Last year nearly 400 people died waiting for a transplant, says Candida Moss. ‘Presumed consent’ could have saved their lives
I was diagnosed with chronic kidney disease in August 1996, when I was 17. Twenty minutes before the diagnosis I was on top of the world: I had just passed my A-levels and was looking forward to a long summer holiday before going up to Oxford. Then my kidney specialist informed me that without treatment I would have renal failure within three months.
In July 2002 the specialist said that I had between two and four years before I would need dialysis or a transplant. Even though I’d always known this was a possibility, I had never really thought about what needing a new kidney meant. I had learnt to deal with the pain and inconvenience of frequent hospital visits for infusions of antibodies or iron, but now I was confronted with the truth: I had only a few years either to find a kidney or go on dialysis.
My mother instantly offered to be a ‘live donor’. This is someone who provides organs that could be called ‘superfluous’, like a kidney, part of the liver or part of the lungs (as opposed to a non-heartbeating donor, who — according to the present legal framework — has opted in to the organ donor programme and wishes to donate all their organs when they die). In kidney transplants it is imperative that the genetic make-up of the donor matches that of the recipient and that the donor is in perfect health, so my mother began the intensive testing required. The testing took roughly 18 months and included kidney biopsy, scans, heart, liver and lung tests, numerous blood tests and psychological evaluations.
A couple of weeks before the results of the final tests, my mother developed severe pneumonia and the doctors discovered cancerous cells in her lungs. Just two hours after the doctors informed her that she had lung cancer, she received the letter from the transplant team confirming that she could be an organ donor. Except, of course, that cancer patients can’t be organ donors. The first thing she said was, ‘Darling, I’m sorry I can’t give you a kidney.’ Honestly, I don’t care about the kidney from my mother; I just want her to get better. But without a transplant I look forward to a life of constant dialysis: at least three to four times a week for anything between four and eight hours.
I know people worry about organ donation. And most of my friends who are still in their twenties, as I am, don’t think about death, disease and organ donation anyway. My boyfriend said that he hadn’t signed his organ donor card because he was ‘kinda hoping not to die’. What, never? (I made him sign it.) But for those who want to donate their organs, the biggest barrier is the fact that their relatives don’t know their wishes. UK Transplant’s research shows that there is a 43 per cent refusal level by relatives who didn’t know the donor’s wishes, whereas objection is virtually unknown if family members are aware that their loved one wanted to donate. And the best way to make your wishes known is to sign up to the NHS organ donor register.
I also know that people are worried by what might happen when they donate organs, but it’s not complicated. After death has been confirmed by brain stem tests, the body of a person who has opted into the organ donor programme is kept on a ventilator until their organs can be removed. The reason for this is that the organs deteriorate quickly without an oxygenated blood supply. Grieving relatives will see no change in the body of their loved one and open-coffin ceremonies can still take place. All the major religions support organ donation and many actively promote it.
The trouble is that although 90 per cent of people in the UK support organ donation — according to a survey conducted in 2002 for UK Transplant (which is a Special Health Authority within the NHS with a UK-wide remit to ensure that donated organs are matched and allocated in a fair and unbiased way) — the NHS organ donor register has only 11.5 million people registered willing to donate. It sounds a lot but it’s only 24 per cent of the adult UK population.
At present 5,847 people are waiting for an organ transplant and most, like me, are waiting for a kidney. In 2002–2003, according to UK Transplant, 740 people donated kidneys, 1,399 had kidney transplants but those waiting for transplants numbered 5,020. Even though more than half the UK population supports a change in the Human Tissue Act 1961 on how human organs can be obtained for transplant (according to a survey carried out on behalf of the National Kidney Research Fund), and most people are aware that there is a shortage of donor organs in the UK, on 1 July 2004 a motion in the Commons to change the law from one of ‘opting in’ to one of ‘presumed consent’, or opting out, tabled by the Liberal Democrat Evan Harris, was rejected by 307 votes to 60.
I can’t help wondering if any of those 307 MPs were aware that more than 50 per cent of their constituents feel quite differently about this matter. A ‘presumed consent’ policy would allow doctors to assume that a patient’s organs can be used for transplant unless they or their relatives have stipulated otherwise. It would be so much simpler. And as a safeguard, in most countries that operate an opt-out system, health-care professionals still ask the family for their consent. They do this in Spain, the only country to have sustained a year-on-year increase in organ donation for the last ten years. I wish the opt-in option had become law here. The Health Secretary John Reid said that the decision should be left to individuals and that it was ‘not for this Parliament ...to impose upon [individuals] a requisition of their bodies after death for the state’. I thought the whole business was about donating organs to save lives, not about donating organs to ‘the state’.
Perhaps the MPs who voted against didn’t do their sums. If I don’t get my transplant I will have to go on daily dialysis, and each patient on dialysis costs the nation up to £35,000 a year. The total cost of dialysis accounts for just over 1 per cent of the NHS budget for England (£56 billion for 2002–2003). There are about 19,000 people on dialysis at present and the number rises by about 7 per cent annually — costing an additional £45 million. If I had a transplant, the cost would be £20,000 in the first year and then £6,500 for each of the next four years, a total of £46,000. A patient on dialysis for the same period would cost up to £175,000. Go figure, as they say.
My own situation would be easier if there were other suitable kidney donors in my family, but there aren’t. I wish I had an illness that didn’t depend upon someone else giving something up. A transplant is not a cure, but it would enable me to live a relatively normal life. The prognosis for transplant patients is far better than it is for dialysis patients, because dialysis replaces only a fraction of kidney function.
Last year nearly 400 people died waiting for a transplant. I know there are arguments against organ donation and I know that terrible things have happened, that organs have been removed without permission. But if ‘presumed consent’ or opting in became the norm in the UK — as it is in Belgium, Austria, Sweden and Spain — then the world of organ donation would, I think, be safer. All hospitals would need to do would be to check whether the potential donor’s name was on the register; relatives would be reassured; I would have a greater chance of receiving the kidney I need and I might, then, even be able to have children.
UK Transplant Week begins on 18 July. The NHS organ donor register is on 0845 60 60 400 or www .nhs.uk/organdonor.