Sharing insights on unmet needs and aspirations of people with CLL | Leukaemia Foundation

Sharing insights on unmet needs and aspirations of people with CLL

Kathryn Huntley presenting at CLL Horizons 2019. 

The Leukaemia Foundation’s innovative CLL My Way trial and Cancer Concierge pilot program were presented at two international conferences in September.  

Our Head of Living Well, Kathryn Huntley, was a delegate at CLL Horizons 2019 – an international conference for organisations representing people with CLL. Held in Edinburgh (Scotland), there were representatives from Europe, Asia, Africa, Australia, and North and South America.  

And Dr Peter Diamond, the Leukaemia Foundation’s Head of Research, was invited to the 2019 Lymphoma Coalition Global Summit in Barcelona (Spain) – an opportunity for patient support organisations from around the world to come together to learn from experts, share their own experiences and brainstorm solutions to common issues.   

“We were fortunate to attend and present on our recent work of CLL My Way and Cancer Concierge,” said Kathryn Huntley. 

Background on CLL My Way and Cancer Concierge 

Kathryn and Peter told the story of how, in 2016, the Leukaemia Foundation embarked on a journey to better understand what people with CLL really go through, and how we, as an organisation, can better support them earlier in their journeys. 

“Immersing ourselves in their lives enabled us to uncover fresh insights and develop new ideas to truly make a difference to their lives in the future,” said Kathryn. 

“It was a harrowing journey at times, with raw emotions and vulnerabilities shared, as well as incredibly inspiring and uplifting messages.” 

CLL Horizons 2019 

Kathryn said delegates at CLL Horizons were very invested in the Cancer Concierge concept of there being one trusted source of support or referral to help people navigate the different aspects of living with CLL; from making treatment decisions, to getting on and living life with a CLL diagnosis. 

“Having an overview of our CLL program and our learnings provided many smaller CLL organisations with aspirational goals for implementation in their own countries,” she said. 

“There also was comradery in the knowledge that, regardless of country, health system and support organisation infrastructure, challenges around awareness of the needs of those living with CLL, limited referral to support, and inhibitions from the mentality of CLL being the ‘good cancer’, were universal.” 

 Kathryn walked away with was an immense gratitude for the Australian health system and access to drugs for Australians with CLL. 

“Sadly, you’d anticipate some countries would have reduced access, like those in Africa, which were very happy to have rituximab. But I was surprised to hear the plight of people in Ireland who can’t access oral therapy unless they travel to the UK, and now they have additional fears of the impact of Brexit on their access,” said Kathryn. 

“I also learnt that despite the challenges of access to treatment and costs, patient support organisations had a positive effect on the lives of those living with CLL, as trusted and supportive groups that were there to help.  

“As we strive to ensure all our people living with CLL are informed about their own personal circumstance so they can make informed decisions about care, I also learnt of the potential negative effects this may have.  

“One haematologist explained that “having a genetic risk prognosis still only describes the bell curve, not your position on it” and cited a case study of a person with all the markers suggesting a high risk of progression, and a need for treatment with a novel treatment to provide the best outcome. Yet, 12 years on from this diagnosis, that person’s CLL hadn’t progressed, but all that time they had known they were very likely to. Had this knowledge and enhanced fear robbed them of their quality of life?  

“Equally, many people with CLL who were at the conference spoke to me of the impact of being informed.  

“When their CLL progressed, they were “frozen” in their decision-making as they continued to weigh up which treatment option would give them their best outcome and have the least effect on their everyday wellbeing.  Some even wished they “didn’t know so much” or “were given a clear path”,” said Kathryn. 

“As a collective, the group is developing actions from this meeting in the area of advocacy for people living with CLL and I look forward to sharing these with you and inviting you to contribute to these actions.” 

2019 Lymphoma Coalition Global Summit 

Dr Peter Diamond, left, with Asia-Pacific representatives at the 2019 Lymphoma Coalition Global Summit. 

At the Summit, Dr Diamond, like Kathryn, presented the work being done by the Leukaemia Foundation to support people living with CLL, which was well received and was attributed as “giving a new perspective to participants on what you can do with good data”. 

Dr Diamond also discussed the Leukaemia Foundation’s recently launched State of the Nation: Blood Cancer in Australia report. 

“This generated lots of questions and information around how we got to this point where we could pull this information together, and how other countries and organisations like the Lymphoma Coalition could work with us to achieve our goal of Zero Lives Lost to Blood Cancer by 2035

From other Summit presenters, Dr Diamond heard about the care of older patients and what tools are being used now to determine what treatments are appropriate. 

“Increasingly, these assessments aim to determine an individual’s biological age compared to their chronological age,” he said. 

“Two people of the same chronological age, say 75 years old, could have significantly different biological ages that are determined by other health factors. And those with a low biological age may be eligible for more intensive treatments compared to those with a higher biological age.” 

Another presentation, on the burdens and challenges of clinical trials, covered the measures being taken to increase access for a greater number of trial participants. Also, what is being done to increase ‘patient voice’ in clinical trials. 

“There’s a growing movement for greater patient voice input to clinical trials at the design stage, where suggestions can influence trial design,” said Dr Diamond. 

There were opportunities at the conference for representatives from different regions to get together and discuss issues specific to them.   

“The Asia Pacific breakout session had representatives from Australia, New Zealand, Hong Kong, Korea, China, Japan and India. 

“Results of the last Lymphoma Coalition Global Survey were analysed, common advocacy areas discussed, and a proposal was put forward to initiate an expert advisory panel of experts from the Asia Pacific,” said Dr Diamond.   

An opportunity to host a patient advocacy forum alongside a scientific meeting also was identified and discussed, and preparations are underway by the Lymphoma Coalition for the next global survey, in 2020.   

“The Leukaemia Foundation will actively encourage Australians who living with lymphoma to participate in this global survey,” said Dr Diamond. 

Last updated on October 29th, 2019

Developed by the Leukaemia Foundation in consultation with people living with a blood cancer, Leukaemia Foundation support staff, haematology nursing staff and/or Australian clinical haematologists. This content is provided for information purposes only and we urge you to always seek advice from a registered health care professional for diagnosis, treatment and answers to your medical questions, including the suitability of a particular therapy, service, product or treatment in your circumstances. The Leukaemia Foundation shall not bear any liability for any person relying on the materials contained on this website.

Share this page