In 2011 the AIHW published the Chronic Kidney Disease in Aboriginal and Torres Strait Islander People (AIHW, 2011) report which contained some alarming statistics about the renal health of Indigenous Australians. The report found that Indigenous Australians develop end stage kidney disease (ESKD) at over six times the rate of non-Indigenous Australians and that Indigenous Australians were four times more likely to have chronic kidney disease as a cause of death. Further, 70% of ESKD cases in indigenous Australians occurred before the age of 60. At the time of that report diabetic neuropathy was the most commonly attributed cause of ESKD present in 60% of cases.
Recently Donna Ah Chee, CEO , Central Australian Aboriginal Congress, gave a speech at the launch of the Kidney Action Network, examining progress in managing this major health threat to indigenous communities and the work still ahead. Many thanks to Donna for allowing us to provide the full transcript of her speech below:
The stark reality of the numbers of Aboriginal people on dialysis here in Alice Springs is a constant and real daily reminder of the work that still needs to be done to address Aboriginal health disadvantage and Close the Gap in our life expectancy.
However, at the outset I think it is vital to acknowledge the very real health improvements that are now being seen in the prevention and treatment of chronic illnesses, the very diseases that have created this kidney disease crisis.
Since the beginning of the Primary Health Care Access Program (PHCAP) in the NT back in 2001, there has been a continuing improvement in life expectancy amongst Aboriginal people in the Northern Territory, primarily because of a decline in premature deaths in midlife caused by chronic illnesses.
The NT is currently the only jurisdiction on track to Close the Gap by 2031, if the current trend continues.
There is now much better access to evidence-based treatments, including medicines, than was previously the case. We have many more health professionals on the ground now. This has helped to detect renal disease early and slow its progression.
However it is vital that we do much more in terms of the primary prevention of renal disease in the first place, and this requires action to prevent the epidemic of obesity and diabetes.
I have just been to a national forum in Canberra on this issue, organised by Diabetes Australia. Congress made four key policy proposals to address the prevention of the obesity and diabetes epidemic:
- To re-establish the Primary Health Care Access Program, or PHCAP, so that the expanded primary health care core services model can be fully funded and so make further improvements in access to primary health care.
- To fund the key early childhood programs (ante-natal and for the first three years of childhood) that will help to ensure that all young people have good self-regulation and impulse control and will be more resistant to the development of addictions including fat and sugar
- To introduce an alcohol floor price, as cheap alcohol consumption is a major contributor to obesity and the inability to self-manage chronic disease
- The introduction of a 20% tax on glucose—especially on the glucose in sugary soft drinks—and fat, with hypothecation of the tax to ensure that the tax is used as a subsidy for fresh fruit and vegetables
We must get much more serious on the prevention of renal disease than we have been up to now.
However, there are now some early signs that for the first time the rate of increase in End Stage Renal Disease may have at least plateaued, as the number of new patients coming on to dialysis in the NT has declined slightly for the first time.
There are many reasons for this, but it is at least partly due to the real improvements that have been made in the NT health system, where a large injection of new resources have been allocated over the last decade in a planned way, according to need.
Unfortunately, in recent years many new resources have been allocated through competitive tendering. This form of funding allocation has been fragmenting the health system, and has the potential to slow down the gains that we have made up to now.
Also, the way that renal dialysis services are being delivered has not been part of this change process. We are largely stuck in the same “centre-based” approach that we have had for decades, with patients being given little option other than to move to Alice Springs and other major centres to go on to dialysis.
It should be acknowledged that there have been efforts to get some dialysis patients home on ‘self-care’ home haemodialysis, but only a very small proportion of our people are currently capable of achieving this.
Congress has advocated for many years for the option of nurse-assisted home-based haemodialysis for all of the reasons outlined in the Central Australian Renal Study, which was completed in 2010.
Congress recognises the work being done by the Western Desert people to help themselves deal with the high levels of kidney problems in their communities. They have led the way in taking initiatives to ensure that there are better options, including nurse-assisted home haemodialysis. Where government have failed to deliver, Aboriginal people have had to try to fill the void with their own funds.
The Western Desert Nganampa Walytja Palyantjaku Tjukaku remote area dialysis services organisation has shown that nurse-assisted home haemodialysis is not only possible, but also very highly valued by the community. This vision needs to be built on by using existing government resources differently; dialysis needs to be decentralised, and provided out bush where people live. It is very likely that this option is not only better but also cheaper. It is not acceptable that in the absence of this option some of our people are choosing to die at home without life-saving dialysis treatment.
There have also been some encouraging signs recently in terms of improved access to renal transplantation for Aboriginal people, with more than 20 transplants in the NT last year. There is still a lot more improvement needed in this area because renal transplantation is the definitive treatment for End Stage Renal Failure, and allows people to live a full, active and healthy life once more. We know that a lot of dedicated people are working hard on this issue.
There has been a lot of work done to bring kidney disease in remote communities to the attention of governments. This work was distilled in the 2010 Central Australian Renal Planning Study.
Congress is very concerned by the refusal of the state and Territory governments to engage with the key recommendations of the Renal Planning Study. This is why we need stronger advocacy and political action. This is why we need the new Kidney Action Network.
There has been a failure to recognise and act on the fact that Alice Springs has to be the hub centre for delivery of services to people in most of the tri-state (NT-SA-WA) cross border desert areas, which rely on Alice as their natural, geographic, social and cultural regional centre.
The failure to provide serious support to the ‘Alice Springs hub centre’ concept means that many patients are still forced to move to Adelaide and Perth, which are too far from their families, communities, social life and cultural necessities.
Congress fully recognises the impact these planning and infrastructure failures have on individuals, their families and their communities. Congress also recognises that tri-state planning is not something that has ever been done well. This is a big challenge for our complex, federated system.
For the sake of the End Stage Renal Patients across the whole of central Australia, we have to get this tri-state planning right and ensure people are provided the right type of renal replacement treatment in their home communities. This must include nurse-assisted home haemodialysis. We also have to address the obesity and diabetes epidemic through effective prevention. We need to all join together through this new Network and make sure all the necessary changes are achieved.
The situation for the Aborigines of Australia is quite similar to the African Americans of the US, although the factor is 5 for them, instead of 6 (i.e. 5 times higher incidence of dialysis vs. whites). In African-Americans, the “African gene” turned out to be the ACE deletion/deletion (D/D) genotype, which leads to a higher level of ACE, the angiotensin I-converting enzyme. ACE can be inhibited with an ACE inhibitor, a common blood pressure drug. It would be interesting if it’s the same genomic variant in Aborigines.
In African-Americans (and whites, and Hispanics), it has been possible to prevent 90% of dialysis using high-dose ACE inhibition. I’d love to see if we could eliminate the need for dialysis in Aborigines (and the rest of Australians) using the same approach. Contact genomed.com or nodialysis.com for more information.
This needs a new ‘Crockey’ category because it is a load of Crock.
What the article is saying is:
1. There are lots more jobs for Whites here. Primary health care, social security, law enforcement, other public services all contribute to the statistic that in the NT, for every Aborigine on welfare, there are 5 Whites dependent on them staying on welfare. The economy couldn’t afford to lose all those jobs for non-Aborigines
2. There’s lots more money for pharmaceutical companies. Apply here for taxpayer-funded opportunities. Besides, public health care will grow even more from treating the side effects of all those drugs.
3. Alcohol is not the problem. The lack of opportunities and the alienation of Indigenous people in their own country is the problem. The Howard Government introduced the Intervention which has compromised many established, viable Indigenous businesses and even stopped the public float of an Aboriginal owned and run mining company. It closed down at least one preschool run by local women because they ‘needed’ a White professional to do what had been done far better for years. I could go on for pages on this. Next, there’s the smart Howard trick of stopping people moving from a place of lower unemployment to a place of high unemployment by making Social Security payments dependent on looking for work where work exists. This might sound sensible but jobs for Aborigines are very limited anyway (more pages on this possible). The net effect is that traditional owners of Country are dislocated from their Lands and ceremonies are not done which maintain their legal Land Rights claims. This means in time, the Government will be able to stop all claims on areas currently under claim or yet to be claimed.
4. A tax on glucose??? The problem is sucrose in sugary drinks AND in fresh fruits and vegetables these days. There’s 3% MORE sugar in a mango than in the same weight of Coke or Pepsi. Then there’s the classic comment that early childhood programs will help to ensure that all young people have good self-regulation and impulse control and will be more resistant to the development of addictions including fat and sugar. Spare me! We all have instinctive taste drives for fat and sugar. That’s how we got to where we are today. We also have an instinctive drive for micro-nutrients including antioxidants and this is the clincher. We are all out hunting for antioxidants. We eat loads of rubbish foods hoping beyond hope that we’ll find the antioxidants we need to survive long term. The result is obesity and a host of nutritional diseases including diabetes simply because our food is grown by factory farmers intent on producing addictive (sweet and fat) foods that suit the distribution chains, not for our ideal nutrition.
The answer is too simple to appeal to politicians wanting to funnel money to the public service and Big Pharma.
Let me describe an initiative currently being set up.
It is based on the fact that from the age of 5, we recommend toys, events, experiences, even people to one another. Think of the last time you not only recommended say, a movie to a friend and they came back to you and thanked you for it. They enjoyed the experience as much as you did and you shared a coffee, a drink or a meal talking about the mutual appreciation of the movie. How did you feel about the way your friend said thanks? It’s a good feeling isn’t it?
So we are using this system to build a referral business with the product being recommended being based on nearly a dozen Australian wild foods and in all, 27 different whole foods which make up an extremely rich source of antioxidants.
It is a food so we can’t make any health claims. However, antioxidants have been shown to reduce insulin resistance in our cells and help the way sugars are handled in the body. It is the high levels of insulin and sugar in the blood that is core to the diabesity problem today.
The net effect is that not only do we have Aborigines sharing the knowledge of how to get healthy explaining how carbohydrate craving disappear, energy levels rise, fibre intake goes up and a general feeling of well being returns.
Secondly, money can be earned even in remote communities and self confidence and pride can be re-built for those from a welfare culture.
This is starting to become a movement so let’s see if it can make a difference nationally. It might take a little time but when you are part of the World’s longest living culture, a year or two out of 60,000 is relatively quick.