By Harriet Rosanne Etheredge, June Fabian, Mary Duncan, Francesca Conradie, Caroline Tiemessen, Jean Botha
Waiting for legislative change in organ transplantation in South Africa feels like “Waiting for Godot”, especially considering the extreme shortage of donor organs in our country. Anyone who has seen Samuel Beckett’s iconic play by that name will appreciate that as the curtain comes down on the final scene, the main protagonists are still waiting for the elusive Godot personage to make an appearance, to no avail.
Changing our transplant laws is often mooted as the panacea for South Africa’s organ shortage ills – thereby enabling more people to receive life-saving transplant operations. As authors, for many years we have collectively attended numerous workshops and meetings to advocate change in transplant legislation and policy – without success. As this legislative impasse continues to frustrate progress, our clinicians at Wits Donald Gordon Medical Centre are faced with children suffering from severe liver disease who die whilst waiting for organs. As a transplant centre with the necessary capacity and expertise to perform liver transplants in children, and an increasing pool of willing living donors who are also HIV positive, we reflected on our current practice and how we could respond appropriately to the increasing need for care.
In 2017, this resulted in a world first, where our team transplanted a segment of liver from an HIV positive mother into her HIV negative child. This was announced in a Press Conference in 2018, which can be seen here. The child had been on the deceased donor liver transplant list for 181 days – four times longer than the average waiting time for transplantation at our centre – and a direct manifestation of our organ donor shortage in South Africa. We had considered other HIV-negative living donors for the child and none were suitable. The HIV-positive living donor was our only reasonable option, the alternative being that the child would have died. Moreover, the child’s mother repeatedly requested the option to donate, and refusing this request in the face of the child’s fast-deteriorating health status was becoming untenable. Now, almost two years since this initial transplant took place, our donor mother and recipient-child are both doing well, however the HIV status of the child is equivocal, and it may be possible that the child is HIV-negative. We have utilised currently available HIV science to its limits, and have not yet been able to make a definitive determination as to HIV status.
This new option for transplantation raises many uncertainties and ethical issues, primary amongst which are debates about the autonomy of HIV-positive parents who wish to be living liver donors for their HIV-negative children, and the best interests of those children. Over three decades, HIV activism worldwide has prioritised reducing HIV-related stigma and ensuring that HIV-positive status does not preclude people from making healthcare choices – like donating an organ – or exercising basic human rights – like having children. The case of HIV-negative children receiving HIV-positive donor livers may raise more complex questions, which directly relate to their future and how they will live their lives. These questions take on a greater prescience when one considers that, at present, we cannot draw a definitive conclusion as to the HIV status of our child. The new questions we are now grappling with involve how to disclose an uncertainty, and to what extent we involve the recipient-child in treatment decisions in future, as they grow up and assume more personal autonomy.
This first HIV-positive to HIV-negative living donor liver transplant was undertaken with full institutional review board approval, and instituted as a research project. This enables us to fully explore the potential of this type of transplantation in a collaborative and transparent manner. Through the extensive networks we have established during this project, we are hoping to be able to answer some of the lingering questions we now face, and to promote new innovations – for instance in HIV science and medicine.
Perhaps the most important point here, though, is that with innovation – even if the outcome is imperfect – these children will live, and they will be given a chance to grow up and to make their own choices about the kind of lives they wish lead in future. This innovation also highlights the importance of clinicians as advocates and activists for their patients, responding to a definitive need. This transplant is not the first example of the role clinical advocacy can play in innovation, as was clearly demonstrated in the fight to roll-out antiretroviral therapy in South Africa. It is possible that if activists and advocates had simply waited for legislation to change, the roll-out of antiretroviral therapy would have been much delayed than it was. If we wait for legislation to change, if we stop innovating and choose rather to rely on political structures in order to legislate measures that may increase the number of donor organs available, we will lose many lives in the process.
Author(s): Harriet Rosanne Etheredge1,2, June Fabian1,2, Mary Duncan1, Francesca Conradie2,3, Caroline Tiemessen4,5, Jean Botha1.6
- Wits University Donald Gordon Medical Centre, Johannesburg, Gauteng, South Africa
- Internal Medicine, University of the Witwatersrand School of Social Sciences, Johannesburg, South Africa
- Clinical HIV Research Unit, Johannesburg, South Africa
- Centre for HIV and STIs, National Institute for Communicable Diseases, Johannesburg, South Africa
- University of the Witwatersrand Faculty of Health Sciences, Johannesburg, South Africa
- Department Surgery, University of the Witwatersrand Faculty of Health Sciences, Johannesburg, South Africa
Competing interests: None