A Peek at the Leukaemia Foundation of Australia

One of the main goals of the Leukaemia Foundation of Australia (LFA) is to ensure people diagnosed with a blood cancer are aware of the support that is available to them.

“To achieve this, we set ourselves a goal of having face-to-face contact with 50% of all newly diagnosed patients across Australia which we did for the first time in 2014,” said Anthony Steele, Head of Blood Cancer Support at the LFA.

Prior to joining the Foundation seven years ago, Anthony was an oncology/haematology nurse and then became a nurse educator.

The LFA, formed in 1975, has offices in 22 locations across Australia with a staff of approximately 120 people of whom 50 provide blood cancer support. These people are all trained health professionals representing a range of backgrounds.

“We achieved our 50% goal by finding all the touch-points in the healthcare system that people with blood cancers are going to access in the course of their treatment,” said Anthony.

Touch-points that were identified included inpatient visits, talking to hospital pharmacists, visiting units outside of the oncology department such as day procedure units, talking to the discharge nurse and as many different people as possible within the hospital setting to make them aware of the services provided by the LFA.

“It was through being very persistent and building relationships that we achieved our goal,” he said.

LFA’s Objectives

The LFA’s objectives tie in with its tagline: Vision to Cure, Mission to Care.

“Our Vision to Cure is our research programme and our Mission to Care is the patient services we provide,” Anthony said.

In addition to ensuring face-to-face contact with 50% of all newly diagnosed patients with a blood cancer, other objectives of the LFA include educating people about their disease, treatment, side-effect management, how to live well with their disease and providing opportunities for them to meet others who have also been affected.

“We want to connect patients to the best services in Australia. We want to help them navigate the health system as we find a lot of people don’t even know what questions to ask to get help,” he said.

The LFA encourages people to learn about clinical trials and promotes participation in them. The LFA also funds research and has a national research programme.

Challenges in Accessing Therapies

One of the biggest challenges facing patients with a blood cancer in Australia is accessing needed therapies. As a result of these challenges, the Australian Senate is holding an inquiry to which the LFA has made a submission. To help with the submission, the LFA undertook a survey asking patients to submit their stories about accessing drugs outside of normal channels.

“By the time the survey closed on February 16, 675 people had completed it, and these survey findings formed part of our submission,” said Anthony.

Another issue patients in Australia can face is not having access to clinical trials.

“We’re a small population spread over a large area so it’s expensive to run clinical trials and, as a result, we don’t get access to a lot of them, particularly international trials. So, we want some strategies implemented to allow better access to trials,” he said.

The approval process can also contribute to delays in gaining access. All drugs receive regulatory approval from the Therapeutic Goods Administration in Australia. Once regulatory approval is received then the Pharmaceutical Benefits Advisory Committee (PBAC) determines if the new therapy is cost effective.

“There can be delays in different parts of the approval process. We want a process put in place that speeds it up,” said Anthony.

The LFA’s submission wasn’t focused on a particular therapy, but rather the situation in general.

“We do have some medications going through the approval process at the moment, such as ibrutinib, that we want access to but we don’t even have bendamustine,” said Anthony, who suggested that the LFA’s impression is that pharmaceutical companies get their new therapies approved first in countries with large markets where they make the most money.

Satisfaction with Healthcare

While patients may not have access to all needed cancer therapies, Anthony said that overall he was very happy with the way healthcare was provided in Australia.

“Australians have free healthcare so when drugs are available they are free or as close to free as you can ever expect. To have that, when in so many other countries people miss out because they can’t afford to pay, we’re really satisfied. The only thing we want is improvement in access to those therapies available in other countries,” said Anthony.

Results from the 2014 Patient Global Survey showed 53% of respondents from Australia had faced barriers to treatment.

“What’s challenging is that people want to access treatment next door to where they live. The nature of Australia, however, is that it’s a big and sparse country with expertise concentrated in major centres,” he said.

For those living in remote areas to obtain the expertise needed, they would likely have to move to a more densely populated area.

“I don’t see how else it can be done. If I needed treatment, I would want someone who’s had lots of experience and not a doctor who may have seen five cases of a particular blood cancer in their entire career,” said Anthony.

Education and Support Programmes

As part of the support provided to patients with a blood cancer, the LFA ran 658 education and support programmes in 2014. These sessions are organised by the LFA’s blood cancer support coordinators. Within each of Australia’s six states there is a state manager who ensures all the different topics that need to be covered in a given year form part of these sessions.

“The type of session determines who the speakers will be. If it’s about a disease or treatment, we’ll have a haematologist speak. We might have an allied healthcare speaker for supportive care topics and we might have a patient speaker who’s been through a particular experience,” said Anthony.

Sessions may be on a specific topic relating to lymphoma to which only patients with lymphoma would be invited. For general sessions on diet, exercising, managing finances or fear of relapse, then all patients with a blood cancer are invited.

The meeting location determines how many people attend. In a regional area it may be 12 to 15 people, in a rural area eight to 10, and in a metropolitan area about 20 people.

“We don’t recommend any more than 20 attendees as it’s very hard to share information in a larger group,” he said.

Accommodation for Patients

To help patients access the care they need, the LFA provides patients living more than 100 km away from the treatment centre with free accommodation in one of 61 fully furnished units available across Australia. While the accommodation is free and the goal is for patients to treat it as a home-away-from-home, patients pay for their own groceries and are responsible for meal preparation.

“We really value equal opportunity to access the best healthcare in Australia and we contribute to that by allowing people to stay free-of-charge at the accommodation we provide,” said Anthony.

In the past, some patients have chosen not to have treatment because it was too expensive to go to the city for their needed care.

“We can’t meet all of the need so we have a priority list. Not only do we want to help those living more than 100 km away but also those undergoing long-term treatment such as bone marrow transplantation, those with a disability or those needing a bit more support,” he said.

Overflow patients stay in motels and between the LFA and government support, the patient may only have to pay a small amount.

Patients can also stay with family living near the treatment centre and the LFA will provide some financial assistance.

“If patients have nobody, we’ll look after them. We support everyone; we never say no,” said Anthony.

Courtesy Transportation

Within metropolitan centres, the LFA provides courtesy transport for patients needing help getting to and from the treatment centre. There are 42 cars in the courtesy transportation system with each car being supplied by a sponsor. The cars are operated by volunteers who undergo training before becoming one of the LFA’s team of drivers.

“In 2014, our volunteers drove more than 1.3 million km helping patients with a blood cancer get to and from their treatment centre,” said Anthony.

Importance of Advocacy

When drugs are going through PBAC, the LFA may encourage patients to get involved to help write a submission explaining why the therapy should be approved.

“The PBAC is receptive to this approach. They look at what patients say has been their personal benefit and compare it with what the pharmaceutical application says about the drug’s benefits. If they marry up, it adds weight to getting the drug across the line,” said Anthony.

What usually holds up the approval process is the cost negotiation or the pharmaceutical company using a cost-effectiveness analysis that is not acceptable to PBAC.

“When that happens, the pharmaceutical company has to resubmit and that takes time,” he said.

World’s Greatest Shave

One of the signature fundraising events undertaken by the LFA is the World’s Greatest Shave. During this event, more than 150,000 people are sponsored to shave or dye their hair in support of Australians with a blood cancer and to fund research. This year’s event took place from March 12 to 15, 2015.

The idea for shaving off hair to raise funds came from a patient who had undergone treatment for a blood cancer. While there was much scepticism as to whether it would become a successful event, it has raised as much as AUD$20 million in a year. For the 2015 event, AUD$16 million has been raised to date.

“It’s a good fundraiser, it’s fun and it’s got connectedness. Even people who’ve been touched by other cancers get involved,” Anthony said.

In 2000, long before joining the LFA, Anthony had his hair shaved off, and he did it again in 2009.

“It made me feel I was contributing more than just financially; it gave me a sense of connectedness to the cause,” he said.

UGLY Bartender of the Year

Started in 2009, the UGLY (Understanding Generous Likeable You) Bartender of the Year is the LFA’s hospitality industry fundraising competition. Bars across Australia run non-alcohol-related events such as quiz nights or dart competitions.

“A lot of regional bars are very good fundraisers. They’re very community minded and they tend to really get behind this event,” said Anthony.

Since it started, UGLY has raised more than AUD$6 million. In 2014, more than 1,100 bartenders and venues participated raising more than AUD$1.3 million.

Collaboration Key

The LFA’s goal is to be Australia’s peak body for blood cancer.

“The way we do it is by being really collaborative with other groups rather than by being competitive. We work with all sorts of different organisations to try to reduce duplication to ensure that as much funding as possible goes to patients rather than a duplication of services,” said Anthony.

As the LFA does not receive any government funding, working with the community is key.

“All our revenue is from the community so we have a very community-centred focus. We’re closely engaged with our grassroots which entails a lot of communication to keep them engaged and letting them know that the work we do with them is making a difference,” he said.

A heartfelt thank you to the LFA for the wonderful work you do for patients with a blood cancer. Wishing you every success in your endeavours in 2015.

April 27, 2015

 

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