Posts tagged ‘LBF’

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.

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 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.