July 14, 2011

Complementary Therapies and Cancer

Over the last few weeks we’ve been busy hosting our Winter Workshop series with health professionals in Auckland, Hamilton, Christchurch and Palmerston North.

This year we’ve been fortunate to have Professor Shaun Holt as our guest speaker. Shaun is an Adjunct Professor at Victoria University, runs a clinical trial unit Clinicanz and is a Medical Research Fellow at the Medical Research Institute of New Zealand. He has conducted extensive research into the use of complementary therapies to treat cancer and his results have proved fascinating, if somewhat controversial in complementary medical circles.

Shaun is not afraid to tell it like it is. He has had well-publicised battles with both the chiropractic and homeopathic communities due to the lack of evidence that these treatments are effective in helping cancer patients.

His evidence-based research indicates that while around half of all cancer patients seek advice from complementary practitioners most people have limited knowledge of the kinds of therapies available and their effectiveness. This is a real concern and it is clear that there needs to be further education particularly among health professionals around this topic. This has been reflected in the feedback from the attendees at our workshops who have been really grateful to find out more about complementary therapy.

So can complementary therapies help, or do more harm than good when it comes to treating cancer? After listening to Shaun’s presentation it appears that there are some that are harmful, some that are helpful and some that are simply ineffective.

It is completely understandable that cancer patients will do anything possible to maximise their quality of life and chances of recovery but it does appear that at times certain complementary therapies can interfere with medical treatment. That is why it is really important that if patients are receiving complementary therapy they let their specialist doctors know.

There is, however, certainly a place for complementary medicine in the treatment of cancer. Shaun’s research indicates that around five per cent of complementary therapies have real merit in helping address the symptoms and quality of life of cancer sufferers. These therapies include acupuncture, aromatherapy, meditation, art therapy, yoga, certain herbs and vitamins.

What must be stressed however, is that complementary therapies can not cure cancer, and it’s really important that patients do not delay seeking conventional medical treatment which may save their lives!

It’s also really important that the media report the effectiveness of complementary therapies in treating cancer correctly so they don’t give patients and their families false hope. Nearly every week there is a new story about a new cure for cancer. Shaun brought up the example of Lyprinol. It was reported in media around the world that this extract from green-lipped mussels could kill cancer cells. While this did in fact happen in test tubes there was no evidence whatsoever to show that it could kill cancer cells in people.

The Winter Workshop series has been fascinating to listen to and a Shaun has been a great source of information for all those who attended.

We recommend that patients and families call their local LBF Support Services Coordinator if they have any questions regarding complementary therapies. We also have a copies of Shaun’s book ‘Complementary Therapies for Cancer – What works what doesn’t and how to tell the difference’ in our resource library, for loan.

July 4, 2011

Solid support is back in Christchurch

Great news – our Christchurch support office is up and running again!

Christine, our wonderful Christchurch Patient Support Coordinator, is back in her office for the first time since the February earthquake, after a few false starts, some repairs and a re-paint.

The LBF team extends our heartfelt best wishes to all Cantabrians, who have been so affected by the earthquake and ongoing aftershocks and disruptions.

Within our own community we have seen first hand the added anxiety and demands that have been placed on families during this difficult time. It is very demanding also to be relocated to Auckland and have the ongoing worries of family, friends and property back home.

We are supporting a number of patients and families who have had to relocate to Auckland for treatment. There is such increased stress for these families caused by relocating, when they are already dealing with the pressures associated with their condition and treatment. We want you to know that we are always here to help.

We so want to encourage all our patients and families who are in Christchurch to contact our Christchurch office and reconnect again with Christine; she’s looking forward to hearing from you.

We know that after the initial horror of the February earthquake that patients were keen to reconnect again and so it will be great that the premises are back functioning.

We have also extended a helping hand to our charity colleagues in Christchurch at Canteen who (for the second time) have found themselves without premises. So we are sharing premises for as long as it needs and until such time as they can find suitable offices.

The Leukaemia & Blood Foundations Christchurch office is located at: 68 Oxford Terrace.

June 14, 2011

PHARMAC not always a perfect model for specialised drug funding

Nearly nine years ago, New Zealand’s drug-buying agency PHARMAC, gave the all-clear to fund Glivec (also known as imatinib).

The funding of the drug has given much hope to Kiwis diagnosed with CML (chronic myeloid leukaemia), with most patients able to achieve remission. The course of this disease was markedly different 10 years ago when other medications were the standard treatment. At that time, most patients progressed to the advanced phase of the disease and a large number died as a result of CML.

At the time, Glivec was hailed globally as a new era in drug development, the first in a new era of targeted new medicines – and all these years later that has been borne out. Nearly all these New Zealandpatients treated with Glivec are still leading active and productive lives.

Whilst we at the Leukaemia & Blood Foundation are very, very pleased that there has recently been several drugs funded for haematology patients, the approval process for funding has – as is usual – been very much delayed, commonly over a number of years.

A lot of respected voices have been heard in the media recently applauding the PHARMAC model. We agree it is certainly true that the agency serves New Zealand very well with regards to funding generic drugs; and the supply of drugs for a mass market with an eye to containing costs. We do, however, note that there is a far less rosy picture for many patients who require access to high cost and highly specialised medicines. This applies to thousands of cancer patients and others with chronic diseases. We need a system that can factor in providing access to these types of medicines as well.

We readily acknowledge there is a finite budget, and careful evaluation, drug by drug, is necessary. What we are struggling with is the review system that is deficient and fraught with delays, often for up to years on end.

Whilst our organisation has no agenda to see PHARMAC dismantled, we do believe the model lets New Zealanders down in the area of these highly targeted specialised medicines. Patients are often not well served in getting timely access to drugs in the more specialised fields, such as the one in which we operate.

We also remain concerned with the complete lack of transparency in the current funding model. We know first-hand the challenges in extreme delays with access.  In the intervening period it’s very difficult to get information with regards to the status of a particular drug’s funding status. We also see decisions are often selectively evidence-based.

The treatment for patients our foundation supports, many of whom have life-threatening illnesses, is obviously extremely time-critical and most can’t afford such delays.  There is also sometimes a false economy at play, in the case of haematology patients often the lack of access to a pharmaceutical treatment can frequently lead to even higher costs of supportive care in a hospital setting, such as intensive transfusion regimes with platelets, red blood cells, immunoglobulins and other treatments.

PHARMAC will shortly announce the results of a review into the Exceptional Circumstances scheme which is also part of the equation, and very much so for smaller patient populations. Let’s hope that a sense of fairness and equity can be brought to bear, first indications from the consultation were that this was not the case.

Nine years on from PHARMAC’s funding of Glivec, we reflect on the effectiveness of its funding model for a small population. Glivec was called the silver bullet and, for those diagnosed with CML, it certainly has been. We’d love to see this success replicated throughout the system.

May 27, 2011

Our Heroes the Firefighters

Wow, last week we ran the Firefighter Sky Tower Challenge. Once again it was a fabulous day and huge success.

This event is now a New Zealand tradition and this year attracted 440 firefighters from over 120 brigades all around New Zealand. We welcomed brigades from north, south, east and west, with firefighters from Moerewa and Kawakawa in the north right down to Wanaka, Arrrowtown and you can’t get further south – without being in Stewart Island – than Riverton!

Last year I took part in the race in full firefighting gear, all 25 kgs of it, and I can honestly say it was the most physically challenging thing I have ever done.  It’s a pretty daunting exercise but an experience I treasure. So it is with renewed respect and awe to see the wonderful firefighters in action again on our behalf.

This year too it was particularly heart-warming to welcome the brigades from the Canterbury region, Kaiapoi, Lyttleton, Brooklands and Christchurch City Station.

It is very humbling watching as these community heroes lined up to storm up 51 flights of stairs – or 1,103 steps – to the top of Auckland’s majestic Sky Tower in their full firefighting kit and breathing apparatus which is seriously heavy!  As they raced to the top I caught the lift with my team and we waited at the top of the tower to see who would emerge first.  The anticipation was immense.  It might be a charity race but boy do they go for it!

Firefighters are some of the most respected and admired people in our communities and when you see the energy they pour into this annual event you can’t help but think these are also some of the most generous people on the planet.  They give so much back.

Leading up to the day the firefighters were very actively, and creatively, fundraising in their communities, the total will be over $175,000, an incredibly amazing result.

We’re so grateful for the funds raised. I’d like to give a special mention to Auckland Airport Rescue Fire who reached a new record of fundraising, a staggering $26,154! All funds raised will go towards our core services, allowing LBF to continue supporting patients and their families when they receive the life-changing diagnosis of a blood cancer.

And so to the results ….last year’s winner, Paul Gerritsen, was out to defend his title for fastest man but was edged out by his flatmate Josh Harrison from Otara Station with a time of eight minutes and 45 seconds.  These are simply unbelievable times and not achieved without incredible dedication to fitness and training. The fastest female title was given to Rebecca Kemp, from Onehunga Station, with a time of 14 minutes and nine seconds.

The Challenge is now in its 8th year and I would like to say a huge thank you to all our sponsors who helped make this event such a success: New Zealand Fire Service, SkyCity, Auckland Airport, St John, High Pressure Equipment and Otakiri Springs.

A huge thanks to all participants and supporters from all of us here at the LBF.

May 20, 2011

Shave11 – biggest ever

I am thrilled to report that Shave 11 has been our best ever. So far in 2011, we have raised more than $900,000, with more contributions coming in every day, and nearly 3700 people shaving. That’s more than double the number of participants of last year, when $650,000 was raised.

These are incredible results as Shave 11 (April 4-10) took place just weeks after the devastating earthquake in Christchurch. Interestingly, we had a large number of Shave events happening in the Canterbury region. The generosity of people in that part of the country is even more remarkable against the background of the ‘quake.

I want to extend huge and heartfelt thanks on behalf of patients and families to all who supported Shave, and to acknowledge everyone who got behind the earthquake appeal. The people of Christchurch need the ongoing support of the nation, so showing that solidarity was the right thing to do.

More schools were involved in this year’s Shave and over 100 firms took part including big corporates such as SkyCity and Westpac. This was all the more impressive as the country struggles to emerge from the recession.

A continuing trend we noted was the very high number of female shavees. About 1,200 women shaved, around a third of the total, which was higher than previous years.

Shave events were held around the country from Whangarei to Invercargill. Shave is clearly touching a nerve throughout the country, and our television advertisement featuring six-year-old Kole certainly helped spur action around New Zealand.

Media were very supportive. The New Zealand Herald came on board to host and promote a photo competition, the first time the country’s largest daily newspaper partnered with a charity on such a contest. The competition was a great success and we look forward to building on it next year.

Altruism is obviously alive and well in New Zealand. People sometimes feel powerless to help all the needy in their community, but Shave seems to speak to many of us. Shaving is something anyone can do, be they a school pupil or an office worker, whether they are closely connected to someone with a blood cancer or not.

We are, quite simply, blown away by the support we’ve received throughout the country. Kiwis are a very generous lot! A heartfelt thank you to all participants and supporters from all of us here at the foundation.

Our challenge will be to keep up the fundraising at the level we need for the remainder of the year. The 2011 Firefighter Sky Tower Challenge on Saturday May 21 is the next big event for us.