Waiting for Australia’s ‘silent disease’

By Ellen Ebsary.

The number one cause for hospitalisation in Australia is not road accidents or injury. Despite it representing over 80 per cent of admissions and 10 per cent of deaths in 2011, it is an uncommon discussion in mainstream Australian media and culture. Kidney disease is known as “the silent disease” for a good reason – its prevalence and impacts are not well known. With cases of kidney disease projected to rise significantly over the next decade, health professionals are desperately working to improve its awareness and treatment.

Chronic kidney disease, the loss of kidney filtration capacity, has a significant impact on the public health system and over one million Australians. One in ten Australians show biomedical signs of chronic kidney disease throughout their lives and over 11,000 received kidney replacement therapy for their condition in 2013. Kidney dialysis is consistently the number one cause for hospitalisation in Australia and accounted for over $4 million of Medicare benefits in 2014. It comes at a significant financial strain on individuals, costing between $50,000 and $100,000 annually. Dialysis is often the only option for people when a diagnosis is made as up to 90 per cent of kidney function can be lost before any symptoms arise. Requiring four to five hour sessions three times a week, the transition into a lifestyle involving dialysis is jarring and sudden. This impact and physical complications of nausea and fatigue make the emotional trauma of kidney disease crippling for thousands of Australians and their families.

Kidney dialysis is an unwanted and in many ways unnecessary burden on Australians and the public health system. Kidney transplantation as an alternative to dialysis makes a world of difference, eliminating much of the physical and financial complications. A paper published in the Nephrology Nursing Journal analysed 16 studies from across the world to compare the quality of life of people on kidney dialysis with people who received transplants. It found the average person after a renal transplant had a better quality of life than 72 per cent of those on dialysis.

The Australian Organ and Tissue Authority co-ordinates organ donation in the country and deals predominantly with an overwhelming demand for kidney donations. DonateLife Queensland Donation Specialist Nurse Danielle Upson said people with kidney disease account for almost 80 per cent of those on waiting lists in the state. “There’s still about four years waiting time for people who need a kidney,” Ms Upson said. “One to three people die every week waiting for a transplant that never comes.” While she said Australia’s organ donation rates were the lowest in the developed world, there have been significant improvements. “There’s been a 50 per cent increase from 2009 to 2015 but we’ve still got a long way to go,” Ms Upson said.

Kidney disease prevention
Kidney disease is expected to rise significantly over the next decade. Credit Steve Davis/Flickr

The performance of DonateLife, a branch of the Organ and Tissue Authority, came under scrutiny in a Community Affairs Legislation Committee in February. The Australian Labor Party raised concern that the DonateLife Queensland 2014 performance report revealed a 3 per cent decrease in the number of deceased donors from 2013 with New South Wales, Queensland and Western Australia accounting for a 7.7 per cent decline. The Organ and Tissue Authority Chief Executive Officer Ms Yael Cass said while the number of donors declined there was an increase in the actual number of organs donated due to an increased organ-per-donor ratio.

The Australian Labor Party maintain that the decrease in numbers of organ donors is to blame for lack of training in DonateLife clinicians responsible for communicating with the families of deceased donors. Australian Labor Party Senator Jan McLucas outlined this reason undermined the Labor Party’s stance against the government’s plan to amalgamate the Organ and Tissue Authority (OTA) and the National Blood Authority (NBA), which separately co-ordinate organ donation and the supply of blood products. “We need to retain the Organ and Tissue Authority as a separate entity from the National Blood Authority,” Ms McLucas said. “We need to have an organisation that is absolutely focused on ensuring that our clinicians are trained in the best way that they can be.” A 2012 report published in the Australian Health Review supports the presence of DonateLife staff in hospitals as being integral to the facilitation of organ donation. The report outlines that largely due to lack of specialist staff, around half of all missed potential organ donors have treatment withdrawn in emergency departments without donation first being discussed with families.

The call from the Australian Labor Party for the Government to abandon the merger comes with the same message from the Senate Select Committee on Health’s first interim report.  The report stated strongly advised against the merging of the OTA and the NBA on the basis that it had the potential to reverse recent positive trends in the rates of organ donation in Australia.

The amalgamation is part of a goal of the 2014-2015 federal budget to save $50 billion from funding agreements with hospitals over the next eight years. While it is yet to be seen what impact the July amalgamation will have on major institutions, cuts across the board are already affecting Australians suffering from kidney disease. Kidney Support Network (KSN) Sunshine Coast Manager Daniel Rowlands said the organisation has had to “severely reduce” its facilities and programs due to a cut in funding. “A lot of the funding that we have has been reduced so we’ve had to cut back on our support programs,” Mr Rowlands said. “We used to have an office opposite the Nambour General Hospital…and now we’re just a one room in the Maroochydore Community Centre.” Mr Rowlands said this has had a significant impact on support programs. “We used to transport patients to and from the hospital, and we’ve had to drop that back and pass it over to Comlink.” While he says there are still national support networks available, patients will not get the same emotional support if the organisation can’t retain funding. “It will mean KSN will not be able to provide a more localised service,” Mr Rowlands said.

The need for political interest in addressing kidney disease is important now more than ever with the Australian Institute of Health and Welfare predicting a spike in the number of cases over the next decade. Its report on projections of end-stage kidney disease to 2020 predicts the number of people needing replacement therapy will increase by 60 per cent. A study published in Medical Journal Australia warns this increase will be largely due to an increase in diabetes as a primary cause of end-stage kidney disease. This outlines a need for an improvement in the lifestyles of Australians, not only for health reasons but due to the potential strain on the public health system. A Kidney Health Australia economic assessment predicts the increased cost of kidney disease will be between $11 and $12 billion. It outlines kidney dialysis will make up a significant sector of this cost and raising transplantation rates by 50 per cent would save $26 million over the next decade.

Increasing organ donation rates by such a substantial amount is not impossible, as outlined by an editorial in the Medical Journal Australia. Through appropriate policy, funding and awareness a campaign of the United States achieved a 20 per cent increase in donor per million population rates in just three years. The barrier to improved organ donation rates does not lie as much in stigma about donation as it does in poor discussion of the issue. A DonateLife survey revealed over 70 per cent of Australians express willingness to be organ and tissue donors, but less than 10 per cent of the population are registered donors. DonateLife Queensland spokeswoman Shelley Waller said this shows opportunities for increasing donor rates. “That behavioural change that we’re trying to bring about is simply a procedural thing,” Ms Waller said. “When we ask people, 94 per cent of people say that they would follow the wishes of their family member. It’s just a matter of when we survey people less than half have discussed it with their family.”

Increased discussion is integral to improving transplantation rates as deceased organ donation is dependent on family consent, even if that potential donor has consented on the organ donor register. As 61 per cent of people who are unaware of family members’ donation decisions would not feel confident to agree to donation should the situation arise, it is critical Australians express their position with both the register and loved ones. Ms Waller said raising awareness of the importance of this process each year during DonateLife Week has a positive effect. “Each time the register increases by thousands, during that week,. Ms Waller said. Ms Waller said DonateLife would continue to work towards raising organ donation rates to bring Australia on par with the rest of the world. “We definitely need to look at things in the future such as online registration, ways that make it much easier to connect…to do something about it.” 2015 DonateLife Week will be held from August 2 to 9.

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