Pissing Against the Wind

It's no longer a question of technology

This year marked the fiftieth anniversary of the first successful organ transplant -- which happened to be a kidney transplant among twins. It also happened to be the year when I received a new kidney, from a cadaver, back in April. Since then it has been working well, more or less, and during this time I couldn't help but draw some parallels between the experience I had just gone through and the subject of technology, social change, and globalisation, topics about which I write frequently. One of the main similarities I have noticed is despite the major advances in science and technology over the years, and the promise of equitable and cost-effective treatment, what often hampers true progress is not the technology itself, but its application.

Although the topic of renal failure and, subsequently, an organ transplant, may seem rather personal, it's actually a growing problem that society is increasingly being forced to confront. End-stage renal deficiency (ESRD), in where the kidney or kidneys are no longer able to work sufficiently to sustain life, is a virtual epidemic in many countries of both the developed and underdeveloped world. In Canada, for instance, this health problem is increasing in prevalence by approximately 10% annually. As countries find their health budgets stretched beyond the limits, it's becoming more and more difficult for them to provide adequate resources to meet the growing needs for treatment.

It's commonly assumed that the main reason for this virtual epidemic in many parts of the world is an aging population. Yet this is only partially true. In my experiences thus far, I have come across many young people who suffer from renal disease. Indeed, in Hungary I met just as many young people as old people with the problem.

The virtual epidemic associated with ESRD has to do with a combination of factors. Some are genetic or the result of bad luck, such as when a major childhood disease like Scarlet Fever damages a kidney. Others, however, are man-made and preventable. One of the most obvious is the environment. As we poison the environment we invariably poison ourselves. The massive rise in cancer and many other diseases -- including some that had previously been wiped out in the developed world -- attests to the fact that modern day capitalism lies at the root of our social and personal ills.

Along these lines, a consumer society in which we ultimately gorge ourselves to death through over-consumption is an obvious cause. In many countries of the developed world, obesity has become such a problem that insurance companies and even airlines now charge fat people extra for their services. What is astonishing is that in some areas of the underdeveloped world, where starvation used to be the main problem, obesity has now became the main concern.

The fact that modern day capitalist societies are drug-infested societies is also a major factor leading to the virtual ESRD epidemic. As pharmaceutical companies, known as Big Pharma by their opponents, push massive quantities of of both prescription and over-the-counter drugs down people's throats, in most cases to help suppress the ills of living in a modern day capitalist society (such as stress and obesity), the health of the population no doubt suffers. This is especially so for kidney-related diseases. As the kidneys are the master chemists of the body, and a drug is a chemical agent for manipulating or suppressing certain bodily functions, any type of drug will affect how our kidneys function in one way or another. Thus, with people taking so many types of drugs -- from simple medications such as vitamins to pain killers -- it should come as little surprise that we are in the midst of a virtual epidemic when it comes to ESRD.

Prevention the Best Medicine

As with many problems we face in the Third Millennium -- from the environment to the application of certain technologies -- prevention or taking action at an early stage is foremost the best way of finding an adequate solution. In terms of renal failure, early referral to nephrologists of patients with kidney problems can lead to better health care outcomes and lower costs for both patients and the health care system.

The potential benefits of early referral to a nephrologist include identifying and treating reversible causes of renal failure, slowing the rate of decline associated with progressive renal insufficiency and delaying the onset of ESRD, managing the multiple coexisting conditions associated with chronic renal failure and, above all, better patient survival. With early referral, some therapeutic possibilities include simple strategies such as control of blood pressure, modification of diet, evaluation of lipid levels, control of calcium phosphate, and management of anemia with erythropoietin. Not only this, but for those who will invariably require kidney replacement therapy, early referral allows for the adequate preparation for dialysis or transplantation, both of which require at least 12 months of relatively frequent contact with a renal care team. Thus, in many ways, early referral is of utmost importance as time is of the essence for many patients.

Yet in many countries early referral and the possible prevention of renal disease from developing into ESRD is lacking. One would assume that this problem is limited to underdeveloped countries, but this is clearly not the case. In Canada, for example, family physicians in Ontario were asked about their referral practices for patients with various levels of serum creatinine (serum creatinine being the easiest and quite reliable indicator of kidney function). Most physicians, almost 85%, indicated they would not refer patients with creatinine levels of 120 to 150 mmol/L (which represents a loss of filtration function of more than 50%). A smaller but still substantial proportion (27.8%) said that they would not refer patients with creatinine levels between 151 and 300 mmol/L. Only for creatinine levels above 301 mmol/L did almost all of the physicians indicate that they would make a referral.

These findings suggest that many patients with potentially serious yet possibly reversible renal problems are not referred until substantial and irreversible scarring has occurred. The problem of late referral has also been documented in England, Scotland, France, the United States, and Brazil.

In my case, I was rather fortunate. My first indication that I had a problem with my kidney (I was born with only one) was a severe gout attack I experienced in Germany soon after I had returned from an extended stay in Mongolia. At the hospital, the conclusion was that I had either drank too much alcohol or ate too much meat. The gout subsequently subsided but never fully disappeared, flaring up now and then. At one point, when the attacks became quite persistent, I decided to see a specialist. Fortunately, a former student of mine who recently got married referred me to her father-in-law who happened to be a urologist. Thus, through sheer chance I was able to start following my progress toward ESRD at a relatively early stage. In this way, it took approximately seven years for me to reach end stage kidney failure and, once again through sheer chance, I was able to undergo a kidney transplant a mere few weeks before dialysis would have begun.

Involuntary Euthanasia or Manslaughter?

Apart from late referral, in many countries non-referral also appears to be an enigma. Official statistics that deal with the incidence of ESRD almost always count only patients treated with renal replacement therapy, and not those who presumably die of untreated renal failure. As a result, although in Canada the incidence of ESRD is less than half that reported for the United States, some of this difference may be related to non-referral of patients who might have benefited from treatment.

Non-referral is often influenced by age and a co-existing disease. For example, according to the Canadian study already mentioned, an otherwise healthy 85-year-old person with renal failure would have been referred for dialysis by only 65.9% of the physicians surveyed. Even more disturbing was the finding that an 85-year-old person with diabetes would have been referred by only 44.1% of the respondents. As with late referral, non-referral for dialysis has also been reported in England, Scotland, and Brazil. Thus, age and comorbidity seem to be associated with both late referral and non-referral in many countries.

Unfortunately, the problem of both late referral and non-referral is expected to only worsen as the processes of globalisation and privatisation exert intolerable stresses on health care systems around the world. In Hungary, one obvious threat of privatisation is the possibility of rationing ESRD therapy, namely, dialysis. This will no doubt discriminate against the old and weak who will fall victim to both late referral and non-referral practices in increasing numbers. In many ways, it's the ultimate expression of modern day capitalism, which applies the Darwinian notion of survival of the fittest -- and the richest.

East Least, West Best?

Being a citizen of both Canada and Hungary, I was able to experience the process of ESRD treatment in both countries first hand. As my condition worsened two years ago and some kind of kidney replacement therapy became inevitable, I had to consider getting a kidney transplant in either country and, in the worst case scenario, be prepared for dialysis.

As in many areas in which technology plays an important part, such as education, health, etc., the common assumption held by people on both sides of the divide is that the quality of services is without doubt better in the west and of sub-standard quality in the east, the dividing line between the two running along the border of the former Iron Curtain. This is a dangerous assumption to make and masks problems in the west that leads many to the illusion they have the best of all possible worlds, when in fact their methods and equipment are actually quite outdated.

One advantage that countries from the east had over the west is that with the end of the Cold War and their rush to modernise their economies and societies, they had started from a lower point of departure. In other words, when new equipment was needed, they often were able to get the latest in technology, while in the west tight budgets prevented many hospitals from investing in new technology as what they already had was considered to be still sufficient. Hence, in this way many countries in the east were able to "leapfrog" their way to the modern era.

Of course, this didn't always turn out to be the case. In many instances, old technology and methods from the west were passed off as new technology in the east. A good example of this was the computer banking system in Hungary that was initially adopted by the country's largest savings bank, OTP.

In terms of health care, the situation is very much the same. In Hungary, the contrasts are often stark. Modern, computer-based dialysis machines are housed in dilapidated buildings. Often, rural areas aren't as well equipped as major urban areas, namely Budapest. Despite this, generally it can be said that in terms of specialist areas (i.e., brain surgery, organ transplants, etc.), the skill of the staff and the equipment available is among the world's best. Where the country is lacking, however, is in after-care and follow-up which is, in many cases, pathetic.

The main problem in the west, meanwhile, has more to do with an outdated and inefficient bureaucracy. The number of pre-transplant tests I had to go through, and the time required in order to complete them, was much more cumbersome than in Hungary. What had taken me over a year to accomplish in Montreal took only weeks in Budapest, with much less fuss. Moreover, administrative mistakes were often made. The different health agencies weren't properly communicating with one another, to the extent that one hand didn't know what the other was doing. As a result, mistakes repeatedly occurred, such as when not all the tests which were required were completed. In fact, at the very end of the process, when everything was supposed to have been complete, it was found out that the most basic test of all -- my blood type -- hadn't been done. This, after a year in preparation for a kidney transplant and I was presumably ready to be put on the list.

The Promise and Perils of E-Health

It is hard to believe that with all the information and communication technology which surrounds us, that the bureaucratic and administrative problems I had experienced could still exist. This brings into sharp contrast the difference between the reality of present-day practice and the future hope of telemedicine. Indeed, information technologies could bring about the most dramatic revolution in health care since the discovery of penicillin. The question is: what is preventing it from happening?

Computer-mediated health applications offer the potential of lower costs and shortened recuperation times. An example is the use of non-invasive or minimally invasive operations. Meanwhile, mobile and wireless communications could support a new type of "infostructure", giving mobile health professionals ready access to electronic medical records and reference data. Physicians have already taken keenly to personal digital assistants (PDAs).

Across the EU, general practitioners' rate of Internet connectivity increased to 78% by 2002, with 98% connections in the Nordic countries and 100% in the UK. Some 72% of practitioners use the Internet for continuing medical education and 68% to read medical journals. More active Internet applications are slower to take-off, however, with only 48% of medical practitioners using electronic health care records and 46% transmitting patient data via the Internet. Fully interactive use of the internet remains unusual, with just 12% of practitioners using email consultation and a mere 2% enabling appointments to be made online.

These statistics, unfortunately, were reflected in my own experiences as well. While in Hungary, trying to maintain contact with my doctors in Canada was difficult, to say the least. It was not a problem of access; they are just not used to corresponding with patients via simple e-mail.

The application of information and communication technologies to health care has been dubbed "eHealth" by pundits and covers the whole spectrum of activities, from initial diagnosis to convalescence and follow-up. Studies carried out over the last few years are impressive: in afour-month clinical trial of 200 intensive care patients, normal staffing was supplemented with round-the-clock telemedicine. Patient mortality fell by 60%, complications by 40% and costs by 30%. Other studies cite similarly impressive improvements in both medical performance and cost savings.

In the not too distant future, it's envisioned that home telecare can be used for patient monitoring. Possibilities exist for patients to routinely check their own health using a new generation of electronic monitors which relay data on blood pressure, temperature, heart condition, and even kidney function to their home computer which, in turn, either runs a basic diagnostic program or simply forwards the information to their doctor.

There are several projects in the area of telemedicine already underway. Toxbase holds information on 14,000 chemical agents. Britain's NHS Direct had half a million visitors in January 2003, and provides health information and access to a 24-hour nursing help line. Orphanet is a multilingual portal devoted to rare diseases. HYGEIA net, based in Crete, gives patients 24-hour access to their health records, as well as teleconsultations. There is also video-assisted specialist consultation in Spain, the Norwegian closed network for health care institutions, and Websurge, a distance learning program offering video training in English, French, and Japanese together with access to world experts.

Still, many developed countries have only just begun to utilise information technology within the medical sector. A recent fire in a hospital in the north of England throws the problems into stark relief. A storeroom for paper medical records got so full that the files on the top of the heap touched a light bulb and burst into flames. The implications -- quite apart from the fire hazard -- are obvious: too much paper, little chance of data retrieval, and an absurd waste of staff time. And yet the UK has only just embarked on the job of transferring its hospital records from paper to disc.

Thus, although the potentials exist, a lack of foresight and co-ordination is laying these potentials to waste. The knowledge base is fragmented and there are few examples of country-to-country knowledge transfer. Successful applications are generally not communicated beyond academic circles, and websites, although numerous and powerful, are generally not well known.

Quality health care can't coexist with badly managed information flow. There is a need to overcome the obstacles which exist, learn from the numerous projects which have already demonstrated the power of eHealth, adopt common standards, and implement the systems.

The Capitalist Solution

Unfortunately, fifty years after the first breakthrough in making organ transplants feasible, little is being done to tackle the virtual epidemic by either going after the root causes, adopting preventive measures such as early referral, streamlining inefficient bureaucracies and procedures, or developing information and communications technologies for monitoring, after-care, and follow-up. Instead, a market-based approach seems to be favoured in where organ transplants will soon become another economic activity subservient to the laws of supply and demand. Indeed, in many ways the process of commodifying organs for transplant has already begun. As one observer noted, human body parts have become a new cash crop.

Those who favour the capitalist solution to the scarcity of human organs rely on "free market" logic to defend the practice as ethical. They argue that it's a win-win situation for everyone involved: the buyer gets a healthy organ and the seller receives some much needed cash. The roles of the organ brokers and the surgeons are often defined as benign, if not humane.

As a result of this, transplant specialists and health agencies increasingly view the legalised buying and selling of organs as a possible solution to the global scarcity of human organs. Human organs are simply treated as commodities, and the traditional barriers against their trade are being replaced by "regulation."

The perceived humane logic of turning organ transplants into a legalised big business is such that last year a former Canadian cabinet minister, who now happens to be the prime minister, had remarked that it would not be a bad idea to pay people for donating an organ. Transplant organisations in Canada were appalled at the idea, pointing out that a more efficient system for acquiring cadaver organs suitable for transplant would go a long way to help solving the problem instead.

Unfortunately, the Canadian prime minister isn't the only one who holds such views. In the Philippines, government officials have long considered a program whereby a person would be able to sell a kidney to an organ bank, which would make organs available to any Philippine citizen who needed one.

While all this may sound fine in theory, the real dynamic of the organ trade is very different from what advocates argue. Buyers and sellers may be about equal in their desperation, but they are dramatically unequal in all other respects. Buyers are obviously well-off; sellers, on the other hand, are usually the hungry, homeless, debtors, refugees, migrants, and prisoners. Buyers have access to the best modern medical technology; sellers usually have no access to medical treatment or follow-up care.

One of the major enigmas of western civilisation is that where scarcity exists, the black market thrives. Organ transplants are no exception to this axiom. The illegal trade in organs has already opened up myriad medical and financial connections, creating a new movement of human beings that is part transplant tourism, part traffic in slaves. In one well-traveled route, small groups of Israeli transplant patients take a charter plane to Turkey, where they are matched with kidney sellers from rural Moldova or Romania. The transplants are handled by a pair of surgeons, one Israeli, one Turkish. Another network unites European and North American patients with Philippine kidney sellers in a private Episcopal hospital in Manila, arranged through an independent internet broker who advertises on the web. Meanwhile, a Nigerian doctor/broker facilitates transplants in South Africa or Boston, with a ready supply of poor Nigerian kidney sellers, most of them single women. The purchases are notarized by a distinguished law firm in Lagos.

Unfortunately, there is a myth that obtaining organs from cadavers don't work very well. True, the rate of successful transplants is higher with organs harvested from living donors. However, this isn't always the case. During a recent stay in hospital for two weeks to treat an infection, I came across two young men in their twenties. Both had received a live kidney donation from their mothers, one of the best matches one could have, second to that of an identical twin. By the time I left hospital, both had lost their new kidneys; one had to even have it removed immediately because of complications. In both cases, the donated kidney didn't last more than two years. Meanwhile, during the same stay, I had also met a middle-aged man who had waited for ten years to get a kidney before he finally got one from a cadaver. It has been working for over a decade and is still going strong.

Not only are cadaver kidneys a suitable solution for kidney replacement therapy, the development of more powerful anti-rejection drugs further improves the success of transplants, whether living or cadaver. And although cadaver kidneys generally don't last as long, the ability to receive another transplant or even a third makes such transplants a viable alternative to dialysis.

Unfortunately, because of some of the myths surrounding cadaver kidneys, many regard the use of kidneys from living donors as the only possible solution. This, coupled with the fact that the list of patients needing transplants is growing much faster than the number of people who have arranged to give up one or more organs upon death, has converted the organs of the poor into a much sought after commodity.

The profit to be made from the sale of organs is such that in some instances organs are stolen from patients who are in hospital for a completely different reason. In Brazil, for example, a young mother and office clerk from Sao Paolo entered a large public hospital for a routine operation to remove an ovarian cyst. Not only was her cyst removed, but so was her kidney. Hospital officials later explained that her "missing kidney" was embedded in the tissue around the cyst. They claimed that the diseased ovary had been "discarded" and, furthermore, that crucial medical records had been "misplaced." The patient and her physician, however, were convinced that the kidney had been stolen for transplant to another, wealthier patient in the hospital.

Aside from outright robbery, some are simply tricked into giving up their organ. Criminal gangs entice poor people from Eastern Europe with the promise of work in Turkey, to only find that they will be paid for something they had not bargained for. Some are threatened at gunpoint. Less the cost of travel, room and board, and mafia fees, they end up getting little in return for what they had been forced to give up.

Although such cases are the minority, those who decide to sell their kidneys find out in the end that it's not always a profitable venture. Some don't always get the promised payment, and even when they are paid, they frequently experience complications including pain, depression, weakness, and the inability to work, usually with no hope of treatment.

Yet it's not always criminal gangs who entice people to give up an organ for transplant. Sometimes the state itself engages in such activity. In the Philippines, a government plan has been proposed whereby death row prisoners would be granted a reprieve, converting their execution to life imprisonment in exchange for the donation of a kidney. Supporters of this program argue that it's not that the death penalty is morally wrong, but rather a terrible waste of human body parts.

China apparently carries this type of abuse a step further, reportedly relying almost entirely on capital punishment as a source of organs. Although the official numbers are secret, human rights groups have estimated that China harvests organs from at least 2,000 prisoners a

year.

There are many centers to the organs trade around the world. In Europe, one of the main centers of the organs trade is in Moldova. Conditions there make it an excellent source of body parts. The government has even launched public campaigns to draw awareness to the problem, with some success. Kidney selling is now viewed by many as a form of prostitution. However, like prostitution, it's still tolerated in one way or another. Likewise, there is some sympathy for those who sell an organ, for they are often regarded as desperate victims.

Perhaps one of the most unreliable places for obtaining a black market kidney is in the Philippines. Hospitals usually don't ask for documents, and those selling their organs often lie about their age and their medical histories. This includes exposure to such diseases as tuberculosis, AIDS, dengue, and hepatitis, which can be then passed on to the recipient.

Storm Clouds on the Horizon

In the last few years, steady improvement of transplant technology and the development of more efficient anti-rejection drugs has made it possible to improve the quality of life of those suffering from a failing organ. Yet due to the failure of actually confronting the problem at it source, as well as diagnosis problems such as late referrals, most countries suffer from a shortfall in replacement organs. Organ replacement therapy no longer possesses the technological obstacles it once had; the problems now are for the most part administrative, political, economic, and even social.

In the western world, one of the biggest problems to securing an organ for transplant is acquiring informed consent. In Canada, many people don't even bother themselves with the issue, despite government attempts to encourage people to allow their organs to be transplanted upon their death.

This just shows that even in this area many developed countries need to come down from their pedestals and learn from the east. Hungary and some other countries who are in the process of "catching up" to the west operate on a system of "informed presumed consent", which means that all citizens would be considered organ donors at brain death, unless they stipulated their refusal beforehand. Such a system preserves the value of transplantation as a social good, with no one included or excluded on the basis of financial status. It also overcomes the enigma of an apathetic citizenry too preoccupied with consumerism to think much about social issues. Thus, the onus is not on the government or health agencies to convince people to give up their organs upon death, but on people to realise that unless they say no, their organs will be used for transplant, if suitable. In other words, you snooze you lose.

Unfortunately, as countries like Hungary try to become like the image they have of their western counterparts, there is a danger that some of the positive elements they possess will soon disappear. The biggest danger in this respect is privatisation and globalisation. Instead of searching for the best way to assure that the benefits of organ transplantation are shared equitably, it will become business as usual. In Hungary, attempts to do so have already been tried. A mere week before my transplant, the government had wanted to cut funding to HungTransplant, the organisation responsible for organ transplants, citing that it would no longer support a national transport and logistics company. Thanks to the opposition of the head of HungTransplant and the threat of taking the issue to the constitutional court, the government was quickly forced to reconsider.

Still, with the government bent on cutting costs where it can, it has been making it difficult for health professionals in other ways, for example by raising drug prices or even limiting the availability of some much needed drugs. The latest attempt at government plans to squander what little remains of the health services in Hungary was its plan for the privatisation of hospitals, a move which was subsequently torpedoed by a referendum held on December 5th. Although another obvious setback for the government, it definitely won't be the last in its attempt to fully privatise the health services in accordance with neo-liberalist principles.

Yet it's not just privatisation which poses a threat. With European enlargement, Hungary has now become part of the European organ transplant network, which means organs needed in one member state can be procured from another with no red tape. The fear is that this network may be open to abuse, with poorer member states of the EU, such as Hungary, supplying the organ needs of richer member states, such as Germany.

Despite advances in medicine and the promises of information and communication technologies in the area of health care, we have not come as far as we should have fifty years after the first successful organ transplant. As we face the storm clouds on the horizon which are rapidly approaching, it would be best to keep in mind that old Hungarian saying "piss not against the wind", a proverb which is appropriate to the dilemma of organ transplants in more ways than one.