On 15 March, the Organ Donation (Deemed Consent) Bill received Royal Assent. Known as Max and Keira’s law, it honours the legacy of a young girl who donated her heart and the boy who received it.
The Act means that now, an individual in the UK must opt-out of organ donation, rather than opt-in. It is hoped that the new law will mean that less people die waiting for organ transplants.
However, despite the introduction of this potentially life-changing Act, leaving no part of society untouched, COVID-19 has severely impacted organ transplants. Figures have plummeted to their lowest since 1984. Many subsequently fear that this will lead to a surge in mortality rates among those awaiting transplants.
According to statistics released by the UK government, prior to the Act, while 80% of people in England supported organ donation, only 38% had actually opted in. The government also found that if families were unaware of a loved one’s organ donation preference, less than half would give consent.
At present there are more than 6,000 people on the UK Transplant Waiting List. However, each day people die awaiting a transplant. In 2019, this figure was over 400 and a further 777 were taken off the list due to a decline in health, resulting in further deaths.
Unfortunately, only 1% of people who pass away in the UK die in circumstances that make them eligible to donate. That being said, over the past few years more people have been opting-in for organ donation. In 2019, the NHS Blood and Transplant released its annual Organ Donation and Transplantation Activity Report, which showed that 1,600 donated their organs. This is despite a 4% drop in eligible donors.
The legislation was instigated through a campaign started up by nine-year-old Max Johnson. The young boy was a recipient of a heart donation from nine-year-old Keira Ball who had died in a road accident in August 2017.
He had been on the urgent organ waiting list for eight months, after receiving the life-threatening diagnosis of dilated cardiomyopathy. Awaiting his transplant, accompanied by his family he rallied for the opt-out law change.
The new legislation means that all adults within the UK will be classified as organ donors, unless they choose to opt-out, or they are not considered eligible for donation.
Exempt from this automatic opt-in system are those who:
However, organs required for novel, or rare transplants, as well as Advanced Therapy Medicinal Products (ATMP) are the exception to the rule. In these cases, express consent is still required
Speaking about the boy’s campaign for change, Former Prime Minister Theresa May said: “When I read your inspirational story, I knew I had to act to change the organ donation rules to an opt-out system”.
On Wednesday 20 May, Matt Hancock Health Secretary added: “Today we celebrate a milestone for organ donation as we move to a new system of deemed consent in England which will mean hundreds more lives could be transformed each year. I want to pay tribute to Max, Keira and everyone else who campaigned for this change”.
Max and Keira’s law will also reportedly help improve the BAME “silent” donor crisis. According to figures released by the National Institute of Health and Care Excellence, those from South Asian and Black ethnic backgrounds are 7.2% more likely than those from White, mixed or other ethnic groups to develop Type 2 Diabetes.
However, the issue is that BAME individuals are less likely to donate organs. This is significant because an organ has a higher chance of being accepted by the body if it has the same genetic or ethnic match as the recipient. Max and Keira’s law will aid this issue by helping to diversify the donor pool.
The NHS also hopes to close the BAME donor gap by introducing a categorisation system based on risk factors. This will consider the patient’s age, race and tissue type, and help to tackle donor inequality.
Back in April, NHSBT warned that the system was struggling with the added pressure of the crisis. Lack of intensive care beds was a significant factor causing strain. In addition to this, currently fewer donor organs are available due to a decrease in road and industrial accidents. Further dangers are also presented to patients awaiting transplants in hospital, due to the requirement for them to be immunosuppressed. This means patients are more likely to contract COVID-19. On top of this, The BBC reported that last month only six of the UK’s 24 kidney transplant centres were open.
As a result, NHS Blood and Transplant (NHSBT) analysis recently showed that only 99 transplant operations were performed in April, down 145 from March. Speaking about the consequences of this decline, Professor Peter Friend, Director of the Oxford Transplant Centre, told BBC Radio 5 Live: “Every transplant that does not take place now means that a patient somewhere, and at some point, never receives their transplant”.
However, forecasting positive change, John Forsythe, Medical Director for Organ Donation at NHSBT said: “We are now seeing more potential organ donors being referred and transplant centres are opening again or looking to put in place safeguards to allow an expansion of their service. We will work hard to support families and clinicians to facilitate organ donation where possible, enabling more of the thousands of people waiting to have their transplants”.
Ultimately, with COVID-19 hospital admissions flattening over the last few months, it is hoped that hospital supplies will be redistributed to save the lives of those on the Transplant Waiting List and that by 2023 an additional 700 transplants will be delivered each year.