the Ministry of Health.

“I’m also pleased to announce that leading public health physician and cancer epidemiologist Professor Diana Sarfati has been appointed interim National Director of Cancer Control, starting immediately. She will lead work to improve the quality of treatment.

“An immediate priority will be establishing quality performance indicators for specific cancer types. This will mean we can measure progress towards consistent care across DHBs.

“We are also combining the four current regional cancer control networks into a National Network to help remove regional variations in care,” Clark said.

More Pharmac funding welcomed

Pharmac has welcomed the $60m funding injection, which includes $20m for this year and $40m for 2020/21. That’s on top of $10m announced in this year’s Budget.

That brings Pharmac’s annual medicines budget to over $1 billion, Pharmac board chair Steve Maharey said.

In last year’s Budget, the Government increased Pharmac’s funding by more than 13 per cent, from about $870m to $985m. That compares to increases of 2.4 per cent and 6.3 per cent in National’s last two years in government.

Pharmac announced this afternoon it was proposing to funding three new medicines to treat ovarian cancer (olaparib, known as Lymparza), breast cancer (fulvestrant, known as Faslodex) and leukaemia (Venclexta – used to treat chronic pymphocytic leukaemia).

It is also proposing making contraceptives Mirena and Jaydess available to more people, and making the meningococcal ACWY vaccine free for people in close living situations like hostels and army barracks.

The medicines could be available from November if consultation feedback is positive.

Pharmac said it was also looking to get the best deal for New Zealanders for a particular type of advanced breast cancer.

Two registered medicines palbociclib (Ibrance) and ribociclib (Kisqali) could be suitable, experts believe.

Pharmac said it had issued a request for proposals and one of these medicines could be available from April next year.

Prime Minister Jacinda Ardern said from next year Pharmac will also speed up its decision-making by considering applications for funding while Medsafe assesses the safety of new medicines.

“Rather than waiting until that work is complete as it does currently. Work on options for early access to new cancer medicines is also progressing well,” Ardern said.

New Zealand’s history of tackling cancer:

1999

– Labour Government announces plans are under way for first ever cancer plan.

2003 – Cancer control strategy released included cancer prevention, screening, early detection, treatment, rehabilitation, support and palliative care.

2005 – Labour Government establishes national agency known as Cancer Control Council, formally Cancer Control of New Zealand, to provide independent advice free from political interference.

2014 – National Party-led Government introduces three-year cancer plan, including a faster cancer treatment target requiring most patients to start treatment within 62 days of diagnosis.

2015 – National disestablishes Cancer Control Council, saying it is no longer necessary as it has been superseded by new plan.

July 2017 – Pre-election, Labour promises to set up a National Cancer Agency, with $10 million to establish the agency and a further $10m to get work under way.

2018 Labour-led Government ends public reporting of DHBs’ faster cancer treatment target results, although the data is still collated.

Jan 31, 2019 – Melissa Vining blasts Health Minister David Clark for not following through on promise to establish cancer agency.

Clark announces the Government’s plan to tackle cancer is under way and he expects to see a draft by the end of June.

May 6, 2019 – Herald starts investigation revealing hundreds of Kiwi cancer sufferers have received large taxpayer-funded payouts after being let down by the public health system.

June 28, 2019 – Blair Vining launches petition calling for a national cancer agency to hold District Health Boards to account and improve the health care system.

June 29, 2019 – Herald reveals Prime Minister’s letter to Blair’s daughter Lilly Viningsuggesting agency is not part of the Government’s plan.

More than 650 New Zealanders gathered in Invercargill to join Vining as he handed over a petition to National’s Michael Woodhouse.

July 7, 2019 – Vining’s petition closes to the public.

Today – Government’s unveils plans to establish a national cancer agency lead by experts of the deadly disease.

The following talk was presented by Dr Neil Graham to the Health Select Committee on 7 August 2019 to support the submission calling for the Select Committee to strongly recommend funding of two life-saving treatments.

“My written submission was to request funding for ibrutinib and venetoclax for CLL, two examples of the new era of cancer treatment medications.

In early 2019 the Cancer at the Crossroads conference was held in Wellington, a major national conference to assess and review the status of cancer treatment in NZ.
An editorial was published in April this year in the NZMJ, reviewing the conference.

To quote from the first paragraph of that editorial:

“Cancer is the leading cause of death in Aotearoa/NZ. The number of those affected by cancer is forecast to increase by 50% in the next fifteen years…..

Our survival rates from cancer lag behind those of Australia, Canada, and Scandinavian countries, and are not improving at the same rate as elsewhere “.

This is a red flag for how we manage the commonest cause of death in our country. We are not doing well by international standards.

In the last decade or so there has been a revolution in cancer medication development internationally, of a magnitude greater, perhaps, than any one area of disease ever. It has been likened in effect to the development of antibiotics for infectious diseases almost a century ago. And it is growing exponentially. It has been predicted that cancer will become controllable, even curable, in the next decade or so.

Some NZers have had their lives saved by these new medications – two of those (Ben and I) sit in front of you today. For me, five years ago, I had transfusion-dependent bone marrow failure. I was likely to die. I was given access to ibrutinib, went into remission, and have been well ever since, working, contributing to society, paying taxes, and living a full life. Ibrutinib saved my life.

Other NZers have not been so lucky.

Most new era life-saving cancer drugs are not funded. If you are wealthy, sell your house to pay, beg in its various guises, move to Australia, or get into a drug trial, you live. If not, you die. And die of a treatable disease. And NZers ARE dying, unnecessarily, because they can’t access these life-saving medications.

Pharmac can’t, or won’t fund them. This is in contrast to Australia, UK, Canada etc, where these medications, including ibrutinib and venetoclax, are funded.

This is still not widely known nationally, but there is an increasing awareness because of this May’s march on Parliament, Blair Vining’s case publicity, and others. When this becomes widely known, it is likely that the NZ population will be critical of NZ health services for allowing this to happen. It is unlikely to be tolerated. You may remember the outcry over hepatitis C in the early 1990’s.

Two other points:
Pharmac has said recently that medications have a relatively small role in cancer treatment. Whilst overall this has some truth, it is not the case for leukaemias, where prevention and screening for early detection have no role, and surgery and radiotherapy have a minimal role. Treatment is all chemotherapy/medications.
And it is the mainstay of treatment in the context of attempted cure in the case of serious cancer in the form of metastatic disease.

Secondly, international guidelines, written by world authorities and specialist societies are not adhered to in NZ, as medications when not funded are generally not able to be used. In CLL, venetoclax, and, even more so, ibrutinib are the first choice medications in international guidelines for severe forms of CLL. But they are not used when not funded.

So people in NZ die unnecessarily.

NZ will increasingly stand out as doing badly in cancer medicine because of this lack of funding – what has been described as third world medicine in a first world country.
So, to finish, the current Pharmac model is not working for modern oncology practice.
My submission makes suggestions regarding this (5 – 9).

The Pharmac model needs to change for modern oncology.

Current Pharmac processing of applications for oncology medications takes almost two years. When you’re dying of cancer, this is woefully inadequate. A rapid access programme for cancer treatments must be developed for these patients.

I would ask/beg this committee to recommend review of Pharmac’s model in modern oncology practice, particularly funding. We spend 5% of our health budget on medications. Other similar countries spend 10 – 15%+.

Involved groups (clinicians, policy makers, Pharmac, patients, and the industry) need to get together and develop a new model to stop the disgrace of NZers dying unnecessarily.”

On Thursday 7 May hundreds of cancer sufferers marched to the steps of Parliament to ask that the drugs that extend or improve the quality of lives are funded by Pharmac.

Watch the video of the march and Ben Schrader’s speech below.