Posts tagged ‘blood cancer’

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.

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).