HIV cure research: seeking an end to HIV through partnerships

Jennifer Power is a Research Fellow at the Australian Research Centre in Sex, Health and Society at Latrobe University. Brent Allan is the CEO of Living Positive Victoria. This article was originally published in HIV Australia, Volume 14, No.2.

In 2008, The Wall Street Journal ran the headline, ‘A Doctor, a Mutation and a Potential Cure for AIDS’. Problematic headline aside, this article was notable for first introducing the world to ‘the Berlin Patient’ – Timothy Ray Brown, a man who had been ‘cured’ of HIV through a bone marrow transplant conducted as part of his treatment for leukaemia.^1,2

Brown is now widely known as the only person to have been cured of HIV, and his case is recognised as a ‘game changer’ in clinical research for a HIV cure.

The procedure received by Brown involved a bone marrow transplant from a donor with an exceedingly rare genetic mutation, conferring a natural resistance to HIV. The transplant was expensive and highly risky – the mortality rate for this procedure is around 20%. As such, this approach is unlikely to ever become an option for wide-scale HIV treatment.³

However, the success of Brown’s treatment did raise the theoretical possibility that HIV could be curable, opening new space for clinical and social debate about potential research directions. An increase in scientific attention and funding for HIV cure research has followed.⁴

Today there are over 100 clinical trials in progress across the world – including in Australia – relating to medical interventions that could contribute to achieving a ‘cure’ for HIV.⁵ However, what such a cure might look like is uncertain and many researchers suggest the term ‘clinical remission’ is likely to be more appropriate than ‘cure’. Either way, much of this research is in the early stages. If a cure does become available it will be many years, if not decades, away.⁶

So what is the role for community in HIV cure research?

Clinical research is often seen as the domain of scientists and medical professionals – something to which non-experts, or the community more broadly, would have little to contribute. But the history of HIV challenges this. People living with HIV and ‘treatment activists’ have long insisted on active involvement of people living with HIV (PLHIV) (and other ‘health consumers’) in rolling out new treatments, in framing biomedical research and in developing strategies to enhance the accessibility of HIV treatment.

In the US, the inaugural demonstration by ACT UP, held on Wall Street in New York City in 1987, was driven by a demand for the ‘immediate release by the Federal Food and Drug Administration of drugs that might help save our lives.’⁷ This demand reflects the core basis of treatment activism – insistence on a greater role for PLHIV and community advocates in decision making about clinical issues relating to HIV, including the ethical oversight and implementation of clinical trials.

In Australia, the input of HIV-positive people has been facilitated by the partnership approach to HIV, which helped build collaborative relationships between people with HIV, the community sector, the medical profession and scientific researchers. This approach was largely unprecedented in terms of the involvement of ‘consumers’ in the processes of clinical trials and medical decision-making more broadly. In 1993, in recognition of the tenth anniversary of the Victorian AIDS Council, the then President, Michael Bartos, wrote:

It may seem old hat now, but we should not forget the struggles fought around the phrase “people living with AIDS”. The resistance to a passive medicalisation of people diagnosed with AIDS was strong from the outset. The combination of media portrayal of “AIDS victims” together with a paternalistic and highly technological medical system were powerful forces against seeing people with AIDS as active agents in control of their lives. The battle fought by people living with AIDS has revolutionised the relationship between the medical system and a group of erstwhile
‘patients’.⁸

So it is into this space that the new wave of HIV cure research has emerged. The scientific world has responded accordingly. Most funding bodies and major HIV research agencies have a dedicated focus on engaging communities in HIV cure research. The International AIDS Society, for example, has a program to enhance community engagement and understanding of community concerns about HIV cure research.⁹

But there are still uncertainties about the best ways for HIV-positive people and community advocates to be involved. It is one thing for medical scientists to pursue engagement and consult with communities; there also needs to be a conversation among people with HIV and within communities about HIV cure research to identify concerns, issues and strategies for being actively engaged alongside clinical researchers.

So what are community perspectives on HIV cure research?

In early 2016, a workshop was held in Victoria providing an opportunity for a range of stakeholders from the HIV sector to discuss social and ethical concerns relating to HIV cure research.

The workshop was a joint collaboration between Living Positive Victoria and the Australian Research Centre in Sex, Health and Society (ARCSHS) at La Trobe University. It was held as part of a broader project that also involves collaborators from the Australian Federation of AIDS Organisations (AFAO), the National Association of People with HIV Australia, the Peter Doherty Institute for Infection and Immunity at the University of Melbourne, the University of North Carolina and Johns Hopkins University in the US.

In introducing this workshop, Brent Allan, Chief Executive Officer of Living Positive Victoria, stated: ‘We need a balance between hope and healthy scepticism’ about HIV cure research’. This emerged as a major theme throughout the workshop.

Workshop participants were keen to discuss ways to generate interest and enthusiasm about HIV cure research, including encouraging participation in clinical trials where appropriate. But there were concerns about managing false hope – particularly given media tendencies to exaggerate claims about an immanent cure.

The false hope shifts to confirmed scepticism when media representations of quality research fail to deliver on the stated claims. The obvious impact is that some people with HIV ‘hold out’ for a cure, perhaps even betting their treatment decisions on the possibility that a cure will become available soon. This potentially has a significant psychological impact – the emotional rollercoaster that comes with hopes raised, then dashed again and again.

Unrealistic expectations for a cure might lead people to volunteer for trials assuming they will receive greater ‘curative benefit’ from the trial than is likely. It is ethically important that trial participants are clear about the risks and benefits of participation. There is a balance to be struck between encouraging hope, optimism and choice, while recognising the vulnerability of some people who are desperately searching for a cure.¹⁰

Addressing the fears, hopes, aspirations and conundrums of people with HIV requires a multi-partnered communication and education strategy involving a wide range of voices, perspectives and interpretations.

Monitoring media is important. AFAO produces a key resource to guide journalists reporting on HIV¹¹, and PLHIV advocacy agencies are well-practised at providing media commentary. However, it is important that journalists are aware of best practice, and that the HIV sector works to maintain strong relationships with media outlets and individual reporters, ensuring that people with HIV are called upon for commentary whenever new stories on new cure research arise. This is also where partnership with the scientific community comes into play: it is important to align media responses to credible sources within the scientific community, to ensure that both community and scientific voices are accurately represented.

How do we ensure the continued accurate and realistic information about HIV cure research is maintained in light of slow but continued gains? We can achieve this through information being made available on websites, through community information sessions, in newspapers and so forth.¹² But it’s the attention and commitment to explaining the complexity of cure science over the long term that must be mustered.

A ‘cure’ for HIV might mean many things. It could mean long term viral suppression without medication. It could mean total elimination of the virus. It could mean something else again. At this point in time, what a ‘cure’ for HIV might look like is not entirely clear.

As we evolve community understanding about an HIV ‘cure’, we need to encourage a critical and sophisticated approach to appreciating the complexity of information about cure research. Use of terms such as ‘remission’ or ‘long term viral suppression’ rather than ‘cure’ may encourage more careful thinking about what a cure might actually mean for people with HIV. It might also help manage expectations and expand understanding of the complexities of HIV cure science.

Perhaps we need to bust apart the term ‘HIV cure’ into it various manifestations so we can re-orient the discussion.

The priority is obvious. We must invest in building literacy about HIV cure among people with HIV and the community more broadly. This will help people understand more about the likely outcomes of cure research and ensure people interested in trial participation have access to reliable information to help guide their decisions.

Information provision is also about equity. Equity concerns were raised a number of times throughout the workshop. It was recognised that, while many HIV-positive people are highly educated and well-connected into PLHIV networks and information sources, many are not. Women and heterosexual men, for example, may be less connected to the HIV sector. Newly diagnosed people with HIV may be vulnerable to misinformation and have less experience dealing with the medical system. PLHIV from culturally and linguistically diverse communities and newly arrived migrants may have less capacity to access or understand health education resources or to connect with other people with HIV or the HIV sector.

Our commitment to the provision of information on cure research needs to be generated with equity concerns in mind and it requires the old adage of knowledge provision plus changing attitudes occurs most effectively over time and must include clinicians and other direct service providers.

As one workshop participant said, ‘It is important for advocates and the sector to advance and promote the interests of people who may not have the capacity to advocate their own needs’.

So where to from here

The workshop closed with a screening of the closing scene from the 1990 film Longtime Companion.¹³ In this scene, underscored by the beautiful Zane Campbell song Post-mortem Bar, three friends (John, Fuzzy and Lisa) walk along a beach reflecting on the loss of their friends and lovers to AIDS.

John says, ‘I want to be there, if they ever do find a cure’.

Fuzzy replies, ‘Imagine what it would be like,’ to which Lisa aptly responds, ‘Like the end of WWII’.

Campbell’s lyrics follow on, ‘And we’ll go down to the post-mortem bar and catch up on the years that have passed between us and we’ll tell our stories’, while we watch Lisa, Fuzzy and John imagine seeing their friends again in a joyful (post-war) celebration.

A cure for HIV is the ultimate (and long-awaited) goal. This is what makes the renewed focus on HIV cure research so meaningful and important.

But the HIV ‘cure’ – and cure research at any stage – is not just about science as history has shown us. Irrespective of whether or not a HIV ‘cure’ ever becomes available, this research will have an impact on people’s lives. The people most affected need to be informed so they can have a say about how this plays out and so that balance between optimism and healthy scepticism can be realistically managed.

Perhaps, like the end of WWII, the collaborative partnership between the allies in the response – people with HIV, the HIV sector and the scientific community will create the momentum needed to ensure we are all fighting the same fight, with the same goals and the same mission in mind.

References

1. There was also a ‘Berlin Patient’ identified in 1998. However, unlike Timothy Ray Brown, follow-up with this patient suggested that the control of his viral replication was related to his own genetic background, rather than medical intervention. See Jessen, H. (2014). How a Single Patient Influenced HIV Research — 15-Year Follow-up. N Engl J Med, 370(1), 682–683 doi. 10.1056/NEJMc1308413
2. Schoofs, M. (2008, 7 November). A Doctor, a Mutation and a Potential Cure for AIDS. The Wall Street Journal. Retrieved from: http://www.wsj.com/articles/SB122602394113507555
3. Sanchez, R., Wills, S., Young, S. (2013, 9 December). HIV returns in two patients after bone marrow transplant. CNN. Retrieved from: http://edition.cnn.com/2013/12/07/
4. Engel, M. (2014, 1 July). Hoping Out Loud, After years of silence, talk of an HIV cure. Hutch News. Retrieved from: http://www. fredhutch.org/en/news/center-news/2014/07/Hoping-out-loud-HIV-cure.html
5. A global list of trials can be found at: http://www.treatmentactiongroup.org/cure/trials. Information about Australian trials can be found at www.hivcure.com.au
6. San Francisco AIDS Foundation. (2014). HIV Cure Research: Separating the Hope from the Hype. BETA Blog. Retrieved from: http://betablog.org/hiv-cure-research-separating-hope-from-hype
7. Smith, R. (2006). Drugs into Bodies! A History of AIDS Treatment Activism. The Body. Retrieved from: http://www.thebody.com/content/art31153.html
8. Victorian AIDS Council (VAC). (1993). A Dangerous Decade: 10 Years of the Victorian AIDS Council, 1983–1993. VAC, Melbourne. Retrieved from: http://vac.org.au/sites/default/files/VAC-GMHC_Dangerous_Decade.pdf
9. See the IAS website at: http://www.iasociety. org/HIV-programmes/Towards-an-HIV-Cure/Activities/Community-Engagement
10. For a discussion on this see: Power, J. (2015). Risks Vs Rewards: Why people volunteer
    for HIV cure research. The Conversation. Retrieved from: https://theconversation. com/risks-vs-rewards-why-people-with-hiv-volunteer-for-cure-research-41182
11. See the AFAO HIV Media Guide, available at: https://www.afao.org.au/media-centre/media-guide
12. See the recently launched website produced by NAPWHA in collaboration with the Peter Doherty Institute for Infection and Immunity at the University of Melbourne, and the Alfred Hospital, available at: www.hivcure.com.au
13. Mitchell, K. (2015). ‘Longtime Companion’ Is 25: An Oral History of the trailblazing, heartbreaking first major movie about AIDS. Yahoo Movies. Retrieved from: https://
    ca.movies.yahoo.com/post/129615889191/longtime-companion-is-25-an-oral-history-of-the