Burden of disease as it relates to organ trafficking
Dr Nancy Ascher
My job today is to give you some context about organ trafficking. I know that you spend a lot of time thinking about people trafficking, prostitution, and labour trafficking, but this is a little bit different, it’s a much smaller piece of the pie but a really important piece of the pie.
I want to talk about the Sustainable Development Goals and really get down to what we’re talking about with “global burden of disease”, what is it all about that we have to worry, what’s the role of transplant in the global burden of disease, and what’s the potential for exploitation. Then, I think, Dr Elmi Muller, my colleague, will talk more about the specific exploitation.
Health care isn’t concentrated in a single country: it’s all over, it’s something that we all, throughout the world, have to think about and it is never more important than when we think about organ trafficking, in the sense that what happens in your country or what happens in my country affects your country.
So here are the Sustainable Development Goals that were pronounced in 2015 with the notion that they would be done by 2030. Of course, this is an incredible lofty goal in and of itself, but you can see that SDG 3 is good health and well-being, with the notion of some type of universal health care, a basic minimum amount of health care for people. That is, of course, what we are all interested in.
The idea of national self-sufficiency is something that you have to think about when you think about organ trafficking. The notion is that every single country figures out what the burden of disease is. In the case of transplants it means figuring out what the needs are of patients with end-stage organ failure, developing adequate health providers, educating these providers – physicians, surgeons, nurses, hospital resources – meeting the needs of transplant with either deceased donors or live donors, developing an infrastructure to enable this process, and, finally, developing registries so we can figure out who is waiting for an organ and who has given an organ, so that we can actually monitor what’s going on in every single country.
I frequently am asked to give advice to different government officials and ministries of health, as to what the responsibility is of the government and here are some of the factors that are necessary for governments to think about transplantation. Perhaps most important is this notion of prohibiting unethical transplant practice, either paid donation, trafficking, and approach to foreigners. If you come to my country you might have a hard time getting an organ transplant depending on where you land. It’s also important for the government, and the legal system, to certify transplant centres, to develop again these registries, and to develop equitable transparent methods by which we distribute organs. Because we expect people to donate the organs, they have to also be able to get organs in a specific country.
If we divide the world up into different kinds of diseases, there are the communicable diseases, such as HIV, malaria, TB, and then there are the non-communicable diseases, and that is these chronic diseases, heart disease, liver disease, diabetes, high blood pressure, and finally trauma. The people who study death and study disease put the categories into these little buckets, and the point I want to make is that in 2000 the entire world was mainly plagued, in terms of cause of death, by communicable diseases, HIV, malaria, TB. Now, in 2016, it’s much more chronic diseases that are causing death.
Having said that, there’s no question that this delta in cause of death really depends on what your economic status is. So, what happens in low-income countries in 2016, where still countries are fighting with communicable diseases, and then as countries become more developed and more wealthy they are seeing more and more chronic diseases? Now that is not to say that poor countries don’t have problems with non-communicable chronic disease. They do, but they have more problems with infectious disease.
In the most developed countries, the issue is chronic diseases. So there are people in these well-developed countries, in these rich countries, who are dying of heart disease, dying of liver, dying of kidney, and they want organs. Where do they get the organs? They get them from people who are less well-off than themselves, who need money, and who are willing to sell one of their kidneys or part of their liver and that’s really the scandal that we want to talk with you about. This is all dependent on having good quality data, and you can see that in most parts of the world there’s very good quality data but from the continent of Africa there’s poor data so, many times, we are guessing at what the real numbers are.
This is the data that has been generated by the World Health Organization: 56 million deaths in 2015, and look, only 11 million – and I don’t mean that to dismiss it, it’s a huge number, but compared to non-communicable diseases – chronic diseases, communicable diseases, are quite rare, nearly 40 million deaths in 2015 from chronic disease. That is the pool of potential recipients.
Now, the global burden of disease study actually depended on 130 countries, about 2,000 investigators and the notion here is not just to study death, because we know that there is death which is obviously the end of it all, but there are also people who suffer with disease. So the burden of disease looks at both deaths but also looks at those people who lose a healthy life year, and that’s measured in DALYs. So both premature death as well as a year off your life in suffering is counted, and that gives us an even bigger number of people throughout the world who are suffering, either dying or suffering with disease.
When we do this we actually look at risk, and that’s the whole notion of the global burden of disease study and we take a look and there is a certain level of risk: you have diabetes in your family, or you have metabolic syndrome, or you are overweight, then you have a certain level of risk. If you drink alcohol in addition, or if you get hepatitis C or B in addition, your risk is much greater. This way, the health professionals can actually figure out how to mitigate the risk in a given patient given your baseline risk to try to improve health and the notion here is to do a risk assessment, communicate that risk assessment to the government, and then do something to mitigate the risk, for example a program to eradicate hepatitis C. The programs that the WHO supports to eradicate HIV disease or malaria, are the same idea here.
Regarding DALYS, death and disability from disease, we are missing data from Africa so that’s a major problem that really inhibits us from giving you a full picture of what the disease burden is. But considering the global burden of disease, by region, 2.5 billion individuals either die or suffer with disease.
Look at the places where disease is the most common: sub-Saharan Africa, East Asia, and South Asia. Those three places, South Asia sub-Saharan Africa and East Asia, have the lion’s share of the burden of disease in the world. We can consider the growing amount of non-communicable diseases relative to communicable diseases throughout the world, and the absolute number, an estimate of course, of people who have various diseases, but the majority of people in the world now are suffering from non-communicable disease, chronic heart failure, and chronic liver failure.
There were 56 million deaths in 2015. Considering the burden of kidney disease, there are 1.3 million people estimated in the world who have kidney failure, but then there are up to 7 million people who have kidney failure but cannot afford dialysis, so they fall into the death category. There are 2 million individuals who have had acute kidney failure and these most commonly are postpartum women – very commonly in Africa – who have bleeding and then develop acute kidney failure, and are not supported by dialysis and die. So in fact there’s closer to ten million people who die every year who could benefit from a kidney transplant.
It’s not just the death from kidney transplant, but consider the burden in terms of the cost of maintaining patients on dialysis. At least in Europe, it costs some seventy to eighty thousand euros per year. It is estimated that by the year 2030 there will be 5.4 million individuals with end-stage renal disease who could benefit from dialysis and the cost, let alone the environmental cost, of doing dialysis is enormous, 900,000 tons of plastic waste from dialysis.
So these are things we have to think about. Considering the global burden of liver disease, again we have inadequate data from Africa. When you actually look at the global picture, what we could do in terms of transplant, the need is enormous: ten million people who might need a kidney transplant, somewhere between 2.5 and 5 million people who might need a liver transplant; heart, maybe up to 18 million people. Now, of course, many of these patients are older or have other comorbidities that would keep them from getting a transplant, but this gives you some idea of the scope of the problem. You can compare between the gross national product per capita and the disease burden for communicable diseases, and you can see that African countries have a low GDP per capita and a high burden of communicable diseases, whereas with the western countries it’s the reverse, so it’s inversely related to your income.
In contrast when you look at chronic diseases, heart disease, liver disease, kidney disease, it doesn’t matter how rich your country is, your people will still suffer from communicable diseases, so this is a cautionary tale for us all. We all have to worry about this, and your countries will reach a stage where you will have to worry about this as well.
In 2016 we only did 140,000 transplants, and it is estimated at that time that this represented some 10% of the global needs, but I think I’ve shown that it may represent less than 1% of the global needs really.
Finally, I just want to leave you with the thought that we do 140,000 transplants; the need for transplants, the demand, really outstrips the supply by several thousand-fold, not one hundred fold. The donors are either alive, living related, or living unrelated, someone who might sell their organ, or deceased. Inadequate supply of deceased donors increasingly puts pressure on the use of live donors and has the potential for exploitation of these people. Organ donors tend to be poor people, the most vulnerable people. I want to leave you with the notion that the larger challenge that we are faced with, being part of a global community, really is meeting the health needs of rich and poor people who all will have, will all suffer from end-stage organ disease.