Inequality and ethics in paediatric HIV remission research: From Mississippi to South Africa and back

ABSTRACT

In 2013, physician-researchers announced that a baby in Mississippi had been ‘functionally cured’ of HIV [Persaud, D., Gay, H., Ziemniak, C. F., Chen, Y. H., Piatak, M., Chun, T.-W., … Luzuriaga, K. (2013b, March). Functional HIV cure after very early ART of an infected infant. Paper presented at the 20th conference on retroviruses and opportunistic infections, Atlanta, GA]. Though the child later developed a detectable viral load, the case remains unprecedented, and trials to build on the findings are planned [National Institute of Allergy and Infectious Diseases. (2014). ‘Mississippi baby’ now has detectable HIV, researchers find. Retrieved from http://www.niaid.nih.gov/news/newsreleases/2014/pages/mississippibabyhiv.aspx]. Whether addressing HIV ‘cure’ or ‘remission’, scrutiny of this case has focused largely on scientific questions, with only introductory attention to ethics. The social inequalities and gaps in care that made the discovery possible – and their ethical implications for paediatric HIV remission – have gone largely unexamined. This paper describes structural inequalities surrounding the ‘Mississippi baby’ case and a parallel case in South Africa, where proof-of-concept studies are in the early stages. We argue that an ethical programme of research into infant HIV remission ought to be ‘structurally competent’, and recommend that paediatric remission studies consider including a research component focused on social protection and barriers to care.

KEYWORDS:

• ‘Mississippi baby’
• HIV cure
• HIV remission
• ethics
• inequality

Disclosure statement

No potential conflict of interest was reported by the authors.

Notes

1 In 2008, the case of Timothy Brown, known as ‘the Berlin patient’, made international headlines when doctors announced that Brown had achieved ‘long-term control’ of his HIV infection after receiving an allogeneic stem-cell transplant (intended to treat Brown's leukaemia) using a donor with a CCR5 Delta32 mutation that confers resistance to HIV acquisition (Hutter et al., 2009). Though researchers initially cautioned that this was not a ‘cure’ for HIV, the case was reported as such in the press and the term ‘functional cure’ was later used in the scientific literature when referring to this case (Johnston & Barré-Sinoussi, 2012; Levy, 2009; McNeil, 2008). The exact mechanism of the ‘cure’ is still speculative and it has been postulated that highly unique circumstances – for example the development of graft-versus-host disease – might have contributed to purging the patient's HIV reservoir, and have seen efforts to duplicate this success frustrated (Henrich et al., 2013).

2 We support the use of the term ‘remission’ (rather than ‘cure’) because ‘cure’ implies the complete elimination of disease with no chance of recurrence. ‘Remission’ more accurately reflects the combination of clinical improvement but sustained uncertainty seen in both the ‘Mississippi baby’ and the ‘Berlin patient’ (Tucker, Volberding, Margolis, Rennie, & Barré-Sinoussi, 2014).

3 In contrast to the IAS recommendations, Shah et al. advocate for the inclusion of vulnerable women and infants at high risk for HIV transmission in cure research (2014).

4 We stress the importance of context in interpreting the results of these studies. An intervention found to be effective in one context may not be effective in all contexts. For example, in contrast to the Malawi results, a recent study of cash transfers in South Africa showed that cash transfers did not reduce HIV risk among young women, though the low rates of HIV risk overall in the study groups may have impacted the results (Miller, 2015; Pettifor et al., 2015).

Additional information

Funding

This research was supported by the U.S. National Institutes of Health [grant number 1R01A108366-01] and the Brocher Foundation.