The Ballad of Billy The Kidney

Dialysis in the Australian outback

Recently in this blog I discussed the situation of public dialysis facilities in Fiji.

Lest I be accused of pointing the finger at allegedly less-wealthy nations, allow me to shame-facedly report that my own wealthy nation of Australia has issues in access to dialysis.

The problem of dialysis access in the outback is discussed in this item from ABC [Australia] News.

This access necessarily affects the health of indigenous Australians, who make up a disproportionate number of Australian dialysis patients.

It is a national disgrace that Australians in remote areas have these difficulties in dialysis access, and that indigenous Australian continue to have such severe health issues.

• Sara Everingham, Dialysis policy "like sending him to Mars". ABC News Online, 4th December 2009

• Radio broadcast version of this story [link to MP3 file]

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UPDATE 15th DECEMBER 2009:  I have re-read this story, and realise that the distances involved might have been missed by international audiences.

If you lived just over the state border from the Northern Territory, and you found that you have been shut out of dialysis facilities at Alice Springs by the Northern Territory Government, and you were asked to travel to Perth or Adelaide of Kalgoorlie to dialyse, then you would have to do a journey that is roughly equivalent to:

• San Francisco to Chicago
• London to Tbilisi in the Republic of Georgia
• Seoul (South Korea) to, say, Kunming in southern China or Hanoi in Vietnam

It is extraordinary that people who have paid taxes all their lives (including the Goods & Services Tax) should be sked to do this, just because some bureaucrat in Darwin signs a piece of paper.

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• The image at the top of this post is from the website of Cairns Unlimited! Outback Tours

Great Figures in Transplant / Non-transplant History > Stan Whippy Ritova

Stan Whippy Ritova, titled Ratu Viliame Ritova (1935-2009) was a noted  journalist in Australia and in his home nation of Fiji.

He stood for the welfare and rights of kidney patients in Fiji.

Paradoxically, the shortage of facilities in his home country was to eventually force him to move to Australia.  From this base he continued his journalistic career up to the time of his death.

His work eventually led to the eventual establishment of the first kidney dialysis centre in Fiji in 2008. (2008!)

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Obituaries in:

• Fiji Times Online
• Sydney Morning Herald

Anshoo Mala Chandra, New Dialysis Centre to Save Lives, Fiji Government Online Portal, 27th May 2008

Image credit: the image of Stan Whippy Ritova with the non-elected and self-appointed Prime Minister of Fiji, Commodore Voreqe (Frank) Bainimarama, is from the Fiji Government Online Portal of 27th May 2008

Location of the Fijian Islands via Google Maps

The vexed issue of transporting donor organs

Local media has this week reported that Australian scientists have developed an improvement in the solution in which donor hearts are transported – making a donor heart viable for up to 14 hours, as against the current situation of 5 or so hours.

The solution also apparently makes the organ generally more viable for transplantation, even when rapid transfer is accomplished.

The time factor is of great importance in a geographically-large nation such as Australia, where it can be impossible to move a donor organ coast to coast due to limited time frames. 

This would also have effects in other geographically-large nations such as the USA (which geographically is about the same size as Australia) or Russia.

The Australian newspaper reported this as follows:

The crucial extra hours would for the first time allow a heart that suddenly became available on the east or west coasts of Australia to be flown across the country if a suitable match were identified -- or even across the Tasman [Sea, to New Zealand].

This is especially important in the case of my country, which amongst the advanced nations of the world has a poor record of organ donation.

It also appears that this would also open donor organ movement between Australia and New Zealand.

An increase in the range of potential donor organs would, to my untrained eye, appear to be a path to long-term increase in likely success of organ transplants overall.

At the moment this breakthrough is geared to donor hearts. A stated aim of this research is to extend this to other donor organs.

The research for this breakthrough was undertaken at the Victor Chang Cardiac Research Institute of Sydney. 

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Articles in

• ABC [Australia] News Online

• Sydney Morning Herald
  

Image credit:  from the blog Hannah's World

Postcard from Adelaide

We’re having a short vacation in the city of Adelaide, capital city of the Australian State of South Australia – 1320 km (820 miles) west of Wollongong.

This has given me cause to reflect on the very different (to the rest of Australia) system of organ donation in South Australia.

Home dialysis and the cost of side issues

This is post # 100 in this blog.

This article in the Sydney Morning Herald caught my eye.

Governments are very happy to shift the cost when it saves them a quid, but they can be a bit slower when there are unintentional consequences such as shown in this article.

I recall that I had enormous problems safely getting rid of my empty syringes of pharmaceutical EPO (which, by the way, is legally prescribed to patients with renal failure). No one in the health services wanted to assist me in taking responsibility for them.

Let me quickly add that I much preferred home dialysis anyway - much more comfy at home, and I had scope to do my 9-hour overnight sessions - but one did feel mildly imposed upon when such anomalies popped up.

The Gift

Brace yourself, folks.  In its ongoing quest to regain its lost ratings crown, and in its ongoing ratings war of attrition with the 7 Network, the 9 television network in about to re-launch the reality series The Gift.

Neale Prior, writing in The West Australian, sums the situation up neatly by writing:

The Nine Network has had more than its share of reality TV flops of late, so it is probably a good thing that it is transplanting a proven performer back into its schedule.

To its credit, the one previous series of this program is credited with a 40% increase in organ donor registrations in Australia - off an admittedly low base figure, given that Australia has one of the worst figures in the Western world for organ donations.

Anything that raises this figure cannot be a bad thing.  So I will watch next Wednesday's episode and report back.

• The Gift is currently scheduled at 9pm on Wednesday nights on 9 and affiliate stations.

• Thinking of making your donor intentions known? In Australia, you can register for organ donation at the Australian Organ Donor Registry.  Elsewhere, discuss this with your family medical practitioner or (in many countries) your driver-licencing authority.

• Wherever you are, discuss your wishes closely with your next of kin and clearly make your wishes known.
  

medical_imperialism

Further to my post introducing research on Good Samaritan websites comes this article from the Melbourne Herald Sun concerning an Australian woman paying a Filipino man AUD $65,000 for his kidney.

Dialysis is a tough road to travel.  My wife and i did it for 5 years, and I, like all other renal transplant patients, still have it hovering over our heads (at least in the background, if I might mix my metaphors).

Different people react to this situation in different ways, and its not for me to judge the opinions of others and the actions of others (unless these actions are wrong).

But I sincerely believe, in my humble opinion, that this lady has this wrong.

This belief comes from the following:

• It is the worst type of medical imperialism to wave a roll of cash before a person in exchange for their kidney.  This is not an equal power relationship.  The bloke would no doubt do anything to put food on his family's table, to the point of doing this.

• Judgements about suitability of donation should be made purely on the basis of medical reasons, entirely free of other considerations - such as ability to buy or ability to sell.  This is why I have such an issue with the current form of health insurance in the USA - apart from it being so utterly unjust to so many people, it also interferes with the purely medical decisions needed to allocate donor organs.

In justifying this position, this lady is also inadvertently sprerading misconceptions about dialysis.

The article states that her "... health has deteriorated after three years of gruelling dialysis."  (I assume the article refers to haemo-dialysis, but it is not clear.)  If this is so, then she should be talking closely to her doctors because usually a person can go along quite well on dialysis. 

And Australia has a very low mortality rate for dialysis patients.

And quite apart from this, the last thing a prospective dialysis patient needs is to be told inaccurate stories of "slow death" on dialysis.

Finally the lady is quoted in the article as saying

[...] you have to understand you can't judge me because if you were in my situation you would do exactly what I am doing.

Well, my wife and I are 2 people who had 5 years to do what she is doing and we chose not to do so.

• Disclaimer

• Image credit:  picture of donor Alex Sarip by Michael Sarini, published in HeraldSun.com.au on 2nd March 2008

Priorities: digital television vs universal health insurance

Let me state up front that usually I am reluctant to publicly comment on the affairs of another nation;  indeed, whilst I was in local government service, I never even commented on the affairs of another local government authority.

But I sincerely believe that I can claim an exemption with the USA.

The reasons I seek this exemption are:

• My wife is an Australian graduate of Berkeley and lived for some years there whilst studying.
• Her work brings her to the USA frequently, and I have been fortunate to accompany her on these trips since our marriage.
• We continue to maintain friendships in the USA, especially around the San Francisco / East Bay area.
• We have indeed lived in the USA, albeit for short periods of time (up to 3 months at a stretch).
• And of course the position of the USA in world affairs means that this position affects those outside the USA.

Having declared this, I now feel OK about making the following observation.

After hearing and reading about the horror stories about medical and insurance funding for health services in the USA (a cursory read of Dialysis from the Sharp End of the Needle shows this), and after following the agonising ongoing debate as to whether there should be a universal health insurance scheme in the USA, I was amazed to learn this week discover the following.

The US Government is offering subsidies to entice people to buy those set-top boxes as part of the switch to digital television.

The subsidy amounts to USD $40 per box.

This certainly shows where national priorities are.

• This YouTube clip shows an interview on WBAL TV Baltimore in which Commissioner Michael J Copps, of the Federal Communications Commission, explains digital television.  He is interviewed by Sarah Caldwell.

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Live kidney donors and Good Samaritan websites

An interesting article in Clinical Transplantation, and discussed in Science Daily, concerns research into the rise of so-called "good Samaritan" websites permitting those waiting for kidney transplants to solicit donations.

The rise of living donors is interesting;  until I read this article, I had no idea that 38% of kidney transplants in the USA were involving live donors.

It seems that as medical science pushes people in the direction of live donors, side-effects such as the "Good Samaritan" website must be anticipated.

This is particularly so where some kidney conditions (such as mine) have genetic causes, thereby ruling out donation from one's family / relatives.

I personally have grave reservations about the "Good Samaritan" concept, on the basis that anything that distorts a purely medical judgement on appropriateness of prospective donation is to be discouraged.

But hey - if people are pushed to the "live donor" option, then this type of website will increase.

• Disclaimer

• Image credit: The Good Samaritan by Jesus Martinez Gordo.  URL:  http://jesusmartinezgordo.info/images/HE%20QI/cuadros/5-GoodSamaritan.jpg

Great figures in transplant / non-transplant history: Natalie Cole

This blog wishes to salute the noted American singer Natalie Cole;  it has just been announced that she has undergone a kidney transplant in Los Angeles.

Goodonya, Natalie!

By way of reprise, here is a (somewhat visually wobbly) version of Unforgettable in which she does a duet with her late dad Nat "King" Cole.  This was uploaded by swinginkatz.

You might also wish to view the "behind the scenes" video from her official website.

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• Announcement on her official website.
• Image credit:  MyBCT.now.com
  

UPDATE - 24th MAY 2009:  In doing follow-up research on this post I have just stumbled across the announcement of the death of Natalie Cole's sister Carol.  Always a sad time, a death in the family is particularly sad when one's energy is directed at getting over a transplant.  On behalf of our readers, this blog conveys our condolences to the Cole family.