Patient Power

This has been a big year for advocacy. In haematology, there are so many unfunded drugs, unfunded new technologies, services under pressure and other issues in haematology that directly impact patients.

We have written a document and circulated it widely to Ministry of Health, Cancer Control New Zealand and other relevant parties. We remain with the same theme, that we believe blood cancers are sitting well below the radar of practically everyone.

Everyone; from members of the public having low awareness, to the health agencies and DHBs who we don't think are placing enough priority on this, and to the media paying scant attention to these prevalent blood cancers.

Time for this to change.

As mentioned in my May posting, stem cell transplant facilities remain under extreme pressure. We are delighted to say that the issue is under serious consideration by the Ministry of Health and in Auckland by the DHB. The important thing here is that it be treated as a key priority and doesn’t slide to the bottom or completely off the list. It is clear new investment is needed and we will be keeping active on this.

Last weekend we held our first-ever Blood Cancer Patient Forum. The one day conference was so well attended by patients and families we are still in amazement.

We began planning for this 20 months ago when we learnt that the Australasian haematology meeting was to be held in Auckland. It was a superb opportunity to leverage the international and local expert speakers who would be coming to town.

We would have considered this a successful undertaking if 120 people had attended but with several registrations on the day there were around 220 people there. It was an ambitious undertaking with five different cancer-specific concurrent streams, advocacy and biology of blood sessions, all were well attended.

Most gratifying of all was to see that patients travelled from as far away as Christchurch to attend and from all corners of the North Island. It certainly highlights the need for this kind of meeting.

Don’t underestimate patient power.

Where to next when the resources are so stretched?

We are getting worried that the increasing incidence of blood cancers in New Zealand – specifically lymphoma - is having an impact on our health system. One such serious impact is on specialist hospital services which are currently struggling to meet the demand in the delivery of bone marrow or stem cell transplants*.

Many blood cancers and conditions can be successfully treated with a bone marrow or stem cell transplant. Specialist treatment of this nature is only offered at tertiary treatment centres around the country - there is only one in Auckland.

Currently, due to the increased numbers of patients requiring specialist treatment, these services are under immense pressure. The incredibly hard working and dedicated specialist team of doctors, nurses and other health professionals are stretched and extremely under-resourced. We believe this is reaching a very concerning level at Auckland Hospital in particular, with transplant services being pushed beyond the limit.

Several patients have had to relocate out of Auckland in recent weeks to undergo their transplants in another centre around New Zealand. This is despite the best efforts of the treating team, who do their utmost not to relocate people unless there is no other option. Clearly, this scenario adds a further and very unwanted dimension of stress for patients and their families.

If this issue was to occur on a larger scale then the problem will simply spill into other (already busy) haematology treatment centres around the country, eventually also pushing their services even further under pressure.

Our concerns are that if this service in Auckland comes under any further pressure then some might think to ration this service.

We will be keeping up to date with the situation in the treatment centres about how this issue is being managed, and hope that greater investment might quickly be made in solutions addressing this issue as, without fairly urgent intervention, it is not going to go away.

*A allogeneic bone marrow transplant, also known as (haematopoetic) stem cell transplant is a medical procedure transplanting bone marrow/stem cells from peripheral blood/or an umbilical cord from a donor, to a recipient. Patients with blood cancers such as leukaemia, lymphoma and myeloma as well as other non-malignant blood conditions benefit by allowing physicians the chance to aggressively treat the abnormal blood cells and replace with healthy bone marrow from a donor. Transplants may also be autologous using a patient’s own stem cells.

Baldly speaking

What to say! Shave Week is just behind us and there are still hundreds of people signing up to lose their hair and fundraise. We so hope that this will be our biggest year ever.

Having shaved my head a few years back for Shave for a Cure I can personally attest to it being a very significant moment in my life. I shaved in honour and memory of a friend who had lost her battle with cancer and thus it was my personal dedication to her. I remember being absolutely blown away and very humbled by the incredibly generous support of those who helped me with my fundraising.

I know that will be the experience of those who have signed on to shave this year and I wish you all the best. A heartfelt thank you for shaving and also to the wonderful people who have donated to support your shave and our work.

On the rise.

The 4th of February 2010 was World Cancer Day. There was huge pick up globally on this in the media, with much of the attention on prevention of cancer focusing on vaccines and lifestyle, and good progress in the understanding and fight against cancer.

Around the same time in New Zealand the Ministry of Health released a report on cancer projections to 2016. The very good news from this report is the stabilisation in the incidence of many cancers in New Zealand. But the bad news, is the lack of change in blood cancer numbers, which along with thyroid cancer, were singled out as showing a projected steady rise in incidence. This is particularly evident for lymphoma, a cancer of lymph nodes, where the projected increase is greater than 10% over the next ten years.

Investment in research, along with better quality and more timely data capture has led to major improvements in understanding of many cancers and correspondingly, this has lead to prevention messages and treatment advances.

It is clear, however, that more research and resources need to be invested in the study and treatment of blood cancers such as leukaemia and lymphoma where causes are less clearly understood. Until the disease is better understood and the causes identified we cannot work on messages for prevention. Screening in lymphoma is not useful, further highlighting the need for lymphoma awareness campaigns targeted at GPs and the general public.

To compound the issue there is a woeful lack of accurate data on lymphoma in New Zealand. The New Zealand Cancer Registry data is running five years behind and then only capturing incidence and mortality data and nothing in between. Also, there are discrepancies in lymphoma data capture with different classifications in use between the reporting hospitals who are using the latest WHO classifications and the New Zealand Cancer Registry which are not.

Because blood cancers have not been on the radar of decision makers there are many downstream effects on patients and their families, including, a lack of sufficient bone marrow transplant facilities, a lack of timely funding for new medicines, and limited access to modern imaging technology such as PET scanning in the public sector. Put in perspective, more New Zealanders die of lymphoma alone than melanoma!

We are serious about raising awareness so this gets taken seriously and more resources are allocated for the battle against lymphoma.

'First Day Back'

Ooh ‘First day back’, it is always said in hushed tones to those coming back from their Christmas holidays. The longer the break the more reverentially it is said. ‘Oh sympathies’, ‘oh you poor thing’, blah, blah, blah…

Actually after having a great break with plenty of sun, sand, sleep-ins and Sudoku with batteries fully recharged it is great to be back. Things are still relatively quiet with plenty of Kiwis still away or themselves only just settling in to their first week back - it still really does hold that New Zealand largely does shut down over Christmas and summer. So it is great to be back and meet 2010 head on. I am confident we are in for a positive year and personally I am looking forward to working with our great team to embark on our work this year.
Happy New Year Everyone.

Where did it go?

I know it is a commonly voiced sentiment at this point in the season, but, wherever did the year go? Time seems to have once again flown by. However, when I look back on the year there has been just so much achieved by the team here. We've achieved what we set out to do and more, and we've covered a lot of ground with a number of new services and programmes launched, an increase in advocacy and awareness work, and more patients and families than ever in touch with the Support Services team.

Certainly it is good to be at this point in December with only four more sleeps to go until Christmas. It is great to reflect on those we worked with this year, both in terms of those we support and those that support us to make it all possible.

I thank my wonderful team of LBF staff and also a big thank you to our trustees and dedicated volunteers.

I am looking forward to the New Year to come, wishing everyone a safe and wonderful holiday break and every good wish for 2010.

Enjoy!

This needs to be taken seriously

World Lymphoma Awareness day fell in the middle of last month. We at the LBF mark this day by our many activities directed at raising awareness of this little known, but increasingly prevalent cancer.

We sure do have our work cut out for us in terms of raising awareness. Knowledge about this cancer does need to improve.

And the attentiveness needs to be raised at all levels. The public need to know when to take action with persistent flu-like symptoms they may be experiencing. GPs need to recognise, or at least be suspicious of this cancer and have lymphoma on their radar. Policymakers in health need to have information about this cancer in their sites so that cancer control strategies can be worked on. Namely, quicker diagnosis, funded access to innovative and highly effective treatments, access to diagnostic, staging and monitoring tools such as PET* scanners, we still don’t have even full access one of these in New Zealand … Australia has 12.

So what is the upshot of things as they stand? Combined, the blood cancers -leukaemia, lymphoma and myeloma - and closely related conditions number around 2,200 newly diagnosed patients each year. This is very close in number to cancers that have a high public awareness factor to them such as breast, prostate and lung cancer, regrettably bowel cancer is leading in this numbers race that no one would want to be in.

Some New Zealand lymphoma facts
- lymphoma is the most commonly occurring cancer in 15-24 year olds
- more people die of lymphoma every year than melanoma
- lymphoma is four times more prevalent than cervical cancer
- lymphoma is rising in incidence in as it is in most western countries
- lymphoma alone is the 6th most common cancer

So why is it such a challenge to get this into the consciousness?

Well we are one of the lesser known, and smaller, health not-for-profits. This is clearly not determined by the size of the issue we deal with. Our challenge is to increase knowledge about these cancers and conditions so that the issues that surround them will be taken as seriously by health authorities and those that can affect outcomes for patients.

*positron emission tomography