Leukaemia & Blood Cancer New Zealand

Being a chief executive officer (CEO) comes with many responsibilities as Pru Etcheverry, CEO of Leukaemia & Blood Cancer New Zealand (LBC), can attest. “Every day is different but key responsibilities are income generation and financial management, leadership, brand building and positioning, service delivery for patients and families, and looking at organisational sustainability,” said Pru.

Pru has been CEO of LBC for 11 years. LBC was started 37 years ago. Initially, the organisation’s focus was on providing research funding for haematology initiatives. However, in 2001, LBC’s mission was amended to also provide patient support. LBC provides patient support for all blood cancers.

“Under patient support comes support, information, advocacy, awareness and everything and anything of what that means to patients. So, those are very big additions to what the organisation does,” she said.

LBC has grown to support this work with a staff of 18 from three when Pru first joined the organisation.

Pru is also involved in a number of other advocacy and patient support initiatives. One of them is CANGO which stands for Cancer NGO (non-governmental organisation) which Pru currently chairs.

CANGO is an alliance of eight cancer charities that work together to present a united voice to the Ministry of Health, Cancer Control New Zealand and district health boards on issues affecting New Zealanders.

“It’s been a really good grouping. We also try to ensure that we are supportive of and not competitive with each other’s fundraising and awareness efforts,” she said.

Another organisation Pru is involved with is Access to Medicines Coalition. This coalition believes that the New Zealand government has a responsibility to all New Zealanders to provide a funding system that results in increased access to needed therapies. Access to Medicines Coalition comprises patient advocacy groups for all diseases.

New Zealand Bone Marrow Donor Registry

LBC also operates the New Zealand Bone Marrow Donor Registry (NZBMDR).

“This registry facilitates searches for a donor when a patient needs a transplant in New Zealand,” said Pru. The New Zealand registry, like all registries, collaborates with registries around the world as donors may come from anywhere.

To facilitate the recruitment and matching of appropriate bone marrow donors, two staff members are based at New Zealand Blood.

“When donors come in and give blood or plasma, a conversation could be had with them if they fit the criteria to be bone marrow donors,” said Pru. An appropriate donor is someone who is aged between 18 and 40 years.

The goal of NZBMDR is to have 75 per cent of those in the registry of Maori or Polynesian descent and, while this target has been surpassed and there are 10,000 donors in the registry, what really matters is finding a match when it’s needed. New Zealanders have access to more than 23 million global donors, but those from other ethnicities are less likely to have a donor available. Hence, the need to acquire donors of Maori and Polynesian descent as well as other ethnic groups.

“People can still die waiting for a transplant if they don’t have a match, but increasingly now the donor metric for our Maori and Polynesian patients has equalled that of the rest of the population,” she said.

When there is no donor in New Zealand and one is found outside the country, it necessitates someone, usually a healthcare professional, flying to the hospital regardless of where it is in the world, collecting the marrow and bringing it back.

“So, it is literally a life and death situation. If we have two donors and one is in Australia and one in Europe, obviously we go for the one in Australia but it doesn’t always work that way as the best match is the most important criterion,” she said.

Importance of Effective Fundraising

Fundraising is an integral activity undertaken by most patient organisations and LBC is no exception. It holds a number of successful events throughout the year and raises most of its required funding from events and corporate donors.

“We have always deliberately tried to keep funding from the pharmaceutical industry extremely low for the reason that we are often lobbying for drugs – in the public arena or behind the scenes – and it’s important to be completely independent,” said Pru.

Pru noted that there are many other companies that while they may not have a logical connection to LBC, they want to get involved.

“There are hundreds of companies that could get involved and those that get involved love the opportunity of staff engagement,” she said. Among the companies supporting LBC are Suzuki, PriceWaterhouseCoopers (PwC), the latter who has been supporting LBC’s fundraising endeavours for about 10 years.

“We have the only New Zealand-owned insurance company – Fidelity Life – who has been supporting us for a number of years and they get very involved in our events, particularly their senior management team,” said Pru. Farmers, a New Zealand department store, is another strong and generous supporter.

To ensure successful campaigns, Pru said they need to be fun, easy to understand what they are about and what is needed. They need to capture peoples’ imaginations, be a bit different and not mainstream.

“I also firmly believe fundraising events are not for the faint-hearted. You don’t go into them if they are loaded up with costs and you need to achieve a certain amount to break even as I think that’s risky. If you can run an event with a low cost ratio that’s ideal,” she said.

Shave for a Cure

Shave for a Cure is one of LBC’s signature fundraising events. During this event, which has a dedicated week in April but can run all year, thousands of individuals, schools and businesses shave their heads in an effort to raise money for those diagnosed with a blood cancer or a related cancer. Funds raised from this event support the 10,000 New Zealanders living with a blood cancer or a related condition. For this year, as of April 16, 2,042 people have participated and NZ$1,364,000 has been raised. In 2013, NZ$1.4 million was raised. The event has been running for 14 years.

“It’s just so exciting seeing it unfold and seeing who takes part; it’s just really, really lovely,” said Pru.

People shave for different reasons: they may be shaving for someone they know, for the fun of it and to just get involved.

“A huge amount of people do it for somebody they are close to who has been diagnosed with a blood cancer,” said Pru.

Firefighter Sky Tower Stair Challenge

Another entertaining fundraising event is the annual Firefighter Sky Tower Stair Challenge. This year’s event takes place on May 17. The Sky Tower, located in Auckland, is the tallest free-standing building in the southern hemisphere with 1,103 steps that have to be climbed to reach the top. Not only do the firefighters climb the stairs, they also wear all their kit which weights 25 kg. 2014 is the 10th year that LBC is running the event.

Firefighters waiting to start

Firefighters starting the stair climb

“This year we will be running a record number of firefighters with 750 from about 185 brigades from around the country,” said Pru.

A great feature of this event is that the firefighters fundraise in their own community which results in greater awareness about the organisation and the cancers.

“The lovely thing is a lot of brigades come from around the country, some quite small rural areas where there are no high buildings to train in. It is both a physical and a fundraising challenge and they compete fiercely across both of those things,” said Pru.

And Pru knows something about the physical challenge as she did the stair challenge three years ago. “I think it’s the hardest thing I’ve ever done in my life,” she said. Not only did Pru climb all the stairs, she also wore all the gear that weighed a total of 25 kg.

Raising Awareness about Blood Cancers

To help raise awareness, LBC holds a week-long awareness campaign entitled Blood Cancer Awareness Week. This year’s event will run from November 3-9. While activities vary every year, they are primarily targeted towards the general public.

“The goal is to have a strong media presence that includes social media with a viral component,” said Pru.

In 2013, LBC ran a campaign entitled The Silent Treatment. The idea was to help raise awareness about an issue that people were not talking about – blood cancers. Those participating were asked to change their photo on Facebook by placing an X over their mouth, keep silent and write a post saying they were going silent so they would not be posting anything. At the end of the campaign, 4,500 New Zealanders had participated and their combined silence was 324,570 hours.

“The powerful piece of the campaign was the engagement in the campaign at 62 per cent and as a result of the campaign, we had a 58 per cent increase in our Facebook following that week,” said Pru. And, the campaign also resulted in people visiting LBC’s website and finding information. Pru anticipates doing a similar social media campaign for 2014’s event.

Education and Support Programmes for Patients and Families

Among the many services provided by the LBC is a patient support team. Comprising six registered nurses who have specialised in haematology, they perform a number of functions including helping patients understand their diagnosis, explaining to patients what will happen with the treatment they have been prescribed and providing assistance to those (including their families) who have to relocate to a bigger centre in order to undergo treatment. The nurses do not provide treatment advice.

While they do not do any actual nursing, the nurses will visit patients in hospital as well as their homes.

“People can also come and see them where we have regional offices,” said Pru. LBC has four regional offices. The nurses are part of LBC and are not funded by the government.

LBC runs education and support programmes and, in a given year, holds over 70 groups nationally. The events focus on all blood cancers not only lymphoma. Depending on the location in New Zealand will determine how specific the topic is.

“The smaller the area, the less specialised the group; the larger the area, the more specialised the group as there will be enough people attending to have a specific-disease session,” said Pru.

Events are held for children of parents who have been diagnosed with a blood cancer. These are run by a psychologist who is highly trained in the area.

“This is a really important group that we run every month and those children get a lot of benefit out of it,” said Pru. Children up to the age of 12 years can attend this event.

LBC is about to start running courses on mindfulness. Mindfulness is a state of active and open attention to the present, i.e., it means living in the moment and awakening to experience rather than letting life pass one by.

“We have been running them in Auckland and have found them to be immensely beneficial for patients and their families so we’re going to roll them out across the country,” said Pru. These courses run for eight weeks.

Impact of LBC on Lymphoma

Pru is encouraged that LBC is making a significant impact on lymphoma care in New Zealand.

“We cover all blood cancers and what we now have in place is the ability to run not only generic support or education meetings for haematology patients but also disease-specific ones in the larger urban areas,” she said.

The public awareness campaigns which for the last two years have made great use of social media have proven very successful for LBC in raising awareness.

LBC is involved in the Ministry of Health’s working groups for tumour standard evaluation. As part of the Ministry’s Faster Cancer Treatment programme, national standards have been developed for bowel, breast, gynaecological, lymphoma, head and neck, melanoma, myeloma, sarcoma, thyroid and upper gastrointestinal cancers.

Another way in which LBC makes an impact is through sponsorship of the Lymphoma Network Meeting of New Zealand, an annual event.

The purpose of this meeting is to review guidelines, research and the latest information from around the world and then develop guidelines. “The purpose of the guidelines is to ensure consistency in treatment across all centres,” said Pru.

Twenty people are part of this committee and include radiation oncologists, medical oncologists, haematologists and pathologists.

Education materials, diagnostic tools and continuing education programmes have also been developed for general practitioners.

While patient support, research, information and awareness are all important, advocacy is probably the most invisible and difficult to talk about but it is something that is done every day throughout New Zealand.

“It may be something small that LBC can take off a patient’s plate or something large that results in drug advocacy or even policy changes, just things that make it easier for patients,” said Pru.

Wishing LBC a very successful 10th annual Firefighter Sky Tower Stair Challenge! Also, many thanks to LBC for the wonderful work they do to help those with blood cancer as well as their families.

 

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