January 24, 2013

Access to care for PNH patients

The media this morning, carried considerable coverage around access to Soliris, a drug  used to treat a rare and unpleasant blood condition paroxysmal nocturnal haemoglobinurea (PNH).

PNH is a very challenging blood condition, which cannot be prevented and brings with it significant loss to length and quality of life.

It concerns us that at present there are no effective treatment options available for New Zealand PNH patients. These patients are often younger, clearly a solution needs to be arrived at urgently to meet their needs, and we certainly support access to this medicine.

Frankly, there is an on-going challenge in New Zealand with the current PHARMAC assessment of high cost and highly specialised medicines. This really hits hardest when the conditions are rare, as with PNH. Each and of themselves the numbers may be small, but collectively, large numbers of people are affected and we don’t have a system that is catering well to support them. Let’s also remember these are not preventable diseases, the causes are unknown and by no fault of their own patients find themselves diagnosed with something rare, difficult and expensive to treat.

Achieving reimbursement for these medicines is problematic pharmaco-economically under the current PHARMAC process, they simply will never look cost effective compared to cheaper treatments for other conditions.  Treatment for a number of blood conditions and blood cancers is becoming increasingly specialised, personalised and yes, expensive.

However, these treatments are becoming more targeted and increasing in efficacy, meaning that only those who will gain real benefit will be treated, as in the case of patients with PNH. What is rarely mentioned are the considerable downstream costs of not treating, this likely leads to significant morbidity, blood transfusions and hospital admissions.

In addition to requiring access to this particular drug, access to drugs for rare conditions are a growing issue in New Zealand, and something that as an organisation Leukaemia & Blood Cancer New Zealand will keep engaged with.

Like others, we would welcome meaningful movement from both sides of the negotiating table to bring this drug to patients.

Please see below for media coverage on the issue below.

TVNZ Breakfast
New Zealand Herald

February 3, 2012

2012 off to a flying start

I hope you had a great break over the Christmas and New Year period. The LBC team are back on board, relaxed, refreshed and ready to go.

We’re really looking forward to 2012 and have many exciting things planned for this year! The team are currently putting in place plans for this year’s Shave for a Cure. We have a big surprise for Shave Week this year (March 26 to March 31).  It will provide a neat way for so many Kiwis to get involved in the Shave phenomenon. Watch this space for more details!  If you want to find out more about Shave or sign up do visit our website www.shaveforacure.co.nz.

I’ve also been thrilled to see the wonderful work that is already underway by our Support Services team.  They have been busy helping patients and families over the holidays and it’s always great to see the impact of those wonderful relationships they develop.  A great example of this is the’ joke sharing’ arrangement some of our very young patients have with one of our staff members – she passes these jokes on to the staff and they keep us endlessly amused!

We’re very pleased that work has also begun on our office building renovations –there is a little more noise and an evening up  of the gender balance on the site! The first stage of the project involves the villa we call home, being given a much needed lick of paint and a tidy up.  Then we will begin outfitting an unused part of the building to re-house our Support Services team And set up a new patient and family space – very exciting times.

We’ve also been thrilled to reach 3,000 fans on our Facebook page.  It’s just so great to see so many people using social media to interact with us about their conditions, promote their fundraising events and find out more about what we do!  If you’re not a fan, or want to see what we’re up to visit our Facebook page  – https://www.facebook.com/#!/LBFNZ

December 2, 2011

November round up

November has been a great month for the LBF, with lots going on as Christmas approaches very quickly!

I was very pleased to head to Christchurch for our Clearwater Golf Marrowthon on November 22.  The event was truly special and showed just how wonderful and generous the people of Canterbury are! To raise $38,000 for the LBF after such a tough year was an absolutely outstanding achievement.  I was thrilled to see the 24 players enjoy themselves taking on 100 holes.  It was particularly fantastic to see three myeloma patients tackle the challenge, especially one player who had undergone chemotherapy the previous day – what an outstanding effort!  Many golfers were playing in support of loved ones who have blood cancer, and it was so wonderful to meet so many family members and two very young patients on the day.

The support we had for the Farmers Santa Parade last weekend was also phenomenal!  We had an army of 200 volunteers collecting for us who gave it their all, and wowed the crowds lining the streets of Auckland ‘s CBD. They helped us collect a record amount of over $14,000.  A very, very big thank you to everyone who took part and for Farmers for involving us in their parade and for all they do for us throughout the year.

Finally I thought you may be interested reading an article written by Associate Professor Brian Cox that was published in the New Zealand Herald last week.  It focuses on the need to adopt an updated cancer plan to ensure we are measuring how effectively New Zealand is tackling cancer.   I agree wholeheartedly with Brian that it is vitally important to update cancer planning to ensure everybody in the sector agrees on a way forward and a sensible way to utilise limited resources. It is critical that cancer plans, targets, monitoring and reporting are implemented to ensure that we know how well we are doing in the battle against cancer, which is New Zealand’s biggest killer.  The statistics are shocking. I also believe the Government should draw on the knowledge of Cancer NGOs.  They play an active and vital role in the sector and it is important that their expertise is called on and valued.

Whilst monitoring radiation times is very important we also need to tackle the challenge measuring and reporting on access inequalities which are resulting in early death and poor outcomes for Maori and Pacific Island patients.

November 11, 2011

Leukaemia Awareness Week

I’ve been really thrilled with how successful Leukaemia Awareness Week (7- 13 November) has been this year.  It provides a really great way for us to let people know just how prevalent blood cancers are in this country and the impact they have on around 10,000 Kiwi families.

We’ve had such great support from the media including a fabulous piece in the New Zealand Herald, various radio interviews, and a great piece in the Sunday Star Times Don’t take miracle drug for granted, caution doctors 23.10.11 .   This is really heartening as it’s always a challenge to get media coverage around blood cancer.  There are many reasons for this including the fact ther is no prevention message we can attach to blood cancer, as we can’t screen for it as we still don’t know what causes it.

We just love that our friends at Farmers have yet again very generously helped us get the word out there and promoted Leukaemia Awareness Week in their stores across the country.

I’m also really proud of a series of films we launched this week  – Leukaemia My Story.  These feature a range of New Zealanders who have very bravely shared their experiences of being diagnosed with
leukaemia.  You can check these out on our YouTube channel 

October 21, 2011

The Cost of Cancer

There has been much comment in the media over recent weeks about the cost of cancer in New Zealand. This has been driven by two recently published reports – a Ministry of Health report, ‘ The Price of Cancer’, which has put the cost of diagnosing and treating cancer at over $500 million each year. This figure is likely to increase by 20% by 2021. An article also appeared in the Lancet journal ‘Delivering affordable cancer care in high income countries’, which puts the worldwide cost of cancer from disability and premature death at US$895 billion.

These reports have raised some key questions. What are the drivers and solutions to the cost of cancer in New Zealand and how are we going to deliver high quality and equitable care?

There is no getting around it – cancer is expensive to treat and blood cancer is in the top three of the most ‘expensive cancers’ (behind breast cancer and colorectal cancer). Treatments for blood cancer are complex, and often long-term. Bone marrow transplants do not come cheaply, including transporting donor marrow across the world, and extensive chemotherapy is often needed for long periods of time.

Considering that cancer is New Zealand’s biggest killer, causing nearly 30 per cent of all deaths, it’s very important that a multi-faceted approach is taken when looking at cancer interventions and treatment. There is no quick fix solution to reducing the cost of cancer, but I believe it critical that as we consider solutions we should ensure they are patient-focused.

Rather than looking purely at the fiscal costs of cancer interventions and treatment, it is important that we also consider the huge costs to the patients and their families who receive a cancer diagnosis. Cancer takes an enormous toll on patients and families and this does lead to corresponding costs to the country. Aside from the physical and psychological effects of being ill or supporting a loved one through cancer treatment and physical side effects there are many associated psychosocial effects.

Many patients and their families have to cease work and relocate to other cities with very little notice, to receive the treatment they require. Often a partner or spouse will also need to quit their employment to support them, at times the family is split geographically to manage family and school care. This can often have huge practical and financial implications. Cancer puts great strain on families, and separation and stress may often result in the breakdown of family units. There are also longer term implications for patients who in some settings may face discrimination or difficulty in re-entering the workforce and are penalised heavily with future insurance needs.

There have been suggestions over the last few weeks, that New Zealand should be more selective about what treatments are offered to cancer patients, as some are not particularly effective and we shouldn’t be investing in ‘new technologies’.

While there is no denying it is very important to consider the effectiveness of treatments on offer, continued investment in cancer treatments is crucial. These treatments not only significantly improve survival; they reduce hospitalisations and the need for expensive supportive care, not to mention in many cases allowing the individual back to real life and participating in the workforce.

There are a number of less obvious costs to the country when people with cancer are not treated quickly and effectively. This seems to be forgotten when wringing our hands and crying poor as a country because new medicines are costly. One thing is certain we are in a new era of drug development, yes it is costly, but we are also getting smarter at not using the shotgun approach but instead treating smaller subsets of patients with targeted medicines which are not given to those we know won’t respond.

A really good example of this is Glivec (imatinib). We lobbied hard for the funding of this drug nine years ago. Glivec is used to treat chronic myeloid leukaemia (CML). Prior to Glivec being released, CML was a deadly disease for the majority of patients. With the advent of Glivec, CML has become a manageable chronic disease. When CML is detected early and treated well, patients can expect to live a long and good quality life, taking a pill on a daily basis. For around 90% of patients their disease will not progress. Put basically, this treatment has allowed patients to remain in the workforce and out of hospital, thus reducing the costs to taxpayers.

There are many steps that can be taken to improve processes and understanding and therefore provide some solutions to the increasing cost of cancer. I would suggest that this should start by putting patients at the centre of the solution. A simple example would be to start with clinical trial design. There needs to be a far greater focus on patient reported events, side effects, additional monitoring interventions, and greater reporting of the impact on quality of life, ability to return to work etc. These simple changes could be factored into drug assessments alongside their clinical efficacy and form part of regulators and payers decision-making. New Zealand is woefully lagging in the area of patient representation on key evaluation committees and in areas where they are directly affected – but their view is neither sought nor respected.

A patient-centred focus on wastage and compliance would also realise savings. It is perhaps the unique area that I would say, PHARMAC, industry, doctors, pharmacists and patients all align and each benefit from good adherence to treatment. We know many patients are not fully compliant with oral medicines once their disease appears to be under control. Not being compliant is costly (the drug has already been paid for and dispensed) the patient’s treatment is suboptimal, the company has in an interest in knowing their drugs are used properly for maximum benefit as do the doctors who are prescribing them.

It’s really important that patients are well-educated by health professionals about their cancer medications. Effective understanding results in medication being taken as prescribed, meaning that it will work effectively and reduce the need for additional treatment or hospitalisation.

Apart from the myriad of other areas to tackle with drug regulation and reimbursement I also see it to be very important that when looking at the cost of cancer we consider the need for investment in research in New Zealand. What causes particular cancers? We know that with blood cancers we are short on these answers, hence no prevention messaging. The more we can find out about these deadly diseases, the more we can do to prevent them, thus saving lives and reducing the need to invest further millions of dollars into treating them.

October 5, 2011

Bone Marrow Transplant Services Under Pressure

Over the last few months I’ve been made aware that specialist hospital services are struggling to meet the demand in the delivery of bone marrow transplants, across the country.  The situation is most dire at Auckland hospital, where transplant services are being pushed to the limit.

I first wrote about this issue in October last year, and since then it looks as if the situation has worsened.  This is very concerning as unlike hip operations which can be rescheduled bone marrow transplants save lives!

We are aware that some patients are experiencing longer waiting times to have their transplants, as there are not enough beds in Auckland hospital.

In some cases patients are also being relocated to other city centres for their transplants.  This means they are in hospital, often for long periods of time, isolated from their families and friends.  This is additional stress that patients don’t need.

This is despite the best efforts of the dedicated haematology team at Auckland hospital, who do their utmost not to relocate people unless there is no other option.

We are aware that the staff are under huge pressure. it is becoming increasingly difficult for them to find enough beds for patients and a huge amount of rescheduling must be undertaken by specialist nurses and doctors to ensure transplants occur.  This rescheduling is also having an impact on stem cell collection slots, which also need to be managed very carefully.

There’s a risk that the situation in Auckland Hospital has the potential to flow on to other haematology treatment centres around the country, eventually also pushing their services even further under pressure.

A key part of what the LBF does is to work on behalf of patients. We intend to address this issue with DHB staff and the Minister of Health Tony Ryall and ask for some solutions.  We will be watching how this progresses over the coming months and will keep you up to date on our progress.

September 16, 2011

Raising awareness about lymphoma

This week has been a big week at the LBF, as we marked World Lymphoma Awareness Day  on September 15.  This is a really important event on our calendar as it provides a fantastic opportunity for us to raise awareness about  lymphoma, an insidious and prevalent form of blood cancer,  with close to 900 New Zealanders each year being diagnosed.

This year we had fantastic help from a range of patients who very generously shared their experiences to be part of our film project ‘Lymphoma, – my story’.  You can check these out on the LBF  YouTube channel.

These  films are such an important tool for us to raise awareness, as lymphoma really flies under the radar in New Zealand.  This is of real concern when you consider it is the most common form of cancer in 15 to 24 year olds, and the sixth most common form of cancer in New Zealand. In this country lymphoma kills as many people as melanoma every year.

So why is so little known about this cancer, compared to say prostate cancer and breast cancer which are highly placed in the consciousness of most New Zealanders?

The fact is that it’s somewhat challenging to get media coverage on lymphoma, a situation which is shared by our counterparts overseas.  There are many reasons for this.  The first is that very few people (the media included) realise that lymphoma is actually a serious form of cancer. This may have something to do with the fact that it was referred to as Hodgkins and Non-Hodgkins disease for so many years. Lymphoma is a relatively difficult cancer to understand, as it doesn’t affect a particular body part and is for the large part invisible.

Lymphoma is also not something that a prevention message can be linked to as it can’t be screened for, and we are still not really sure what causes it.   In saying this though, there is currently very interesting international research being undertaken by the International Lymphoma Epidemiology Consortium (InterLymph).  They have launched a series of films to discuss their recent research findings. The films can be viewed here. 

Despite these challenges, and the extra challenge of operating in a media space heavily dominated by the Rugby World Cup this week, we are committed to raising awareness of lymphoma among both the general public and GPS.  This will ensure that it is diagnosed correctly at an early stage. Diagnosis of lymphoma is often very difficult due to the fact the symptoms are similar to those of the flu.

We’ve been thrilled with the response to our social media awareness campaign which involved asking daily questions about lymphoma – ‘Know Your Nodes’, and sharing  patient stories. Our counterparts in France have also produced some really interesting and somewhat shocking advertisements to raise awareness in their country which you may be interested in viewing – see advertisement one  and advertisement two. (NB: for subtitiles click on the cc button).

September 2, 2011

Poukai at Whatapaka marae

This week I was honoured to attend a Poukai at Whatapaka marae in Karaka as part of the Middlemore Tissue Bank (MTB) delegation.  The Poukai is an annual series of visits by the Māori king, Kingi Tuheitia, to Kīngitanga marae around and beyond the Waikato region.  I was fascinated to learn that this tradition dates back to the 19th century.

The Leukaemia & Blood Foundation is a sponsor partner of the MTB, which has a really big job on its hands working to establish a comprehensive store of cancer tumour tissue for use in research.

We could not have been made more welcome by all and it was fantastic that representatives from the MTB had an opportunity to speak about their service at the Poukai as is really so important that Māori are encouraged and supported to donate tissue bio-specimens for research. This will enable researches to investigate the effects of current and potential new cancer therapies in Māori and Pacific peoples, of which we know very little about at the moment.

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.

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.