BHEKISISA | Could poor policies be behind our organ donation ‘crisis’?

In 2012, at 18 years old and in matric, Jenna Lowe could barely walk a few steps without collapsing because she frequently ran out of breath.

What was initially thought to be asthma turned out to be a type of blood pressure problem called pulmonary arterial hypertension which stops oxygen-carrying blood from being delivered to the rest of the body in time. 

It is a rare and incurable disease, but the drug epoprostenol can give a patient some reprieve. The medicine relaxes the blood vessels in the lungs and makes blood flow easier, which, in turn, puts less strain on the heart to pump out enough oxygen-rich blood. 

However, this drug wasn’t available in South Africa at the time. Lowe always had to have an oxygen tank close by and it became so hard for her to move around that she had to get a small scooter to attend her classes at the University of Cape Town.

When her family managed to get her epoprostenol on a compassionate care basis in 2014 — which means the medicine regulator allows for a medication that’s not available here to be brought into the country with special permission — breathing got easier but life didn’t. The medicine had to be pumped from a small portable device next to her bed so it could flow directly into the heart uninterrupted 24-hours a day. 

She needed new lungs. It soon emerged a double lung transplant was her best chance of getting back her life.

“We already had a difficult journey by that time so we thought the transplant would be the easy part,” recalled her mother, Gabi. 

But with only seven lung transplants done in South Africa in 2013, Lowe’s odds of receiving new organs were slim. 

When someone suffers a bad injury and their brain stops working (called brain death) or their heart no longer beats (called circulatory death), a ventilator can be used to help keep them breathing for a while. This means organs such as their lungs, heart, liver, pancreas and kidneys can receive oxygen, which keeps them working until the machines are switched off. During this time the organs can be removed for transplanting to save someone else’s life. 

In October 2014, Lowe started an online campaign called Get Me to 21, inviting all South Africans to her 21st birthday party on October 28 on one condition: they had to register as organ donors.

However, getting more people to be willing to have their organs go to a new body on death is only part of the solution to get the supply to match the demand. 

The transplant chain isn’t working, said Gabi Lowe.

 “I have so many questions about the system and no one can put it together for me. We need to know what's happening in the hospitals to understand what’s going wrong.” 

The National Health Act says from the age of 16 anyone can make it clear their organs have to be donated by writing it into their will or, with two witnesses present, writing a note and signing it or simply telling someone it is their wish. 

However, a medical law expert at the University of South Africa, Magda Slabbert, said “the conditions in the act are meaningless” because the rules it sets out are not practical. 

For example, for a will to be binding, it must be validated by the master of the high court. This can take many days, which, in the case of organ donation can be too long. Once the machines have been stopped, a heart should best be transplanted within two hours, while kidneys can stay viable for up to 12 hours. 

It’s also not a good idea to keep someone alive artificially (on a ventilator) for too long after their body has shut down , because the natural processes that kick in after brain death damage organs  so organs need to be harvested before the process has gone too far. 

Further, said Slabbert, “signing a document expressing your wishes in the presence of two witnesses makes it a living will, which is not legally recognised in South Africa”. A living will tells someone’s family only how they’d like their medical affairs to be handled after they die, but the family can override this document because it can’t be challenged in court. And because there’s no central database of such documents, neither a transplant team nor a patient’s next-of-kin can look up a living will and its conditions. 

Verbally agreeing your organs can be donated is also controversial as it may be difficult to prove you ever said so.

This means the only way to get permission for taking someone’s organs for donation is by asking the deceased patient’s family, regardless of whether they’re registered organ donors, Slabbert said. 

Registering as an organ donor is not legally binding. The same applies to having a sticker on your driver’s licence or an organ donation card in your wallet. 

However, the Organ Donation Foundation’s registration form does serve a purpose, said executive director of the nonprofit, Samantha Nicholls, as it drives up awareness and creates a record of people’s wishes to be donors. 

She explained: “We’ve made our database available to all transplant centres, so the medical team can approach the family with proof of their loved one’s wishes.”

In South Africa, donor organs came from less than two out of every million people in 2017. It’s among the lowest donation rates in the world. In Brazil, for example, organs could successfully be given to a recipient from about 16 people per million. In Spain, a country often noted for having the best legal system for managing donations, almost 47 people per million were donors. 

In a report from a 2019 workshop co-hosted by the South African Transplantation Society (Sats) and the International Society of Organ Donation and Procurement, experts said having so few actual donations is partly because people’s families don’t agree to it and partly because doctors aren’t referring patients for the process. 

When someone has been declared brain dead — after tests by two doctors in the intensive care or casualty unit confirm this — a specialist nurse in charge of the organ donation process at the hospital must be told there’s a chance for harvesting organs from the body. The nurse is called a transplant co-ordinator.

They must then ask the patient’s family for their permission.

But it’s a difficult decision for families, especially when they’re facing the loss of a loved one.

A 2020 study from the Western Cape shows in the private sector only about half the families who were asked to donate their loved one’s organs agreed. In the public sector even fewer families, or about a quarter, were prepared to carry out these wishes. Reasons ranged from families feeling reluctant to make a decision on behalf of someone else to religious and cultural beliefs. 

The Sats report noted that, on average, five patients were referred for possible donation per month the year before their survey. This means, on average, only 60 donors got into the transplant chain that year. 

In some countries, such as the UK and Canada, it is compulsory for doctors to refer patients for organ donation in the event of brain or circulatory death. 

But this is not the case in South Africa, and, hospitals without transplant programmes have no obligation to refer patients for organ donation.

There are only 21 hospitals in the country with transplant programmes (11 at state hospitals and 10 in the private sector), and only 26 trained transplant co-ordinators. At institutions where these roles don’t exist, nurses or junior doctors, without the specific background, have to step in. 

David Thomson, a transplant surgeon at Groote Schuur Hospital in Cape Town, said another reason for doctors not passing patients into the system is because they don’t have enough information about organ donation.

A 2011 study among medical students at the University of Cape Town found only about a fifth knew where to find information for potential donors and recipients, and less than 10% were registered donors themselves because “they had never thought of organ donation” or for religious reasons.

Thomson, who is also former president of Sats, said new doctors aren’t taught how to talk about organ donation with patients’ families.

“If a family doesn't understand the diagnosis of brain death, they can’t make an informed decision,” Thomson said.

“If you say something careless that will trigger them in the moment, they’re likely to say no.” 

Because not all hospitals have to participate in the organ donation process, not everyone has the same access to lifesaving transplants.

In the public sector, said Thomson, “there [often] aren’t enough beds in the intensive care unit and hospitals can’t afford the expensive organ support needed (such as dialysis machines) to keep [someone] alive while on the waiting list. There is definitely a cost-access problem.” 

The World Health Organisation recommends government sets out transparent rules that define how organs are allocated. However, Foster Mohale, the health department’s spokesperson, confirmed the state doesn’t have such guidelines. Instead, provincial and regional committees decide who receives donated organs. 

Private and public transplant centres share a waiting list. When an organ such as a heart, lung or liver is donated, it is allocated based on a points system that considers how long a patient has been in the queue, their age and what the chances are the transplant will be successful. 

Kidney donations are handled slightly differently, and also depend on the province’s approach. For example, at Groote Schuur Hospital in Cape Town, which also co-ordinates organ transplants for public hospitals in the Eastern Cape and Northern Cape, the centre from where the donor comes receives one of the pair of kidneys, and the other goes to a patient on the national waiting list. 

At Charlotte Maxeke Hospital in Johannesburg, which co-ordinates organ transplants for other public hospitals in Gauteng, one of the donor’s kidneys goes to a private hospital and the other is given to a public hospital. 

However, despite this seemingly fair distribution, access to organ transplants isn’t equal between the two sectors. 

A report from the South African Renal Registry notes 54% of kidney transplants were performed in the public sector in 2020, in line with similar trends from Sats data for 2018. 

However, untangling the collapsed data paints a different picture. In the Western Cape, more than double the donated kidneys went to the public sector. In Gauteng though, where most organ transplants are performed, almost 90% of organs went to the private sector, including all livers, lungs and hearts. Only three out of 10 kidneys went to the public sector. 

Nationally, seven out of 10 organ recipients were in the private sector.

The department of health does not have its own data or a national register of donors and must rely on other organisations for information. Mohale said the department can’t confirm whether the data is accurate, but they’re “in the process of taking ownership of statistics in the near future”. 

Transplant surgeon at the Wits Donald Gordon Medical Centre and incoming Sats president Francisca van der Schyff said the lack of data and transparency surrounding organ allocations reduces the public’s trust in the health system. 

She said all hospitals should prioritise organ donation, but said it is difficult to motivate why institutions should invest in it without accurate data.

In response to questions about developing a national transplant policy, Mohale told Bhekisisa there are only “draft regulations on transplants that will cover living and deceased organ donations and allocations”.

There’s no magic wand, experts said.

However, countries around the world are trying to copy Spain, which is considered the gold standard for organ donation. The country has managed to increase donation rates almost 1.5 times since 1989, despite having an ageing population, many patients whose lifestyles push them towards organ failure and less money for a transplant programme than other countries in Europe.

In South Africa an opt out rule applies, which means everyone is a potential organ donor unless they specifically say that they don’t want to be. However, the high donation rate is not simply because of this, writes Rafael Matesanz and Beatriz Domínguez-Gil of the Spanish transplant programme, but rather because the focus is on what keeps people from agreeing to donation and working to change perceptions. For example, their national transplant policy focuses on teaching hospital staff to identify potential donors and placing transplant coordinators who are trained to ask for families’ approval in every hospital.

Saying goodbye

On December 10 2014, the Lowes heard a pair of lungs had become available and Lowe was airlifted from Cape Town to a private hospital in Johannesburg.

After the surgery, though, she had bad seizures and her stomach was paralysed, her mother said.

“Jenna couldn't eat and was being fed through a tube.” 

After 185 days in intensive care, her body finally gave in. It was four months before her 21st birthday. 

“I’d fallen asleep by her bed and she reached out her hand and put it on my forehead. She looked at me and said, ‘Thank you, Mommy.’ And shortly after she was gone.”

This story was produced by the Bhekisisa Centre for Health Journalism. Sign up for the newsletter.