Organ transplantation (in the UK) and Organ Donation
Over the last century, organ transplantation continues to improve as technology advances and research developments. One challenge however, has remained from the outset and that is to overcome the shortage of suitable donor organs. Some countries in the world seem to be addressing this issue more aggressively than others. While Spain and Croatia have the highest organ donor rates in the world, Japan remains at the bottom of the list, as one of the most donor lacking developed countries in the world. I will be discussing Japan’s poor results in another article. For now, I want to look at how my own country, the UK, is tackling the issue. I shall be giving a brief introduction on organ transplantation (specifically that of heart transplants), before looking at UK donor waiting times, regulations and how the British Heart Foundation is working to increase awareness. I will end with a short summary on how countries around the world are managing the subject.
Organ Transplantation: A Brief History
In 1954 Dr J. E Murray performed the world’s first successful human organ (kidney) transplant in identical twins. Although the idea of transplanting organs from one human being to another had already been around since ancient times, it was Dr Murray who discovered that rejection following transplantation could be managed.
The discovery of Imuran (immunosuppressive drug) and other anti-rejection drugs, such as prednisone, allowed Murray to carry out transplants from unrelated donors. By 1965, the survival rate after receiving a kidney transplant from an unrelated donor exceeded 65%. Since then, according to data analyzed from 2008 for 104 countries, it is shown that around 100,800 solid organ transplants are performed every year worldwide.
Although it was Christiaan Barnard who performed the world’s first heart transplant in 1967 in Cape Town, the father of cardiac transplantation is said to be the American surgeon Norman Shumway. In collaboration with Randall B Griepp, he was the first doctor to successfully carry out a human heart transplant in 1968. 12 months after Barnard more than 100 cardiac transplants were performed over the world though results remained poor.
In the 1980s cardiac transplantation became widespread with the classification of historical rejection and the introduction of ciclosporin (immune suppressant drug) in the early 1973.
In the UK heart transplantation numbers hit their highest in the mid-1990s, with more than 300 transplants, but now this number has decreased to less than half that.
Between 2014/15, 181 heart transplants were performed, dropping in numbers compared to 197, in 2012/13. It is unclear as to why this rate has fallen, but a lack of resources with intensive care beds is one issue that has been highlighted. The present survival rate after heart transplantation is 80% at one year, 70% at 5 years and 50% at 10 years (in the UK). The biggest cause of death remains rejection, infection and blood clots.
Transplantation Waiting Time
In April 2013-March 31 2014, 4,655 organ transplants were carried out from 2,466 donors in the UK. However, in Oct 2015, 6,856 people are still waiting, with kidney transplants being highest in demand. In the UK the current waiting time for a transplant can be anything from a few months to several years. It is said that the average wait for a heart transplant (in the UK) is about six months.
49,000 people in the UK have endured the wait in the past decade and over 6000, including 270 children; have died before receiving the transplant needed. From these statistics we can see that the number of people being added to the waiting list is well beyond the numbers of performed transplants.
The UK is currently reviewing policies to ensure organs are “distributed throughout UK to sickest patients with greatest risk of dying, while ensuring risk of transplantation within acceptable limits.”
Since Nov 2015, 267 people are said to be waiting for a heart transplant in the UK with 46 of people already having waited over 3 years. The most urgent of patients being placed at the top of the waiting list needing heart transplants, are considered to be those who are in hospital on inotropes, an intra-aortic balloon pump with mechanical circulatory support device.
As the wait can be fatal, the use of LVADs (Left Ventricular Assistive Device), have been used for the past 25 years to extend mortality, as, ‘a bridge to transplantation.’
LVADs are implantable mechanical pumps operated by batteries which help the left ventricle pump blood to the rest of the body. Newer continuous flow devices have been used for nearly 10 years with smaller pumps and easier implantation.
It is expected that there are currently 6000 people who have received the LVAD Heart Mate 11(as depicted in the pictures) since 2005. The demand and need for long-term, durable LVADS continues to grow as coronary heart disease is fast becoming the UK’s biggest killer, with 2.3 million people being affected by CHD.
Although life with LVADs and heart transplants come with risks, it can help people return home and experience improved and extended quality of life.
It is said that less than 5000 people die a year in circumstances allowing them to donate. Therefore, the issue remains, that there is not only a serious shortfall in the number of donors, but also in the number of suitable donor organs available for the growing number of patients being added to the waiting lists. 33% of donors are now over the age of 60 compared with just 17% in 2005.
While current research is directed at techniques to improve organ preservation and tolerance (where minimal immunosuppression is required), the number of people registering to be organ donors also needs to increase if a change in statistics is to be seen.
Trends and Regulations in the UK affecting Organ Donation
o There are two laws which affect organ donation and transplantation. The Human Tissue Act 2006 and The Wales and The Human Tissue Act 2004.
o Currently in England and Ireland you have to express willingness, called ‘Opt-in’ to register as a donor.
o If a person’s wishes are unknown, healthcare professionals will approach the family for authorisation to proceed, based on their knowledge of the potential donor.
o Children ages 12 and above can be registered by parents on NHS Organ Donor Register.
o There are three types of donation: 1) After brain stem death 2) after circulatory death and 3) living organ donation.
o One donor can help several people by donating a number or organs and tissues. All donors can choose which organs and tissue they want to donate.
o The NHS Organ Donor Register is a confidential national database that holds the details of around 21 million potential donors.
o However, there has been a drop in number of:
-Deceased donors as family member are refusing to give consent.
-Number of useable organs as donors are becoming older and less healthy.
-Transplants (182 heart transplants were performed last year which is a 12% drop compared to the previous year despite the fact that the number of people waiting for new hearts has more than doubled in the past 5 years).
o In Wales 33 people died in 2012/13 while waiting for an organ transplant. In 2012, 237 people in Wales were on the waiting list for an organ. As such Wales became the first country in the UK to adopt new legislation in Dec 2015 when it switched to an ‘Opt-Out’ system for organ and tissue donation. This means if you haven’t registered a decision to opt-in or opt-out of organ donation, you will be treated as having no objection to being an organ donor. This is called deemed consent.
o Deemed consent applies to everyone over 18 and is expected to increase donors by 25%.
o The British Heart Foundation is appealing for an ‘Opt-Out’ system to make donation mandatory (unless expressed otherwise presumed consent) in England and Ireland in the future.
In the UK registration to become a donor is easily done by; online forms e.g. organdonation.nhs.uk/ calling the NHS Donor Line 0300 123 23 23/ text SAVE to 623223, applying in clinics etc.
There are also support groups encouraging donation on social media, Twitter @NHSOrganDonor #TimeToSign, Facebook facebook.com/nhsorgandonor, Youtube, etc.
Reasons For Families refusal of Organ Donation:
Theguardian- Organ donation rates held back by families refusing consent, study finds
Organ transplantation is a story of remarkable achievement and an ongoing challenge. Advances in immunosuppression have reduced the incidence of acute rejection, increasing survival rate but it has not affected chronic immune damage. Immunosupression needs to be improved to further extend the life with rejection tolerance still being the goal. Preservation techniques also need to be modified to reduce ischaemic (restriction of blood supply to the heart) injury that organs sustain. Nevertheless, the main factors limiting the success of transplantation continue to be the shortage of 1) suitable donor organs 2) family consent and 3) a lack of provisions for intensive care beds.
Although 96% of people in the UK believe donating organs is the right thing to do, 70% have not joined the donor register. As such the British Heart Foundation is encouraging people to sign the Organ Donation Register and make sure that family members know your wishes in the event of death. They are also urging England and Ireland to follow Wales by applying a ‘soft opt-out’ system, whereby ‘deemed consent’ is given unless specified otherwise.
Some religious groups and people however are opposed to the opt-out laws. Expressing fears that the new system is an intrusion and that ‘organ denotation should be free and voluntary.’ The ownership of our own bodies would be lost after death while going against families wishes could cause tension. In return The Church of Wales bishops have called on people to make a positive decision one way or the other. They stated that; “as Bishops we are wholeheartedly in favour of organ donation. It is love in action and a wonderful example of what it can mean to love our neighbours, especially those in need. Such generosity is a response to God’s generosity towards us.”
Factors such as referral of potential donors and families being approached about donation play a large role on increasing the number of donors. Doctors want to encourage a culture change so that talking about organ donation is normal so that families are confident they know their loved one’s wishes before death.
People are several times more likely to need a transplant in the future therefore we need to change people’s perception on organ donation while encouraging the nation to talk more about the issue. Communication campaigns, medical finance for research and an improved ‘opt-out’ legislation will help convert public willingness into action as a long-term solution to the crisis.