1 April 2022
On the 15th February 2022, a Guardian headline stated, ‘Third person apparently cured of HIV using novel stem cell transplant.’ NBC News reported more cautiously, ‘Scientists have possibly cured HIV in a woman for the first time.’ This is ‘The New York patient’ who was diagnosed with HIV in 2013 and leukaemia in 2017. She has been in remission since 2017 and off HIV treatment for 14 months.
‘The New York patient’ joins two other talismanic figures who have enjoyed remission in recent years after treatment for blood cancers and HIV including ‘The London patient’ in 2019 and ‘The Berlin patient’ in 2009. Other figures of interest include elite and posttreatment controllers such as ‘The Mississippi baby’ and ‘The Esperanza patient’, whose immune systems greatly suppress viral replication. In these people, no functional virus has been found, at least for a while.
We have asked how the figure of ‘The Gardener’, a moniker for a person living with breast cancer, inspired hope and excitement because of her unusual history of illness and response to treatment. Cancers are at the centre of a biologically personalised medicine that aims to differentiate diseases and their aetiologies, especially through genomic analysis.
How do figures like The Gardener or The New York patient configure, provoke and assess personalisation in medicine, care and research?
Some people living with HIV have developed antibodies against many strains of HIV. These are called broadly neutralising antibodies (bNAbs) and they are now being trialled therapeutically. Six months ago, we began to observe a Phase II trial of bNAbs called the RIO Trial – whose name reflects the coordinating role of the Rockefeller, Imperial and Oxford. This trial builds on previous collaborations and includes several participating UK sites. Our role is primarily to interview participants, non-participants, staff and community members.
HIV cure and remission research draws on figures such as The New York patient and elite controllers to try to understand and then generalise from their histories. In the RIO Trial, ‘a randomised placebo-controlled trial off ART (antiretroviral therapy) using dual bNAb therapy’ aims to assess long-term control of HIV in the absence of ongoing treatment and, ultimately, a cure for the infection. It is hoped that the bNAb combination may have a direct antiretroviral effect for a period and/or modulate immune response in the way of other forms of immunotherapy. Those involved (trial participants, non-participants, staff and community members) have drawn on community input to the study and guidelines from organisations such as the Treatment Action Group to monitor varied dimensions of safety. Trial participants thought it was “a big ask” to interrupt their treatment but they also thought their contribution might have “great impact” on the field and even directly benefit them. Our preliminary results show that research and care are combined and highly personalised; participants experience n of 1 care as they contribute to the study.
HIV medicine in the 1980s and 1990s was also personalised. We have attributed this personalisation to the concerted efforts of healthcare staff, patients, advocates and industry to find out what treatments might be effective, and to care for people who were ill. By the 2000s with the introduction of effective antiretroviral treatments, this form of personalisation had virtually disappeared, and HIV treatment has become uniform, standardised, accessible and effective for uncomplicated cases of HIV infection. Personalised HIV medicine has however continued in research such as RIO’s trial of treatment.
The New York patient’s story includes other themes of importance in HIV cure research. One of the doctors involved in the treatment, Dr Koen van Besien, explained that this new technique allows for partial matches with donors for umbilical cord blood grafts, and so it “greatly increases the likelihood of finding suitable donors for such patients” (The Guardian 15th February). Women make up just over 10% of participants in cure trials but more than half of the world’s 35m cases of HIV and, as Steven Deeks, an Aids expert at the University of California, reported to the New York Times, “The fact that she’s mixed race, and that she’s a woman, that is really important scientifically and really important in terms of the community impact.”
Our current work may help us address the when and the who of personalised medicine. In its promissory, speculative, and experimental aspects, medical research may fuel the industrialisation and financialisaton of life, but it also anticipates its own demise. Early phase trials are embedded in translational research paradigms and a personalised approach that tries to discover what might work and what might help understand, mitigate, prevent or cure a condition in some people. To put this another way, participants in the RIO trial hope that cure and remission research will ‘translate’ into standardised, safe and affordable treatments for people living with HIV around the world. Similarly, participants in cancer services hope that cancer care will not simply lead to more personalisation but also to effective treatments for those with similar breast cancers.
National Institute for Health Research 2018 campaign
NHS England implies that an antiquated and even dangerous one-size-fits-all medicine is the antonym of contemporary practice. This contrast obscures the figuring of personalisation as a (potential) precursor to better treatment or what Clayton Christensen (2008) understood as a contemporary one-size-fits-all Precision Medicine. As Spencer Nam notes,
“We see over and over that diseases of which we have precise understanding do not have personalized treatment methods. Instead, we cure these diseases by simple and standardized solutions that are low cost. Bacterial infections [such as H.pylori bacterium, the cause of gastric ulcers] are cured by taking antibiotics…”
This contrast also obscures the grounding of translational medicine in a collective –‘national’ – provisioning of care, which requires universal standards of equity and access to appropriate treatment for all. Denominating this ‘all’ involves continuous calibration to the population affected by a specific kind of breast cancer, for example, or the population involved in a clinical trial or invited to a national screening programme for H.pylori bacterium. Figures of personalisation such as The New York patient inspire hope or anticipation of a medicine that is (relatively) effective for everyone.