Archive for August, 2011

August 19, 2011

Calling for a Minister of Cancer!

This week we’ve been involved in the launch of the CANGO election manifesto, which called for a Minister of Cancer to implement a range of initiatives, which could help prevent many cancer deaths in New Zealand. CANGO is a group of eight cancer NGOS working hand in hand under the CANGO umbrella to call for change.

I was really pleased to see such a timely response from the Prime Minister, John Key and the Health Minister, Tony Ryall, in response to our call, as it highlights the importance of cancer as New Zealand’s biggest killer. It was good to be able to respond on TV3’s Firstline programme on Thursday morning to discuss the manifesto and the need for a Minister of Cancer.

Cancer is a devastating disease that affects so many of us. At present there are 51 people diagnosed with cancer in New Zealand every day and around 30 per cent of all deaths in New Zealand are attributable to cancer.  The statistics are shocking.

Although the Prime Minister refuted the need for a Minister of Cancer, (I note there is a Minister of the Rugby World Cup), we see that it’s really important that someone takes charge and can be tasked alone to carry out the critical actions that CANGO has identified across all cancer services. This will ensure that many cancer deaths can be avoided.

It’s important to note that CANGO members are not asking for a political stand, but a cross-party one, so that whatever government comes and goes over the next ten years, cancer will receive the focus that is required.

The first point outlined in the CANGO manifesto is that New Zealand needs to be represented on the world stage, by attending the United Nations (UN) summit in New York on non-communicable diseases next month.  While most other countries are being represented at this meeting at a senior, if not head of state level, the government has yet to indicate whether New Zealand will even be attending this meeting.

This is concerning as this is a critical opportunity to make meaningful worldwide change as happened with HIV/Aids when it gained a similar UN platform some years ago. The New Zealand representation would focus on support of accelerating implementation of the WHO Framework Convention on Tobacco Control (FCTC) to reduce the availability and impact of tobacco. Smoking is such a critical issue in New Zealand society, where Maori women have the highest rate of smoking in the world!

CANGO are also asking for investment in national cancer research. CANGO are asking for the government to match dollar for dollar what the NGO sector is funding.  Investment in research is critical.  It means not only do we increase knowledge, but we also keep our researchers in New Zealand, rather than training them for other countries.

Workforce is a critical issue, a review of the cancer workforce needs to be undertaken urgently.  There are not enough specialists in some centres or GPs in rural areas and a lack of trained specialist nurses across New Zealand to name a few. These shortages affect the quality of care and services being offered to cancer patients across the country.  We see other pressure points such as the strain that is currently on bone marrow transplant services as they struggle to meet current demand.

CANGO seeks improvements for Maori and Pacific people in New Zealand who have a higher incidence of a number of cancers, and higher mortality rates than non-Maori. This is completely unacceptable.

There are also gaps for many New Zealanders in some rural areas who don’t always get equitable access to primary health care, diagnosis, treatment and palliative care. While there has been some success in improving hospital health outputs, but it has not addressed access and cost issues for many remote and rural populations and we know that Maori are often disproportionately represented in these populations.

It’s crucial to connect up the dots so cancer data is shared across all the services that work with cancer patients in New Zealand. And as part of this the cancer registry has been reviewed and found wanting, there are plans in place to improve this, but we wish to see the investment and change to give health providers much more relevant data than simply incidence and mortality and this data being available much more quickly than is happening now with often up to four year delays.

I was really heartened by the attendance of politicians attending the manifesto launch, Dr Jackie Blue, Grant Robertson and Kevin Hague, who responded to CANGO’s requests and acknowledged the need to invest and continue making change.

CANGO will be continuing to lobby politicians over the next 100 days and actively assess party manifestos to ensure the necessary attention is being given to cancer.

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August 5, 2011

Great news for CLL patients

I was very pleased to hear the news last week that PHARMAC had approved funding for MabThera (rituximab), for patients with chronic lymphocytic leukaemia (CLL).

This is just great for CLL patients, a real breakthrough for them and their families, as CLL has been pretty challenging to treat.

For these patients MabThera offers real hope, providing longer remissions, extended survival and a better quality of life.  This should give good encouragement to the 140 New Zealanders who are diagnosed with CLL each year.

While I’m really very heartened to see that PHARMAC has recently approved funding for several specialised cancer medicines in haematology, and I hope this trend continues, we know it is challenging to evaluate and fund drugs to meet the needs of cancer patients in New Zealand.  I still do have reservations about the ability of the PHARMAC to move in a timely and transparent manner. It will also be interesting to see how the newly proposed Exceptional Circumstances funding will work.  For more on this see my previous blog.

Another great thing that has happened at the Leukaemia & Blood Foundation (LBF) this week is the response we’ve been receiving to our request for patient stories to promote World Lymphoma Awareness Day (WLAD) on 15 September.  I’m absolutely thrilled that a number of people have come forward, keen to tell their stories, which is often not an easy thing to do.  We know people find it very helpful to read about others experiences.

WLAD is a very important way for us to raise awareness about lymphoma, and we couldn’t do it without the help of these wonderful patients.  There’s nothing more powerful than hearing about what they have been through in their own words.

Awareness around lymphoma is really important both amongst the general public and GPs as although it’s the sixth most common cancer in New Zealand, and the most common form of cancer in 15 to 24 year olds,  we know that around 90% of New Zealanders know very little about this disease and its symptoms.

If you or someone you know is living with lymphoma, we’d love to hear from you! Please contact Georgie Hackett our Communications & Media Relations Manager on 0800 15 10 15 (option one) or georgie@leukaemia.org.nz.