What might South Africa’s organ and tissue transplant programme look like in future? This was the question examined during a two-day workshop to develop a national roadmap to increase deceased organ and tissue donor referrals and donor family consents for transplantation.
Among the visionary ideas put forward is for every death in every hospital in the country to be assessed for its potential to help a patient through tissue or organ donation. And that the family should always be approached for consent.
Convenor of the workshop and transplant and critical care surgeon at Groote Schuur Hospital in Cape Town, Dr David Thomson, said that while “transplantation has the power to change lives”, South Africa’s transplantation system currently was “grossly underperforming”.
“It is something we can get much better at with limited investment and simply better co-ordination,” he told about 67 participants drawn from government and the private healthcare sectors, the Organ Donor Foundation and international experts who contributed their experience.
The factors impacting organ donation and transplantation range from lacunas in our legislation, to the absence of standardised policies across hospitals, to the lack of a single, transparent registry of potential donors and recipients, to the non-availability of research data including recording of death referrals for organ donation, to cultural and religious practices, and donor co-morbidities such as HIV-Aids, hypertension and pre-diabetes.
Transplantation of any kind is only performed in Gauteng, Western Cape, Kwazulu-Natal and Free State.
The schism between the public and private sector tissue and organ transplantation programmes looms large in the country and correlates South Africa’s racial divide in general service delivery, and especially in healthcare generally. It is easy to consider how transplantation might be perceived as a treatment reserved for a privileged class.
There are also critical legal and ethical considerations regarding how the country manages and distributes limited national resources of donor organs and tissue. For both donors and recipients to have confidence in transplantation, processes must be fair and transparent, especially in showing how organs are allocated to patients on regional or national waiting lists.
In 2016, there were only 72 deceased organ donors in South Africa out of a total population of 56-million, amounting to 1,31 donor per million of the population. The total number of solid organ transplants that came about from both deceased and living donors was 363 transplants.
By comparison, the United Kingdom had 21,52 donors per million people, with a total of 1401 deceased donors and 4482 total transplantations. There are 21,9 donors per million in Canada and 20,7 donors per million of Australia’s population. Brazil, which parallels South Africa in economic status, had a transplant rate of 14,6 donors per million people.
Among the debates which have emerged in recent years is whether South African policy should presume organ donation consent for its citizens unless they consciously decline to be donors or opt out of the policy. A presumed consent law has been successfully followed in Spain, which has one of the highest rates of organ donation.
But Thomson said it was not simply the change to the law which resulted in increased donations in Spain, but also having central co-ordination using more co-ordinators across the country, good access to ICU facilities, and in-built quality assurance systems. “They’ve managed to create a culture of routine donation. How do we change the culture in all our healthcare institutions?”
There are only 23 organ donor and recipient co-ordinators in public and private hospitals throughout South Africa.
To date, government has mostly been silent on these issues, and is yet to update transplantation regulations in terms of the National Health Act, a factor picked up by Professor Michael Pepper of the University of Pretoria and the SA Tissue Bank Association (SATiBA).
He said there were also discrepancies in official definitions of what constituted human tissue under health legislation.
Pepper said the country had witnessed “a dramatic decline” in tissue supply in recent years as a result of negative publicity, the stigma related to HIV-Aids which affected society attitudes and the confidentiality of patient records, and the change of responsibility for government mortuaries from the SA police services to department of health’s forensic pathology services.
Citing corneal transplants, he said there were 3000 patients awaiting a corneal transplant. In 2016, only 150 local corneas were transplanted, resulting in private ophthalmologists importing 1800 corneas from the USA and Europe at a cost per cornea of between R26,000 to R36,000. But medical aids restricted funding for corneas to the costs of local corneas of between R8,000 and R16,000.
“This implies exclusion of people who are not able to afford these sorts of costs in order to cover their healthcare,” Pepper said, adding that socio-economic status had a huge impact on organ and tissue donation and transplantation.
While various non-governmental organisations promote organ and tissue donation, the lack of a sustained, national communications programme was also highlighted as a huge hindrance to increased awareness among both potential donors and recipients.
Despite all the constraints, organ and tissue donation and transplantation offers significant social benefits for the country.
Heart transplantation is still overwhelmingly regarded among cardiac specialists as the gold standard to treat end stage heart failure.
It has been shown that kidney transplants can offset the significant costs of dialysis. Corneas, heart valves, skin grafts and bone replacements have a huge impact on the quality of life of many South Africans.
Said Thomson: “We need to acknowledge that both the private and state sectors are under-performing. Exploring organ donation is a marker of good end of life care – for me, it’s a standard of practice that we should have across all our institutions.”
Canadian academic and clinician Stephen Beed who is a councillor for the International Society of Organ Donation and Procurement, said organ donation is an uncommon occurrence, taking place within a set of stressful circumstances, and is also time sensitive. Supporting donation is often a low priority for most people.
He said ICU physicians and nurses often used the excuse that families were too distraught to have a conversation about organ donation.
“This is a completely bogus reason for not doing it in my opinion. I get that it is a difficult conversation. But in the words of a donor mom: ‘What right do you have to take that opportunity from me?’ The only good news that she and her family might have in the middle of a tragedy is that somebody else might be saved.
“We’ve discovered that the donation legacy is hugely important for donor families,” Beed said.
– RAY HARTLE