I have a genetic disease called Alport’s syndrome. It has caused me to become hard of hearing, and means my kidneys are likely to slowly deteriorate to the point where I will require a transplant.
That is why I, and other potential recipients of organs, are extremely supportive of the Private Member’s Bill just approved by MPs to fix organ donation in the UK. Under the new system, individuals will have to ‘opt out’ of donation of organs when they pass away, hopefully increasing the pool of potential donors. For the 6 500 people on the organ transplant waiting list, this change is welcome. Kidney patients on the list may have to spend hours a day on dialysis and the transformation in quality of life a new kidney can bring is astounding.
England currently suffers from a crisis of donation. NHS figures report that around 500 people die while waiting for an organ each year. The limiting factor for England’s mediocre transplant rate is, oddly, not infrastructure or funding: it is donors themselves. Roberto Cacciola, a kidney transplant specialist from NHS London said “we’ve been waiting a long time for this to happen. I have 400 patients on my waiting list for a kidney, of which I manage to transplant 120 a year. I would do more if more kidneys were available.”
This change will bring England into line with Spain, where an opt-out system, among other changes, has made it the world leader for organ transplants. There are concerns surrounding this new legislation that I want to address: the first being that opt-out systems don’t seem to have increased organ donor numbers in some countries that already use the system like Wales, or Sweden, where presumed consent has been in place since 1996. Wales saw no increase in the number of donors following the law, which is troubling, until you consider that for success stories like Spain, presumed consent was just one step towards a better system. Founder of the Organización Nacional de Trasplantes (ONT) Rafael Matesanz noted that “good organisation”, along with “continuous adaptations of the system” were the key to success. Presumed consent cannot and should not be the final solution to England’s problems.
There is another issue with presumed consent. Should the English public, by default, allow the NHS access to their organs after death? It might seem morally questionable to answer in the affirmative, except for the fact that surveys indicate that at least 80 per cent of people would consent to the process anyway. Daley Cross, a youth worker for Oxford Young Adult Clinic, also notes that families still play a role. Organs can only be harvested if the donor has “had the conversation with [their] loved ones” and their wishes are “known”. The state cannot just extract without the consent of a bereaved family: they must continue to respect the dead.
The presumed consent change is undoubtedly still a difficult conversation to have: both for recipients and for the English public. With luck, though, it’s not a conversation we will need to have for much longer. The Kidney Project hopes to reach clinical trials by 2020 to achieve the extraordinary feat of an artificial kidney. For now, sensible organ donation policy is an absolute necessity.
We must recognise the value of a programme that could save hundreds of lives a year.