Thousands of people in South Africa are waiting for a life-saving organ transplant, but our very low donation rates mean many won’t get a transplant in time, writes Elri Voigt for Spotlight, who asks the experts why our donation rates are so low and how to change this.
In 2002, Rentia le Roux was devastated when she was told her kidneys were failing. “My children still need me…what are we going to do?” Le Roux recalls saying to her doctor. After a long journey trying to manage her kidney failure, she eventually got a kidney from her sister in 2011.
Le Roux, now chairperson of the Western Cape Transplant Sports Association, is one of the lucky ones, she told Spotlight recently before leaving for Germany to take part in the 2025 World Transplant Games.
“So many people are on the list waiting for an organ … it can take many years,” she said.
Incomplete data
While there isn’t a co-ordinated, centralised database of everyone in South Africa needing an organ transplant, various groups collect data, said Professor David Thomson, an abdominal transplant surgeon and a critical care sub-specialist. Thomson also heads Transplant Centre of Excellence Project at Cape Town’s Groote Schuur Hospital.
“Various entities do collect levels of data, but it’s not very centralised and co-ordinated …we also have the Renal registry that’s trying to track the number of people on dialysis, which is a good source of information,” he said.
The Renal registry is a not-for-profit database that collects and publishes data on dialysis and transplant patients, an initiative of the NPO South African Nephrology Society, which aims to further the field of nephrology and improve patient care.
The society estimates that in 2022, slightly more than 9 000 people – public and private – were receiving “kidney replacement therapy”, which were either medications to help kidney function, dialysis or a kidney transplant.
A report by the South African Transplant Society, an NPO seeking to advance tissue and organ donation and transplantation, estimated that in 2021, across private and public hospitals, 2 586 people were on a waiting list for a lifesaving organ. Of those, 2 382 were awaiting a kidney, 52 needed a liver, 108 needed a heart transplant and 44 needed a lung.
But in the same year, the report recorded only 229 transplants countrywide.
South Africa does not have a good organ donation culture, said Professor Mignon McCulloch, Head of Paediatric Nephrology and solid organ transplant at the Red Cross War Memorial Children’s Hospital. In fact, according to McCulloch, and other experts, South Africa has some of the lowest transplantation rates in the world.
While we couldn’t find any straightforward ranking system of organ donation rates, reports by the Global Observatory on Donation and Transplantation (GODT) provide some insight into how some countries compare. In 2017, show data from the GODT cited in this 2020 study published in the South African Medical Journal, South Africa had 91 deceased donors, which is a rate of 1.6 per million. By contrast, Spain, regarded as having one of the highest rates of organ donation in the world, had 2 183 deceased donors, a rate of 47.05 per million.
How it works
Organ donation is broadly classified into living donation and deceased donation.
There are two scenarios where someone can become a donor. The first is when a healthy person donates an organ without which they can live a normal life, like a kidney. The second is when someone has been declared brain dead and is on a mechanical ventilator or when someone has experienced circulatory death – meaning their heart has stopped beating and “futile non-beneficial treatments have been stopped”. The latter is less common in South Africa.
For deceased donation from a brain-dead patient to take place, the potential donor needs to be in an ICU facility on a mechanical ventilator and referred by their clinical team to a transplant co-ordinator, said Thomson. If that person is eligible, then the transplant team needs permission from the next-of-kin who ultimately have the final say, even if the potential donor is registered as a donor.
“Organ donation can only happen if someone is on a mechanical ventilator in the end-of-life care pathway, so that is always a complicated and emotional discussion,” he added. “Tissue donations like corneas, bones, skin, can happen at the mortuary afterwards and there’s a slightly longer period for when these can be successfully recovered, but all donation still requires you to have conversations with and get permission from grieving families.”
Juggling resources
McCulloch describes organ donation as being a bit like “a silent Cinderella”, until someone needs a lifesaving transplant, “and then people suddenly start asking questions about why, why don’t we have more transplantation?”
One reason is the allocation of resources and competing priorities within the healthcare system.
Thomson said organ transplants are a “health intensive resource”, and it’s important to acknowledge that it exists in the context of an already overburdened healthcare system. There is a Deputy Director of Dialysis and Transplantation within the National Department of Health, Thomson added, but there isn’t an “overarching central co-ordinating authority supporting deceased donation”.
Instead, it is driven by hospital groups and within the provincial healthcare departments by healthcare workers.
Adding to this, McCulloch said doctors are always having to “juggle resources” and if there is only one bed available in an ICU, weighing up whether to give it to someone who will potentially become an organ donor or someone with pneumonia and is likely to have a good outcome, is difficult.
Another challenge is the limited number of surgeons, physicians, and hospitals with the skill and equipment to perform an organ transplant. This Strategy Roadmap Document by the South African Transplant Society list 21 transplants centres across the whole country – 14 of them offer kidney transplants, six offer heart transplants, four offer lung transplants, four offer liver transplants, and only one offers pancreas transplant.
One can save seven
Earlier this year, an unused room in Tygerberg Hospital got a face-lift and a new purpose from a student-run medical non-profit.
The initiative, called Save7, was kickstarted by a conversation about kidney donation on Stellenbosch University’s Medical Campus. Its initial goal was to raise awareness – particularly among students – that one donor can save up to seven lives. And if tissue like corneas, heart valves, bone and skin are donated, one person can improve the lives of around 50 people.
Jonty Wright, who co-founded Save7, told Spotlight that the founding group of four has now grown to more than 200 across universities countrywide. Among others, the group created a Lifepod to solve a transplant-related problem at Tygerberg Hospital.
Doctors and staff involved in transplantation at the hospital were citing competing resources as the reason behind low referral rates of potential organ donors by healthcare providers.
The solution posed by Save7, professors on the campus and some of the doctors involved with transplantation, was to create a designated bed space for patients who are brain dead and are potential organ donors. The hope was that referrals for potential organ donations would be increased.
The room, Wright said, was an old minor operating theatre and storeroom belonging to the orthopaedic surgery department and situated in an ideal spot – in a corridor between the emergency medicine and trauma admissions.
About three months ago, after fundraising efforts and backing by the Health Foundation and other partners, the Lifepod opened.
The room currently holds a hospital bed, a ventilator on lease from the surgical department, vitals monitor, cardiac monitor, infusion pumps, emergency trolley, fridge and crash cart – everything needed to keep a brain-dead person’s body comfortable and allow the doctors to counsel their family about potentially donating their organs.
So far, said Wright, referrals of potential candidates for organ donation at Tygerberg have gone up by 500%, but at the time of the interview, none of the next-of-kin had consented to donating their loved one’s organs. (Data on this have not yet been published).
This ties on to another layer of complexity around organ donation, the reasons why next-of-kin don’t always give permission.
Need for better education
Samantha Nichols, executive director of operations for the Organ Donor Foundation, an NGO advocating for organ donations, said the problem isn’t so much a lack of awareness of organ donation as a lack of good education around it. She said this affects everyone, including healthcare workers.
Nichols said it was “almost as if the stars have to align” for a deceased donor to donate their organs, because of how many steps and doctors are involved in the process.
“When a person is sent to an ICU or trauma unit, the team of doctors working on that person to save their life is a totally different team from the transplant team,” she said. A transplant team is only ever called in if a potential donor has been declared brain dead by two different doctors who aren’t part of or affiliated with a transplant team.
“Only then can they start the process of talking to the family, and then they still need to get consent from them before the organs are removed,” she said.
The opt-in versus opt-out debate
When it comes to consent for organ donation, South Africa has what is referred to as an opt-in system, which is when someone must provide explicit consent of their desire to donate an organ. An opt-out system means all adults are automatically considered organ donors after death, unless they explicitly withdraw consent beforehand.
There has been some debate about whether switching to opt-out systems would improve organ donation rates. One recent study, in which researchers analysed deceased donor rates in five countries that had switched from an opt-in to an opt-out system, did not find an increase in donation rates.
“Unless flanked by investments in healthcare, public awareness campaigns, and efforts to address the concerns of the deceased’s relatives, a shift to an opt-out default is unlikely to increase organ donations,” the researchers concluded.
A 2024 editorial in The Lancet made a similar point, saying “a simplistic switch to the ‘opt-out’ model is alone not sufficient to boost donation”. Instead, it lists the three components that makes Spain’s transplant programme so successful.
“A solid legislative framework, strong clinical leadership, and a highly organised logistics network overseen by the National Transplant Organisation.”
An opt-out system is also unlikely to work well in South Africa from a legislative perspective, since it might be seen by some to impinge upon an “individual’s rights to personal autonomy and bodily and psychological integrity”, as argued in this article in The Conversation.
The experts to whom Spotlight spoke instead point to several other changes that could be made to improve donation rates.
‘Everyone can do a bit better’
The responsibility around improving organ transplantation rests on us as society and as a co-ordinated healthcare system, according to Thomson.
“Everyone can do a bit better…and I don’t think you want to make it one person’s responsibility for the performance. It’s actually a collective and how we work together… a lot of things like supporting donation link into good palliative care services, and that should be something we’re offering to everyone.”
Thomson advocates for upskilling healthcare workers to be better able to counsel families during end-of-life care, not necessarily just around organ donation but around “engaging humanely end of life and navigating that complexity with them”.
He recommends making counselling of grieving families and palliative care discussion a hospital system issue, instead of an individual responsibility, by adding it to institutional operating standards. “And then you actually need to audit it, measure it, reflect on it and monitor the outcomes,” he said.
Suhayl Khalfey, a Save7 co-founder, said now that the Lifepod was ready to use, their focus was shifting to educating people about the importance of organ donation. Save7 is compiling a database of different religious leaders to help counsel families uncertain about their faith’s stance on organ donation, he added.
Even children can learn about organ donation.
The non-profit organisation Transplant Education for Living Legacies (TELL) recently launched an educational campaign in South Africa aimed at children in the five to 11 age group. The initiative, called the Orgamites Mighty Education Programme, is an international child health education programme originating from Canada.
See more from MedicalBrief archives:
Gauteng Health flags organ donor scarcity in SA
Medical students tackle SA’s organ donation crisis
State launches organ donation awareness campaign
Transplant recipients fight declining number of SA organ transplants
The complex reasons behind SA’s organ donor shortage