Lessons from the ‘forgotten epidemic’

Jose Catalan and Damien Ridge look to HIV for pathways out of the Covid-19 pandemic.

News of the development and availability of effective vaccines against Covid-19 offers hope at a time when we are demoralised by the health, social, and economic impact of the pandemic. Encouraging as this news is, we know that vaccines alone will not end the pandemic. Here, it’s vital we stop and think about where we have got to and what remains to be done. In this context, we can learn from another viral epidemic that was first recognised 40 years ago, and that we are still facing: HIV. 

HIV can be considered the forgotten epidemic – the word pandemic was not used to refer to HIV – but the experience of dealing with it has some parallels and lessons for the current Covid-19 pandemic, even if the infectivity and worldwide economic and social impact of Covid has greatly exceeded that of HIV already. 

At the time of publishing, the number of people infected with coronavirus worldwide exceeded 86 million, of whom 1.86 million had died. Reports from UNAIDS 2019 show that since 1981, there have been 75 million people diagnosed with HIV, and 32 million have died from HIV-related disease. Both viral infections continue to spread throughout the world. 

Both HIV and Covid-19 seemed to appear out of the blue, although subsequently they were linked to viral infections arising out of wild animal species that had come into close contact with humans (Hook, 2020). Interestingly, early official public responses to these viral infections were both characterised by misinformation and denial, where the sluggish political class would eventually need to have considerable pressure applied by activists before they would adequately address HIV: President Reagan in the US remained silent about HIV for four years, until Rock Hudson died in 1985 (Shilts, 1987). President Trump claimed in the early days that the ‘Chinese virus’ would just ‘go away’, only for the US to continue to suffer the highest number of cases and deaths of any country.

Prevention and treatment: technical effectiveness is not the same as real life impact

Watching the administration of the newly UK approved vaccine in the UK in December 2020 was reminiscent of June 1996, when the hopeful outcome of new trials of combination therapy for HIV were presented at the Vancouver International AIDS conference. Here, impressive results for HIV treatment were presented for the first time. While the virus could not be removed from the person with HIV, its replication could be adequately suppressed if medication continued to be taken. The introduction of these treatments gradually made an impact on the survival of people living with HIV (PLWH), and today those on treatment can achieve an undetectable viral load, and may live for as long as comparable individuals without HIV. The remarkable recovery shown by individuals who seemed to be approaching the end of their lives was described at the time as ‘the Lazarus’ effect’, although we found for many it was ‘Lazarus slowly’, and heartbreakingly the good news did not help all PLWH (for detailed discussion see Catalan, Hedge & Ridge, 2021).

Furthermore, people with HIV with an undetectable viral load are not infectious to others, even when precautions, such as condoms for penetrative sex are not taken. It is to be hoped that the Covid vaccine achieves similar results, both in terms of the health of the people receiving it and their likelihood of infecting others, although the latter is still to be demonstrated. At the moment it is not known how long the vaccine will be effective, whether it will work for all mutations, and whether further vaccination would be required on a regular basis, as in the case of the flu. Unfortunately, extensive efforts over the years to develop a vaccine against HIV have all failed, but medication taken before (Pre-exposure prophylaxis or PrEP), or soon after (Post-exposure prophylaxis or PEP) a potential risky contact, can prevent the person from becoming infected.

But why is it that in spite of these technological advances both in the prevention and the treatment of HIV, almost 1 million people a year still die from HIV worldwide? Several factors play a part. First, actions likely to transmit HIV, such as unprotected sexual contact, injecting drug use, or use of contaminated blood products, still expose uninfected people to the virus.  Second, failure to identify all people at risk for HIV testing (and subsequent effective treatment to all who could benefit), means HIV will continue spread to others. Public education, provision of effective public health interventions to identify and treat people with HIV, as well as effective health care systems, are all essential to bringing HIV infection under control. Despite having the technical means to end the HIV epidemic, the one million people a year dying worldwide is a clear indication of the distance between effective prevention and treatment, and real-world lives.

Vaccines may prove to be effective in preventing coronavirus infection, and treatment of those who become unwell has also improved, but reducing exposure to coronavirus by actions like overcoming vaccine hesitancy, adhering to social distancing, handwashing, and use of facial coverings, are also important. Testing, contact tracing and isolation (including adequate financial and social support to allow people to comply), even in the context of effective vaccines, will continue to play a role in the case of coronavirus. Global access to effective vaccines will be a major undertaking in the short and medium-term, and may become a long-term issue if the immunity provided by the vaccine is time limited. 

The lesson from the HIV epidemic is that although effective prevention and treatment of coronavirus infection is ever closer, we are still facing a pandemic that is social in nature. Eradicating coronavirus, like eradicating HIV, requires more than pharmaceuticals. The actions of individuals, communities  and politicians matter greatly, and effective public health measures need to be prioritised over the short-term politically expedient.

Stigma and discrimination as a contributor to pandemics

Stigma and discrimination against people with HIV (or thought to be at HIV risk), has been shown to lead to low uptake of risk reducing strategies, HIV testing, and treatment access (Turan, Budhwani, Fazeli et al., 2017). Stigma can be internalised, due to feelings of shame or of exclusion, but may also be structural, related to political and social factors that lead to the criminalisation of social groups, like LGBT people, refugees, sex workers, or drug users (Algarin et al., 2019). Tackling HIV stigma and reaching a target of zero discrimination by 2030, is now one of the goals of a global collaboration of the United Nations Programme on HIV/AIDS, and the International Association of Providers of AIDS Care.

In the case of coronavirus, we saw early examples of stigma against Chinese individuals – some politicians still talk about the ‘Chinese virus’ – and in several countries, healthcare workers became the target of attacks. We have also heard fringe voices in favour of the development of ‘herd immunity’, even if there has never been any evidence the strategy could work, and older and frailer individuals would suffer greatly from isolation as a result (see Great Barrington Declaration, 2020). People from ethnic minorities and those living in socially and economically deprived communities, already subject to discrimination and suffering structural inequalities (Bowleg, 2020), face further stigma if they acquire coronavirus. Examples of negative attitudes towards people taking precautions, like using face masks, have been reported in many countries, and may well reduce the use of social measures. A significant minority of individuals hold strong views against Covid-19 vaccination, and this may well lead to problems achieving herd immunity, not to mention social tensions and discrimination of people on both sides of the argument: people wanting to be vaccinated may be shunned by those who oppose it, while those who deny the value of vaccines and refuse to have them may be at risk of being excluded from some occupations involving close contact with others. 

Death and death literacy

In our death-denying society, the seemingly unstoppable deaths of young men in the early years of the HIV epidemic were a major shock, with lasting individual and social consequences. But this period was also a time of creative responses to death, focused on the celebration of lives lost, efforts to evaluate the meaning of life, and contributions to more holistic person-centred models of care (Catalan et al., 2020).  HIV necessitated developing fresher new ways of talking about death. 

The coronavirus pandemic, with its rapid progression and the mounting numbers of deaths of individuals hospitalised in conditions of extreme isolation, the trauma experienced by staff and patients, away from the immediate comfort of relatives, has created conditions that make it especially hard to process and find some resolution and meaning to these deaths. A new form of death literacy will need to be fashioned, one that also deals with the way we have become de-sensitised to the daily reports of high numbers of deaths as a routine set of figures, rather than as the loss of cherished men and women, with their own families, jobs, and lives to live. We are only beginning to hear about the traumas experienced by bereaved families, but actions to provide a better approach to people dying with Covid and their relatives are in progress (Akgun, Shamas, Feder & Shulman-Green, 2020).

The continuing needs of people infected and affected by HIV and Covid-19

Both in the case of HIV (Catalan, Harding, Sibley et al., 2011) and Covid-19 (Taquet et al., 2020), there is good evidence that people with a history of mental health problems are at greater risk of acquiring these infections, and that following a diagnosis there is an increase in psychiatric problems. There are also concerns about the potential for suicide risk in the population as a result of the pandemic (Gunnell et al., 2020), as was the case for HIV. 

In the case of HIV, the psychological and social difficulties of people living with HIV led from the outset to the involvement of HIV activists and charities in providing support, later working with hospital and community teams to ensure specialist mental health care alongside medical care. This collaboration resulted in innovative models of person-centred care. In the case of Covid-19, we are starting to see the beginnings of development of psychological and social support by both health care teams, and volunteers and activists. New guidelines on managing the long-term effects of Covid-19, what is now known as ‘long-Covid’, have been published by NICE, SIGN, and the Royal College of General Practitioners (NICE, 2020), and a network of specialist clinics is being set up (NHS England, 2020).  

A significant consequence of the effectiveness of HIV treatments has been the survival and the ageing of people living with HIV. Welcome as this has been, it has also highlighted the psychological, social, and medical needs of this cohort of people who have survived through very harrowing times. It is likely that survivors of Covid-19, especially those who have experienced severe illness or prolonged symptoms, both physical and psychological, will need further support and care, as happened in the case of HIV. Families bereaved by the loss of close relatives and deprived of access to them, and of the opportunity of saying good bye, will also be likely to experience prolonged difficulties.

The impact of caring for people living and dying with HIV is well documented, with significant levels of work-related stress and burnout being recognised in HIV care workers (Horsman & Sheeran, 1995; Catalan, Burgess, Pergami et al., 1996; Valjee & van Dyk, 2014). A similar impact of burnout and trauma is becoming apparent in those caring for people at risk of coronavirus infection, including the elderly in care homes, or in the hospitals where severe complications from coronavirus are treated. An added concern in the case of coronavirus is the high risk of infection of health and care workers, due to the high infectivity of the virus. The need to develop forms of support and care for healthcare workers is already apparent in the case of Covid-19.

Concluding comments

While the infectivity and social and economic impact of the coronavirus infection is much greater than that of HIV, there are important lessons from the experience of dealing with the latter. The importance of science as a guide to practice is clear in both cases, as is the need to recognise the limits of medicines and vaccines, and the continuous need to rely on good individual and community actions, as well as public health measures. Fighting stigma and discrimination, and ensuring adequate access to prevention and care for all on a global scale, are shared objectives for both viral infections. 

The language and the emotions associated with death played an important part in dealing with HIV and its consequences, and Covid-19 is raising complex issues concerning loss and grief which will need to find their own expression and adaptations. This will not be easy in view of the nature and extent of the losses.

Finally, even if future access to vaccines and behavioural changes lead to a reduction of the incidence or even eradication of coronavirus infection, the emotional and practical needs of the survivors of coronavirus and their relatives will require creative responses involving statutory services as well as volunteers.

- Jose Catalan, Barbara Hedge and Damien Ridge are the authors of HIV in the UK: Voices from the Epidemic (2021), Routledge, Abingdon, Oxon.

References

Algarin A, Zhou Z, Cook C, Cook R, Ibanez G (2019) Age, sex, race, ethnicity, sexual orientation: intersectionality of marginalized-group identities and enacted HIV-related stigma among people living with HIV in Florida. AIDS and Behavior23:2992-3001.

Akgun KM, Shamas TL, Feder SL & Shulman-Green D (2020) Communication strategies to mitigate fear and suffering among COVID-19 patients isolated in ICU and their families. Heart and Lung, 000, 1-2. https://doi.org/10.1016/jhrtlng.2020.04.016

Bowleg L (2020) We’re not all in this together: on COVID-19, intersectionality, and structural inequality, American Journal of Public Health, 28 May, https://doi: 10.2105/AJPH.2020.305766.

Catalan J, Burgess A, Pergami A, Hulme N, Gazzard B & Phillips R (1996) The psychological impact on staff of caring for people with serious diseases: the case of HIV infection and oncology. Journal of Psychosomatic Research40(4):425-435.

Catalan J, Harding R, Sibley E, Clucas C, Croome N & Sherr L (2011) HIV infection and mental health: suicidal behaviour – systematic review. Psychology, Health & Medicine, 16(5): 588-611.

Catalan J, Ridge D, Cheshire A, Hedge B, Rosenfeld D. The Changing Narratives of Death, Dying, and HIV in the United Kingdom. Qualitative Health Research. 2020;30(10):1561-1571.

Catalan J, Hedge B, and Ridge D (2021) HIV in the UK: Voices from the Epidemic. Routledge, Abingdon, Oxon.

Gunnell D, Appleby L, Arensman E, Hawton K, John A, Kapur N, Khan M, O’Connor R & J Pirkis (2020) Suicide risk and prevention during the COVID-19 pandemic. Lancet Psychiatry, April 21 https://doi.org./10.1016/S2215-0366(20)30171-1

Horsman J & Sheeran P (1995) Health care workers and HIV/AIDS: a critical review of the literature. Social Science and Medicine, 4(11): 1535-1567.

Hook L (2020) The next pandemic: where will it come from and can we stop it. FT Weekend Magazine, November 1.

NHS England (2020) Long COVID patients to get help at more than 60 clinics. December 18. 

NICE guideline (2020) COVID-19 rapid guideline: managing the long-term effects of COVID-19. December 18. 

Shilts, R (1987) And the band played on: Politics, people, and the AIDS epidemic. St Martin’s Press, New York.

Taquet M, Luciano S, Geddes JR Harrison P (2020) Bidirectional associations between COVID-19 and psychiatric disorder: retrospective cohort studies of 62354 COVID-19 cases in the USA. Lancet Psychiatry, November 9 https://doi.org/10.1016/S2215-0366(20)30462-4

Turan B, Budhwani H, Fazeli PH, Browning WR, Raper JL et al (2017) How does stigma affect people living with HIV? The mediating roles of internalised and anticipated stigma in the effects of community on health and psychosocial outcomes. AIDS and Behavior, 21(1): 283-291.

Valjee L & van Dyk AC (2014) Impact of caring for people living with HIV on the psychosocial well-being of palliative caregivers. Curationis, 37(1): 1-13.

BPS Members can discuss this article

Already a member? Or Create an account

Not a member? Find out about becoming a member or subscriber