HIV: Past, present, and future
26th November 2019
by Dr Rachel Sumner
World AIDS Day is marked on the 1st December each year, and has been since 1988. We’ve come a long way since then in improving outcomes for those with HIV, but to date there is still no cure. When it was first discovered, AIDS was referred to as “The Gay Plague”, thought to be confined to communities of men who have sex with men – even being classified by the medical community as Gay-Related Immune Disease (GRID). Knowledge expanded rapidly during the 1980s, but not fast enough to keep up with the spreading of the disease, which was seeing entire communities of gay men being wiped out. Shortly after the discovery of AIDS, Human Immunodeficiency Virus (HIV) was determined to be the predisposing infectious agent causing it, and it was discovered in communities of injection drug users as well. Even though HIV had been determined to be the cause behind AIDS, little was known about its transmission, and there was still a widespread fear that it could be spread through air, water, and even touch.
Since that time, we have learned a great deal more about the virus, how it is transmitted, and how it can be treated. Game-changing drugs have been developed that significantly slow the progression of the disease to the point where HIV is now classifiable as a chronic disease rather than a terminal one. The drugs, however, are not without problem. Each “line” of therapeutics comes with its own side-effects and issues with toxicity, and an individual will likely need to go through several lines of treatment throughout their life to keep the virus under control. Alongside the side effects (that include nausea, vomiting, vertigo, skin irritation, liver failure, kidney failure, rash, fever, high cholesterol, bone loss, bleeding, loss of appetite – the list goes on..), there are sometimes demanding schedules to adhere to, with drugs needing to be taken with regular precision in order to keep the virus at bay.
Whilst the drugs are becoming safer and less toxic, they are still not without problem. However, they do allow (for the most part), HIV patients to live relatively normal lives, and to live with some assurance that they will not pass their infection on provided the drugs are working sufficiently to lower viral load to undetectable. One very encouraging development in the most recent few years is the development of Pre-Exposure Prophylaxis (PrEP), using antiretrovirals as a means of preventing infection in those likely to come into contact with it. What is important to note here, however, is that these benefits are only available to those who have access to the drugs. Access to antiretrovirals in the UK is good, thanks to our socialist model of healthcare (for now… please go out and vote!), however it is a vastly different issue elsewhere in the world. Even in the US, the richest nation in the world according to GDP, access to antiretrovirals is not guaranteed. Even though the US is one of the largest donors to HIV medicine research, the structural inequalities seen in its society not only contribute to the spread of HIV, but also to the lack of treatment of those who need it.
So why is HIV a psychological issue? Across the world infection continues. We know how HIV spreads, we know how to prevent it, in some cases the means of preventing it are free to those who need it; yet it persists. As we get better at treating it, and we are no longer losing vast swathes of individuals to HIV, we see it less on the news, and consider it as less of a threat. Complacency or lack of perceived threat can lead to the lowering of guard, and the increase of risk. Infection rates in some countries are on the rise in certain demographics. It is only through high profile disclosures of HIV status that the dialogue re-opens, as we have recently seen with the brave decision by Welsh Rugby player Gareth Thomas. Thanks to him, we have seen a record number of people making enquiries to charities such as the Terrence Higgins Trust to seek information about HIV. However, the decision to do this was likely not a light one at all. HIV still sees a huge amount of stigma despite the fact we know so much more about it. It carries with it connotations of poor moral choices, of being “dirty”, of weakness of character, alongside any of the other stigmatised associations of being gay if that happens to be disclosed in the process.
Additionally, the illness disproportionately affects those who are poor, and those who are frequently marginalised from society. In the US, the African-American community are excessively affected by HIV, and are frequently those less able to access treatment. This is due to a variety of factors, but stigma, distrust in the medical system (reasonably so since the Tuskegee study), poverty, and discrimination all play important parts. Injection drug users are increasingly at risk from HIV, both due to being disenfranchised from healthcare, and from being prevented reasonable safeguards to protect against transmission such as with needle exchange programmes. They are a community of people who are regularly demonised and treated with contempt rather than compassion.
Not only are there associations with infection and access to treatment, psychological factors play a huge part in the way that someone’s HIV disease trajectory plays out. Anxiety, depression, loneliness, social stigma, HIV status disclosure, HIV status nondisclosure, bereavement, and caregiving are all factors associated with accelerated disease course in people living with HIV. My PhD work looked at how neuropsychological factors relate to T-cell loss in those with HIV, showing that those with more active left hemispheres at rest have a less aggressive trajectory of helper T-cell loss than those whose right hemispheres are more active. At rest, one of your hemispheres will be humming slightly louder than the other, which can have an impact on your immune system; but this lateral activity can also be affected by stress, with a switch being observed to the right side in times of stress and depression. So, psychology has a lot to do with HIV: not just in terms of its transmission, but also in terms of its prognosis.
The biggest part that psychology has to play is through stigma associated with HIV. The stigma related to HIV prevents people from being tested, prevents open discussions about condom use, stops people from seeking treatment, prevents discussion in public health fora around prevention, and prevents open dialogue about what it means to live with HIV. Whilst being dismissed from work for being HIV+ is legally protected by the Equality Act in the UK (and through similar legislation in other countries), that still doesn’t mean that someone living with HIV won’t find their workplace to be anything less than hostile if disclosure occurs, threatening livelihoods and lowering quality of life. Some notable people in our society are doing their best to confront the stigma associated with HIV, such as The Duke of Sussex, who has continued the work of his mother in that particular field, but we are a long way from being stigma free. Stigma associated with any specific condition or status is a hard thing to break, and we still don’t understand how to do this most effectively. One of the best ways to break the stigma of anything is to not resist talking about it. The more we discuss, the more something is seen as normal (or at the very least not taboo). Trying to disentangle HIV from its rather Victorian early attachment to morality has been a huge challenge, but it is clearly an important step in fighting HIV.
1st December is World AIDS Day. Please wear a red ribbon to help break the stigma. Please also consider donating to an HIV associated charity to help continue the research into a cure.
If you would like more information about HIV, HIV testing or treatment, or facts and figures about HIV and AIDS, please visit any of the following sites for accurate, friendly, and helpful advice:
National AIDS Trust: www.nat.org.uk
Terrence Higgins Trust: www.tht.org.uk/