A pandemic is upon us. Right now, every day, we live cautiously, nervously and with the uncertainty and fear that we have no magic cure. Every day, it is our reality as we adapt to, and indeed struggle with, daily life during a pandemic.
40 years ago, another major battle against a disease that knew no fear was upon us: the battle against HIV. Both people living with COVID-19 and HIV share a key psychological outcome: the social stigma where people can feel isolated, alone and unsupported once diagnosed. In the 1980s, for someone diagnosed with HIV, the social stigma was suffocating. As such, many kept quiet and suffered in silence.
It is important that we learn from past experiences to build a world that better understands HIV and the reality of living with it. Recently, as I watched people like Lloyd Russell Moyle, an MP from the UK, and the great Welsh rugby player Gareth Thomas speak about their experiences of living with HIV, I marvelled at how far we have come in terms of both understanding the disease and the ability to treat it and for persons living with HIV to live full, active and productive lives.
Living with HIV is not only possible, it is probable. Crucially, this is now medically possible thanks to pioneering advances in anti-retroviral drugs that make the disease undetectable with stable treatment adherence. This ensures that HIV cannot be passed on. Yet, this is an epidemic which still requires the world to make further progress.
“Health care is a human right. It should be a public good. We must learn from HIV and COVID-19 and implement rights-based, equitable, people-centred universal health coverage” Winnie Byanyima, Executive Director of UNAIDS
No advances in medicine can free people from the reality of living with a long-term illness or disease. There are social realities: can I return fully to work? Who will take care of me if I become ill? Will my friends and family understand my illness or will a lack of understanding result in a rift? These are all very real concerns for people living with long-term illnesses, including HIV. In addition, there are also medical concerns, including side effects and onset comorbidities. To ensure that people with HIV can lead full, happy and fulfilling lives, each of these concerns and realities needs to be taken into account and addressed on an ongoing basis.
Today there are many programmes which help people living with HIV. UNAIDS is at the forefront of the global AIDS response and is currently in the process of developing its new global strategy. According to Winnie Byanyima, Executive Director of UNAIDS, “COVID-19 is a unique opportunity to reimagine health systems. All eyes are on health, health systems and health care. Countries want and need to be better equipped to deal not only with COVID-19 but also to create healthier, more resilient societies for any future shocks. Health care is a human right. It should be a public good. We must learn from HIV and COVID-19 and implement rights-based, equitable, people-centred universal health coverage.”
Against the background of a pandemic, it is important to sustain services for people living with HIV and to ensure that resources are not unduly diverted from the HIV response.
I hosted an online event looking at these quality of life factors on the 28th of October, in cooperation with ViiV Healthcare, to launch their new report, the “Positive Perspectives Manifesto”. The manifesto examines and makes five recommendations based on the perspectives of people living HIV: quality of life and health outcomes; communication, information and shared decision-making; stigma, discrimination and psychosocial issues; ageing with HIV and treatment over a lifetime; and treatments, engaging support services and ageing. Given that the manifesto has been developed by communities of people living with HIV themselves, I am certain that it will be an enriching and enlightening event, that gives those present a unique perspective into living with HIV.
As policymakers, we have a duty and a responsibility to do our utmost to ensure that our citizens can live the most fulfilling and positive lives possible. It is my hope that in the same way that doctors, nurses, social workers, families and indeed patients do, we can, on an ongoing basis, consider whether we are addressing the concerns of those living with HIV, and indeed their realities.
“I call for EU wide action to improve the quality of life for all people living with HIV and to keep HIV at the forefront of decision-making” Frances Fitzgerald (IE, EPP)
Quality of life is a regular consideration for those living with a long-term illness or disease, and indeed for those who have recently recovered from an illness too. The perpetual round of questions as to how a new reality may match up to a previous life is something that has the capacity to torment many people with long-term illnesses, including those living with HIV. It is my fervent hope that through epidemics, pandemics, and whatever else may come, that we can do our utmost to ensure that we can come out the other side, and that those coming through recovery or a new reality can find that a happy and prosperous future awaits them.
I call for EU wide action to improve the quality of life for all people living with HIV and to keep HIV at the forefront of decision-making.