Bill Handke’s wife, Jenny has suffered chronic kidney disease for more than 19 years, 16 of which she has been on dialysis: the last 10 years doing nocturnal dialysis at home. In this time Bill, has been actively involved in the broader social, medical and policy issues of this and similar diseases.
From 2003 to 2015, Bill was the President or Vice President of the ACT Consumer Committee of the Kidney Health Australia (KHA). In this role he was active in promoting kidney health awareness in the ACT and regional community; operational support to assist sufferers; developing policies relevant to the wellbeing of renal patients and their carers, and advocating those to the Australia and ACT Government Ministers. In similar vein, from 2009 Bill has been the ACT representative on the National Consumer Council of KHA: this body provides advice and the views of patients and their carers to KHA for it to then take forward to federal and state governments.
From 2010 to 2017, Bill was the “carer” representative on the National Home Dialysis Advisory Committee (to the Dialysis, Nephrology and Transplantation advisory body to COAG Health Ministers). This Committee, comprising nephrologists, nurses, allied health workers, patients, and Bill as a carer representative, advises federal and state governments on the significant advantages of home dialysis (better health outcomes for patients and lower costs to health budgets), develops and advocates policy approaches that would promote home dialysis as the primary mode of treatment.
In 2007, Bill was presented with the Operation Angel Award by the then Governor General, Her Excellency Quentin Bryce, on behalf of KHA for his work in supporting renal patients, in promoting kidney health and for his advocacy work to governments on kidney health policy.
Bill has also been active with Gift of Life Inc. (the Canberra-based organisation which is the primary community awareness-raising and advocacy group on organ and tissue donation and transplantation in Australia) where he has been a board member (including Vice-President and Treasurer) since 2005. Through its policy advocacy role this organisation has been responsible for some significant advances in organ and tissue donation and transplantation policy in Australia. As part of this, Gift of Life Inc organise the largest community public-awareness raising event in Australia during DonateLife Week – the annual Gift of Life DonateLife Walk around Lake Burley Griffin each February. This promotional activity is opened by the Governor General and federal and ACT Ministers.
In 2009, Bill Handke received the ACT Chief Minister’s Award for his work in promoting organ donation and in developing new policy approaches to increase organ donation and transplantation.
In 2017 Bill was awarded an Order of Australia his service to community health and to the environment.
In 2014 Bill was named the Environmentalist of the Year while in his career as a federal public servant he received 3 Australia Day Awards for High Achievement.
Nicki is a patient partner, physiotherapist, and a PhD candidate at the Sydney School of Public Health, The University of Sydney. In 2014, Nicki commenced dialysis and was fortunate to receive a living donor kidney transplant from her brother. Her research focus is on access to dialysis and transplantation services for rural and remote patients in Australia. Nicki has given several invited presentations, including at the Global Health Policy Forum at The World Congress of Nephrology on “Quality, Sustainability and Equity of Care: a patient’s perspective.” Nicki is also a co-chair of the BEAT-CKD Consumer Advisory Board and is a Steering Group member of the Standardised Outcomes in Nephrology (SONG-GN) initiative, which aims to develop core outcomes for people living with glomerular disease. Most recently Nicki has been chosen as a finalist for the Volunteer of the Year – Individual Award in the 2019 NSW Health Awards. Nicki lives in Armidale NSW where she has founded a kidney support group and loves to grow roses in her spare time.