'Altruistic, Voluntary, Unpaid'
The population of Bulgaria at the end of 2009 was officially recorded as 7 653 710. The number of Bulgarian organ transplant donors is 1 person per million.
The coincidental timing of the publication of these two unrelated items of information is intriguing. As they say, "Just do the math!"
Bulgarians are well used to the publication of international or European reports and statistics that show them at or near the bottom of 'good' leagues, and at or near the top of all the 'bad' ratings.
But, if one is to accept the recent statement by Jo Leinen, chair of the European Parliament's Committee on Health, Food Safety and the Environment, it is really sad that Bulgaria is bottom of the EU27 list of organ donors.
According to Leinen, the European average is 18 per million, and Spain (which has topped the table for 18 consecutive years) has 34 donors per million population. And Bulgaria has 1 per million.
So, what’s the problem with Bulgarians? Why are organ donors such a rare species?
The first Bulgarian liver transplant took place in 2005; the first heart was transplanted in 1986: and the pioneering kidney transplant dates back to 1968. The relevant medical expertise in Bulgaria has thus existed and developed over 40 years.
Bulgarian law allows for transplants. The "Law on Transplantation of Organs, Tissues and Cells" was adopted in 2004, and has been constantly updated since then. It prescribes the eligibility of donors, and all supporting procedural and medical safeguards.
Opt in or Opt out? The Concept of Presumed Consent
There are two basic national systems for permitted access to donors' organs (whether they are alive or deceased): a valid declaration that the person consents to donation; or, the opposite, that the state needs to ask permission. The US and UK have adopted the first, the "opt in" method. Bulgaria, along with countries such as Austria, Greece, Hungary, and Spain (to name only a few), follows the "opt out" procedure of “presumed consent”.
Article 19 (1) of the Bulgarian law clarifies that the process of organ donation is of the "opt out" category, in that it lists the exceptions to the procedure. It states that it is "not allowed to take organs, tissues or cells for transplantation if the person, while living, has explicitly expressed in written form his/her non-consent".
Article 20 (1) further specifies that any "Bulgarian citizen or foreigner with permanent residency has the right - while living - to explicitly express written non-consent".
Let’s not get bogged down with the legal oddity of having to be alive to express written non-consent: the default position in Bulgaria is that the medical profession may assume the right to transplant organs.
If that is the legal status quo, how can Bulgarian donor figures be so low? One complication arises with having also to seek permission of relatives and family (as in many other countries). Apparently, up to 80% of kin refuse to allow organ transplant of a deceased relative, despite that person not having made a declaration of non-consent.
It might, then, be better to go in the opposite direction, for a person to actively declare their willingness to become a donor. Not necessarily! In the UK, 90% of the population support the idea of donation, but a mere 25% actually carry official donor cards.
Legal Rights vs Human Emotion
So, whether the law favors "opt outs" or the opposite, the determining factors in permitting - and engaging oneself in - an organ donation seem to be highly emotional and personal.
The UK example cited above smacks of hypocrisy, the "not in my back yard" (NIMBY) syndrome. The Bulgarian attitude - well, is also difficult to comprehend.
One respects the feeling that there can be some entirely personal problem with facing the idea of a loved one being somehow violated - many evidently cannot tolerate that scenario. It’s just not open to discussion.
A quick straw poll conducted in the office indicated that 4 colleagues were in favor, 1 was not, and 1 was in favor of the general principle, but not as applied to him/her.
Could it be a social problem - is there some stigma attached to becoming a donor? Given that UK statistic already cited, that doesn’t seem to apply to the majority of the Brits, for example.
Then, what about religious convictions - do they preclude the notion of removal and transplanting of human organs? It seems not.
None of the major faiths oppose the practice of transplantation. In fact, they all express, either through citing their traditional holy texts, or by officially stating their contemporary doctrines, that the practice is, in religious terms, praiseworthy. For example, even the conservative Spanish Catholic Church actively supports the practice.
We seem not to be able to resolve a puzzle: why do so few people, throughout Europe, donate their organs? Bulgaria may, mathematically, have only 7,5 donors, but the Spanish top figure of 38 per million is not impressive, either.
What can be done? Does anything need to be done?
The European Union has at last woken up to the fact that, if medically unnecessary deaths are to be reduced, a coherent and positive program to encourage donors is needed.
At this week's Madrid conference on the subject, Jo Leinen said: "At the moment, there are 56 000 patients waiting for a suitable organ donor in the EU, and it’s estimated that every day 12 people die while waiting for an organ transplant".
New measures to improve the situation are expected to be passed on the European level by the end of May 2010. They will focus on two aspects of the problem: actively encouraging donors and increasing pan-European and member state coordination; and combating the burgeoning trade in illicit transplants.
The international illegal trade on human organs has been described as one of the fastest-growing criminal sectors worldwide. A World Health Organization (WHO) report even lists web sites that offer "organ tourism", and the going rate for an organ, while stating that, in 2008, over 100 000 legal transplants were carried out worldwide, such is the demand for this medical procedure.
Shocking stuff, that proves the need for more, legal and voluntary donors everywhere, and certainly in this country.
There’s good news, for once. The new EU directives will, of course, incorporate Bulgaria as a member state. But there are already signs of positive activity in the country.
PRO.BG ran its own campaign "Life after Death!", from April 2009, to encourage Bulgarian citizens to become donors. The Health Ministry has also begun (as of November 2009) its own complementary campaign of public awareness of the issues.
Within that ministry, a special unit, the Executive Agency for Transplantation, has existed for some years. Its Director, Dr Teodora Dzhaleva, is highly supportive of the need to increase social awareness of the issue. She has pointed out that, in 2009, Bulgaria carried out 32 kidney, 13 liver transplants and 5 heart transplants, but that there were some 850 people waiting for organs in those three main categories.
The agency's web site shows that, as of March 15, 2010, 2 811 people had registered non-consent this year, while 807 potential recipients of organs were recorded.
She has also stated that the personal donor refusal rate in Bulgaria is between 60% and 70%, largely due to people's lack of information and trust in doctors. This compares, she said, with a refusal rate of 10% in Spain. Bulgarian family refusals are up to 80%, according to her.
Bulgarian PM Boyko Borisov has declared himself in favor of increasing state efforts to support both awareness and the medical process, and is on record as having promised that BGN 96 M will be allocated to these ends in 2010.
Further, a multi-national donor operation has recently been extended to Bulgaria. "EuroTransplant"will assist Bulgaria with transplants that are not currently carried out in the country - small intestine; lungs; pancreas; and multiple organ transplants. The organization will also help with treatment and in improving the qualifications of Bulgarian specialists.
So, the Bulgarian infrastructure is already in place, and being further developed. State financing is in place, the medical expertise exists. It will all proceed even further and faster when the EU initiatives come into force.
All solved, then...
Not quite! Legislation, medical facilities, political will, funding - together, they are useful and necessary. But a vital contribution is needed for all of this to work - Bulgaria needs donors.
Where are they hiding? Why are they afraid? Are we all so scared, so selfish? Is it simply that we can’t bear to do something that will be required in the new EU directives - to commit to a life-saving action that is "altruistic, voluntary and unpaid"?