Max and Keira’s law: New ‘opt-out’ organ donor system will be introduced in May

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Max and Keira’s law: New ‘opt-out’ organ donor system that presumes all adults agree to donate when they die will be introduced in May

  • Draft bill presented in Parliament today show it’ll come into force on May 20 
  • Named ‘Max and Keira’s law’ in honour of boy who got heart from car crash girl
  • System will involve ‘presumed consent’ concept to combat huge waiting lists
  • Officials hope the change will mean an extra 700 transplants each year by 2023

A new ‘opt out’ system for organ donation is to be introduced in less than three months, ministers have announced.

According to draft regulations to be presented to Parliament this morning, the new system to address the country’s major shortage of transplant organs will come into force on 20 May.

The new rules are to be named ‘Max and Keira’s law’ – in honour of a boy who received a heart transplant and the girl who donated it.

The system will involve a concept called ‘presumed consent’ – which means all adults will be considered to have agreed to donate their own organs when they die, unless they ‘opted out’.

Under the current ‘opt in’ system only people who are on the donor register, or whose family decide to donate the organs, have a transplant.

Max Johnson was saved by a heart transplant

The organ was given to him by nine-year-old Keira Ball following her death in 2017

Max and Keira’s Law, named after a boy who received a heart transplant from a girl who donated it, cleared the House of Commons last year. Max Johnson (left) was saved by a heart given to him by the family of nine-year-old donor Keira Ball (right) following her death in 2017

Health Secretary Matt Hancock said: ‘Too many people lose their lives waiting for an organ, and I’ve been determined to do what I can to boost organ donation rates.

‘So I’m incredibly proud of the action we are taking with this new law. This is an important step forward in making organ donation easier and more available to those who need it and could help save hundreds of lives every year.

WHO IS CURRENTLY ELIGIBLE TO DONATE THEIR ORGANS? 

Everyone can join the NHS Organ Donor Register regardless of age, as long as they: are legally capable of making the decision, and live in the UK.

Having an illness or medical condition doesn’t necessarily prevent a person from becoming an organ or tissue donor. 

The decision about whether some or all organs or tissue are suitable for transplant is made by a medical specialist at the time of donation, taking into account your medical, travel and social history.

There are very few conditions where organ donation is ruled out completely.

A person cannot become an organ donor if they have or are suspected of having Ebola, Creutzfeldt-Jakob Disease (CJD), active cancer, HIV or hepatitis C.

‘I pay tribute to the brave campaigning of families such as Max and Keira’s, whose tireless work on this issue has made a huge difference.’

There are more than 6,000 people currently waiting for an organ in the UK and three people on the waiting list die each day.

Officials hope the change will mean an extra 700 transplants each year by 2023, helping thousands of people across the UK waiting for a transplant.

But they stress that donating organs remains a personal decision. When the new system starts in May families will get the final say.

But doctors hope the ‘presumed consent system’ will mean more relatives give the go-ahead.

They say relatives often decide not to give permission for organs to be removed because they do not know what their loved one would have wanted.

The current system in England relies on people signing up to the organ donor register – and if someone has done so 91 per cent of relatives agree to a donation.

If they have not done so that drops to 47 per cent. Wales, where a presumed consent system has been in place since 2015, has the highest consent rates in the UK.

Anthony Clarkson, director of organ donation and transplantation for NHS Blood and Transplant, said: ‘We hope that the new law encourages more people to record their donation decision and talk about organ donation with their families.

‘It is important for people to know that they can do this at any time before or after the law comes into effect. There is no deadline for making your donation decision.’

Jacob West of the British Heart Foundation added: ‘More than 300 people in the UK are waiting for a heart or a heart and lung transplant in the UK, not knowing when or if they will receive their new organ. 

‘Max and Keira’s Law is a lifesaving change in legislation that will offer hope to these people and their families.’ 

BOY, 10, WHO INSPIRED NEW LAW 

Theresa May named the opt-out law Max and Keira’s Law in honour of heart transplant survivor Max Johnson.

The 10-year-old waited nine months for a new heart until he finally got one in August 2017. He was suffering from dilated cardiomyopathy, meaning he had to be kept alive by medical machinery. 

Theresa May named the opt-out law Max’s Law in honour of heart transplant survivor Max Johnson (pictured) 

His mother, Emma Johnson, campaigned for an opt-out system to help other children.

In a video message for MPs, Max said: ‘Please change the law… it will save lives like mine.’

Max’s story is said to have inspired more than 1,000 people to sign up to the NHS Organ Donation Register. 

His new heart was donated by car crash victim Keira Bell, nine, who also donated her kidneys and pancreas. 

Mrs Johnson, 47, said: ‘Keira saved four people. We will forever be indebted.’

Max was awarded the Pride of Britain’s Child of Courage award in October because of his instrumental role in changing the law on organ donation.

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