Gilead Sciences’ global patient engagement lead and former HIV nurse specialist Geraldine Reilly explores today’s fight against the virus – as TV series It’s A Sin brings back memories of working on the frontline during the AIDS epidemic of the 1980s and 1990s
Until recently, the heartache of the AIDS epidemic – and the social turbulence around it – had been largely forgotten, at least in popular culture. But now, the groundbreaking TV series It’s A Sin has brought it all back for many of us that lived through the crisis.
As an industry, pharma has been at the forefront of the scientific progress that has revolutionised the outlook for the 100,000 people living with HIV (PLWHIV) in the UK today – and you might be forgiven for thinking that the fight against HIV and AIDS is far behind us. With today’s medical advances, PLWHIV in the UK can expect a similar life expectancy to their HIV-negative peers, making the AIDS epidemic of the ‘80s and ‘90s feel like a distant memory. But while there is much to celebrate, there is still much progress to be made.
Lessons learned at the height of the AIDS epidemic
Before joining Gilead, I witnessed the tragedy of the AIDS epidemic first-hand. In the late ‘80s and during the ‘90s, personally and as an HIV nurse specialist at Chelsea and Westminster Hospital, I provided care for many people with AIDS. It was a bleak time, but there was a real sense of community among the healthcare team. We had a shared sense of value for these patients, and wanted to help make the very most of the last days of their lives. Our volunteers in particular were a vital source of support during this time. They gave so much of themselves, tirelessly baking and cooking to provide food for patients, as well as their visiting friends and loved ones and providing a real sense of support and community.
We got to know our patients really well, because we had to understand their situations – it was the definition of truly ‘person-centred’ care. On a ward round, we would assess what was going on for a person beyond his or her medical details. For patients who were approaching their final days and knew they wanted to be at home, we’d look at what their accommodation was like, who was at home to support them, who they had disclosed their status to, and what medical support they had locally – which was mostly none.
There was a lot of sadness and a lot of shame. Many patients who were gay or bisexual had never told their families, let alone that they were HIV positive. Even in the last days of a patient’s life, some families didn’t show up, sometimes because they simply didn’t know what was happening, or in some cases because they were ashamed or afraid. Fear was everywhere.
Back then, we knew that understanding and providing support networks was vital to ensuring the best care possible. Despite medical advances in HIV, this fundamental pillar of healthcare hasn’t changed.
Supporting all people living with HIV
In the early ‘90s, many of the patients I cared for who were seeing out their last days with AIDS were ‘forgotten’ to society; at this time, HIV/AIDS was considered to be a condition confined to the gay community, largely due to the media reporting, but of course this was not the case. Today, we celebrate gay culture with Pride, and the stigma once associated with HIV can feel dissipated to some extent – but we still have a long way to go. There are still so many PLWHIV who may be overlooked or not thought of in the context of HIV – for example, the 45,000 people from Black and Minority Ethnic communities who live with HIV in the UK today, the majority of whom are women, as well as other marginalised groups.
Just a couple of years ago, Gilead sponsored a garden at the RHS Chelsea Flower Show dedicated to combating the stigma surrounding HIV. A woman approached the designer of the garden and asked why it had been created and what was it about. She kept asking about the plants and the different elements of it. Then she went on her way, only to return a short while later to say “I just want you to know that I am HIV positive. I’ve never told anybody.”
Behind closed doors, there are still far too many PLWHIV living in secrecy or shame, and through the community engagement work we have done over the years we know this has a huge impact on access to health services and quality of life as a result.
During the COVID-19 pandemic, this impact has been exacerbated for PLWHIV (particularly marginalised groups) as the health challenges associated with the condition have become harder to address. Social isolation, poor mental health and managing multiple conditions are more significant factors in a patient’s overall health and well-being than ever before.
Like all health services, a great deal has moved online during this time. For many people, this represents huge progress in itself, but what about those living with limited access to the internet, or those that are not digitally literate? We know these are significant issues for many of the communities in which HIV is prevalent. Navigating these new systems can be challenging for people already accessing health services, and for those that do not regularly access services the problem is even greater.
As an industry, we need to do what we can to bridge these gaps. Like many companies, Gilead has funded COVID-19 relief programmes, and as we learn more about the ever-changing picture of HIV during this time, we need to think long term, and work together to ensure all PLWHIV can access the health services they need.
Navigating new and evolving challenges
It’s important that the medical solutions we provide are seen within the context of the complex health problems we need to address. We can do more for patients by thinking outside of traditional medical parameters and thinking about a patient’s overall health – not just monitoring their CD4 count and viral loads (the measure of a patient’s immune response to the virus).
There is a whole generation of PLWHIV that are ageing with the condition. The health issues they face include a range of comorbidities, in addition to the typical health challenges of later life. We need to understand what is going on for patients as a whole, thinking about their lives overall and the various influences on their health.
Patient Activation Measures tell us that health outcomes improve when patients are actively involved in their treatment and care. This is one important strategy to achieving progress in the fight against HIV, particularly when it comes to finding a good health-related quality of life. But it is not what we do, it is how we do it. Increasing patient engagement takes a range of approaches, with the individual experiences and motivations of PLWHIV at the heart of every initiative. We must co-create solutions with patients, not do things ‘to’ or ‘for’ patients.
Building on the progress we have made
When it comes to society’s relationship with HIV, It’s A Sin has brought a lot of issues back to the surface again, shining a spotlight on the complex lives of people who have been affected by HIV and helping a broader audience to understand the devastating impact that the virus had on so many lives. It is also important that we take stock of where we are today and celebrate the incredible progress that has been made. The ‘Undetectable = Untransmittable’ consensus statement (or ‘U=U’ for short) highlights that people with HIV on effective treatment can’t pass on the virus – this is an incredible milestone in scientific progress against the virus and social progress in the ongoing fight against stigma.
As an industry we are continually seeking to understand both the scientific complexities of HIV, and the lives of the people it affects. It is only by taking this ‘person-centred’ approach, just as we did in the ‘80s and ‘90s, that we will maintain progress in the fight against HIV and bring an end to the epidemic for good.