Health

New law on organ donations could save thousands like 12-year-old Max


When nine-year-old Keira Ball suffered fatal injuries in a road accident in August 2017, the decision to donate her organs was an “easy” one, her father Joe says.

“It was a relief to know that something good could come from our loss. Keira was a very loving, caring girl who loved life, and if she could ever help someone she would.”

Keira’s organs went on to save four lives: her kidneys were given to two adults, her liver to a baby and her heart to another nine-year-old – Max Johnson, who had been on the urgent organ waiting list for eight months after being diagnosed with a life-threatening form of dilated cardiomyopathy, where the heart does not pump blood properly.

While still in hospital waiting for his new heart, Max and his family campaigned for a change in the organ donation law to an opt-out system in England, following the example of Wales, where adults are deemed to consent to organ donation after they die unless they explicitly decline to do so. Last week, the government announced the new law – known as Max and Keira’s law – will come into effect on 20 May, subject to parliamentary approval.

Max Johnson has campaigned for the change, following his own heart transplant.



Max Johnson has campaigned for the change, following his own heart transplant.

Campaigners – including Max himself, now a healthy 12-year-old – have welcomed the news, arguing that it will improve the survival chances of around 6,000 people currently waiting for organs. Last year, 400 patients died while waiting for a transplant, and a further 777 were removed from the list, most of them because their condition had deteriorated to the point where they had become too ill to undergo transplants. The government has said that the new law could see up to 700 extra transplants a year by 2023. Experts, however, while welcoming the change, caution that the law in itself is not going to automatically solve England’s organ shortage.

“It’s not a silver bullet,” says Professor Gurch Randhawa, a public health expert at Bedfordshire University. “As a society, we still need to do much more to normalise organ donation to improve consent rates.”

This is crucial, he points out, because the new system will be a “soft” opt out: as with the current system, bereaved families will still have the final say on their deceased loved ones’ organs, and can refuse permission for them to be donated, even if they’re signed up to the donor register. Currently, more than three families a week say no to organ donation because they don’t know their loved ones’ wishes – even though more than 80% of the population say they would definitely donate or consider donating their organs, according to NHS Blood and Transplant (NHSBT).

Professor Ronan O’Carroll, a psychologist at Stirling University, agrees that the law change is not “the simple solution it appears to be. Poland, for example, has an opt-out system and it has quite low organ donation rates.” Besides, he says, there is concern that a small minority “may react against the new system and opt out even if they’re signed up to the register, because if their consent is presumed, they don’t see organ donation as a gift any more – they see it as government ownership.”

Both experts point to the example of Spain, which has the highest rate of deceased organ donation in the world – a feat often attributed to the “presumed consent” system for organ donors it has had since 1979. Randhawa says: “When Spain introduced the opt-out system, they didn’t see any changes in donation rates for at least 10 years, because it took them 10 years to get the public education right, the hospital capacity right, the family requesting right.”

Nevertheless, he is hopeful that the law will be a catalyst for change. Or, as Anthony Clarkson, Director of Organ and Tissue Donation and Transplantation at NHSBT, puts it: “By changing the legislation, we’re encouraging people to make a decision about whether to be a donor and have a conversation about their wishes with their family.”

So far, opt-out has shown encouraging results in Wales, which now has the highest organ consent rate of all the UK nations, having climbed from 58% in 2015 before the law changed to almost 80%. This is not so much because of the law change in itself, Randhawa says, but increased public awareness, which is also under way in England thanks to a boost in NHSBT’s budget to promote the new system – it has been given an additional £10m – and the publicity it has generated.

The media has a major role to play in normalising the act of organ donation, Randhawa argues, and should learn from Spain, where national and local newspapers regularly feature stories about donors and donor families, and rarely focus on transplant recipients. In England, the opposite is true, he says – stories of people who have had lifesaving transplants or who need them dominate donation coverage: “That sadly reinforces people thinking ‘OK, I’ll get a transplant if I ever need one,’ [rather than seeing themselves as potential donors.]”

Keira Ball’s organs have been donated to four people.

Keira Ball’s organs have been donated to four people.

That’s why it’s so important, Randhawa says, that the new law – which was originally known only as “Max’s law” – now carries the name of Max’s lifesaving donor, thanks to lobbying by Max, his family and Keira’s family. Max hopes that the name change will encourage other children to ask their parents about Keira, and grow up to think of organ donation as normal. Every year, on the anniversary of his organ transplant – his “heartaversary” – both families meet to celebrate on what is also a day of great sadness, as it marks Keira’s death. “It’s really sad to think this little girl with an amazing family died in a car crash,” Max says. “But she saved my life, and that’s incredible.”



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