There has been much discussion of late in the international HIV community of comparison between the current Covid 19 pandemic and the ongoing global HIV/AIDS pandemic. In terms of the statistics, as of today, 29 April there are 2.8M cases of Covid 19 worldwide, and more than 200K deaths worldwide. Since the start of the HIV/AIDS epidemic in 1981 an estimated 74.9 million people globally have become infected with HIV and 32 million people have died of AIDS-related illnesses.
Of course Covid 19 is at the forefront of everybody’s minds with concerns about our own safety and that of those near to us, concerns about our own economic future and employment and concerns about society as whole. But HIV/AIDS, with a substantially larger statistical impact (albeit over a much longer period of time) nowadays in the western world at least, remains largely ignored.
But there are many useful lessons to be learned from the experiences of those who have first hand experience of what it is like to have lived through a pandemic – the long term AIDS survivors. Nowadays a person who is diagnosed early with the HIV infection, placed immediately on effective treatment and adheres to that treatment can be expected to live a full and healthy life. HIV no longer kills. But the stigma surrounding the condition does kill.
Stigma is caused by fear. Fear is natural normal human reaction triggered by threatening conditions. Fear is created by lack of correct information. The government’s nation-wide 1987 ‘Don’t Die of Ignorance’ campaign was one of fear designed to drive home a hard-hitting message as widely and as quickly as possible. There has been no national campaign of education since then to combat the stigma that campaign of fear induced.
Stigma has exacerbated the suffering from every major infectious disease epidemic in our history. It is no coincidence that the term ‘a social leper’ is derived from the way that people living with leprosy over the course of many thousands of years have been shunned by society and socially isolated. In much the same way that people living with HIV or AIDS have been, to varying degrees over the past 40 years. And in much the same way that those living with Covid19 are being treated.
Stigma is an evolutionary response. We are hard-wired to physically distance ourselves from others who could infect us. We have evolved reactions to prevent us from maintaining contact with others who we think may be carrying a communicable disease. These reactions are what make us feel disgusted by signs of sickness, such as vomiting or skin lesions, whether or not these signs represent an actual threat to our own health.
And there is a moral as well as physical component, to our response. In the national study I commissioned in 2018 to mark the 20th anniversary of World AIDS Day, 40% of respondents said that they felt that people contracted HIV through ‘irresponsible behaviour’.
We like to believe that bad things happen to bad people. People who are infected with a disease may have done something wrong to deserve it. Maybe people who have become infected with Covid-19 didn’t wash their hands long enough, touched their face too much, or didn’t socially distance enough. This belief is comforting, helping us believe that we are in control of our own fate. It tells us that if we do everything right, we won’t become infected. And we identify certain segments of the population, of which we are not part, as the prime carriers of the disease.
Gay men (at least initially) for HIV/AIDS and the elderly for Covid19. The most marginalised, or the weakest and the most vulnerable members of our society. And also the most disposable.
Stigma harms the mental and physical health of people with disease. This stigma can take the forms of social rejection, gossip, physical violence, and denial of services. In the same HIV/AIDS survey a shocking 21% of all respondents said that they would no longer be friends with someone who has HIV/AIDS, or that they would distance themselves from them, if they found out that they were living with the condition. For the 25-34 year old respondents this figure rose to 55%.
Experiencing stigma from others can lead to elevated depressive symptoms, stress, and substance use. The suicide rate amongst people living with HIV is one third higher than the rest of the population. 5 out of the 13 people who contributed their story of their HIV diagnosis to my book, Ripples from the Edge of Life, talk openly about their attempts to end their own life.
Alarmingly, people don’t have to experience stigma from others to be negatively affected by it. Just anticipating stigma from other people — perhaps because you’ve already seen sick people be ostracized or judged for their illness — can lead to anxiety and stress. Infected people may also internalize stigma, believing that they did something wrong or are a bad person because they became infected with a disease. Or because they have been told this is the case.
Stigma does not only impact people who are sick, but extends to people who have an actual or perceived association with a disease. The Ripple effect. In the context of Covid-19, stigma has additionally been directed at people who appear to be of Chinese origin, the footfall in many Chinese restaurants dropped considerably, before lockdown shut them down completely.
Stigma undermines efforts at testing and treating disease. People who worry that they will be socially shunned if they are sick are less likely to get tested for a disease or seek treatment if they experience symptoms. In those parts of the world where homosexuality is illegal the rates of HIV infection are still soaring as those with symptoms fear that being tested positive could mean severe penalties (in some cases including the death sentence) because being HIV+ automatically equates with being gay.
Education is one of the most popular tools to deconstruct stigma. It can dispel harmful stereotypes, such as that Asians are more likely to have Covid-19. Local and national leaders who fall ill to Covid-19 should be open about their diagnosis to help normalize the disease. On the day that Gareth Thomas announced he was HIV positive in 2019, more than 16,300 visited the NHS webpage on HIV and AIDs, compared with an average 1,300 in the week before. The photographs of Princess Diana holding the hand of young gay men dying from AIDS when she visited an AIDS hospice in 1987 had a huge impact on the way the disease was perceived.
Corporate leaders can clarify that organizational values of inclusion, acceptance, and diversity extend to people who are affected by Covid-19. In some instances, enforcing anti-discrimination policies may be necessary. A patient who is fully recovered from Covid-19 is no longer infectious and should not be treated any differently from his or her colleagues.
I am an Ambassador for Positive Allies ( https://www.sunderland.ac.uk/more/services-for-business/positive-allies/) a free charter mark created by the University of Sunderland. This charter mark, the first of its kind in the world, has been designed to show that an organisation is friendly toward, and inclusive of people living with HIV and will actively challenge HIV stigma. I actively support this organisation as I have been on the receiving end of corporate stigma through being open and honest about living with HIV.
We are told to socially distance. But not to socially isolate. One of our best reduction and resilience tools is simple social support. Employees can schedule virtual coffee hours, lunches, and happy hours with their co-workers to check in on them. We can call and send texts to our neighbours, especially those who have been sick, to update them on our lives and express hope of re-connection after social-distancing measures are lifted. We should also talk openly about the mental health struggles we are all facing — opportunities to talk with others about stressors including stigma can promote positive coping and mental well-being. One of the biggest lessons learned from the HIV/AIDS pandemic is the strength of community support and community activism and we have seen so many examples over the past couple of months of where this has been demonstrated.
Stigma divides and turns us against each other, but pandemics remind us of how connected we all are. Our shared vulnerability to this virus is a source of solidarity. We must remember that the virus — not people with Covid-19 or affected by Covid-19 or those living with HIV or those affected by HIV — is the enemy. Forough Forrokhzad said in his 1962 documentary on an Iranian leper colony, ‘House in Black’, “there is no shortage of ugly in the world, but by closing our eyes on ugliness we will intensify it.” Embrace the ugly. We will all come out of this so much better for it.