Extracting value from the lessons of COVID-19 to empower people living with HIV

The World Health Organization’s announcement on 11 March 2020 classifying COVID-19 as a pandemic had a horribly familiar ring, as it brought back memories of the HIV and AIDS pandemic in the 80s. The tension, the fear and the anxieties about discrimination brought many of us back to a time we thought we had left long ago.

Remarkable progress has been made in the 40 years since the first AIDS cases were reported.Thanks to advances in treatment and care, people living with HIV are now living longer, happier and healthier lives than before. For many of us, though, the COVID-19 pandemic shattered that sense of ease almost overnight, feeding into long-standing anxieties about being immunocompromised.

Global lockdowns and shielding orders issued to people living with HIV across the country have had a profound effect on both physical and mental health. To ensure that this new pandemic does not jeopardise the incredible advances we have made for those living with HIV, we must take immediate steps to safeguard emotional and physical well-being through a holistic approach in the wake of COVID-19, prioritising ways to reduce feelings of loneliness and increase connections with others.

For some people living with HIV, the pandemic exacerbated existing mental health concerns. In 2017, the Public Health England Positive Voices Survey identified loneliness and isolation as the greatest unmet need for people with HIV, with 75% of participants who were dealing with loneliness and isolation not receiving the help they needed, which was deeply concerning even before the COVID-19 pandemic.

More recently, a Positively UK survey commissioned by the All- Party Parliamentary Group Inquiry on HIV and COVID-19, revealed 56% of survey respondents reported experiencing mental health issues during lockdown. Respondents who identified mental health difficulties reported increased anxiety due to the lack of relevant support, with only 15% of the survey respondents reporting having access to clinical psychological services during this time.

People living with HIV are more likely to come from marginalised populations or may experience health inequalities that relates to their age, sexuality, ethnicity, migration status, gender identity, drug use or sex work, along with social determinants such as poverty, housing and education. These are all factors that can contribute to feelings of low self-esteem or isolation and can make reaching out for support more difficult. Furthermore, stigma and discrimination in relation to an HIV diagnosis further compounds these challenges.

As such, finding virtual ways to create new referral pathways during lockdown to increase connectivity with support services and reduce loneliness has been of critical importance. Throughout the pandemic, Positively UK has been working with NAZ Project, Plus Health and the Chelsea and Westminster NHS Foundation Trust to launch a project that uses the Chelsea and Westminster HIV care pathway to offer peer delivered support, targeted to the individual needs of those lost to follow-up or at risk of disengaging from care, including women, young adults, black and ethnic minority groups, and trans people.

The project aims to enhance understanding of HIV and how to live well with it, improve adherence to treatment, and reduce loneliness, by providing one-to-one and group connections with others who live well with HIV. Within the first three months of the programme, we saw a four-fold uptake in referrals from Chelsea and Westminster and were able to provide much needed peer support for people living with HIV during a period of social and physical isolation.

We might think living in shared accommodation or having flat- mates in the time of COVID-19 lockdowns would reduce feelings of loneliness, when in fact this can pose its own challenges for people living with HIV. The Positive Perspectives Study, funded by ViiV Healthcare, is one of the largest, global, HIV patient-reported outcomes studies to date, involving 2,389 people living with HIV across 25 countries.

The research revealed that even before the COVID-19 pandemic when the study was conducted, 58% (1,383/2,389) of the people who participated in the study reported hiding their HIV medicines to avoid sharing their HIV status. Of those participants who ever hid their medication, 63% (867/1,383) indicated that they would feel anxious or stressed if someone were to see their medication.

These stressors can and do lead to people missing treatment doses. For people living with HIV in shared accommodation during lockdown, the fear of discovery or rejection by flatmates or friends unaware of their status can be both terrifying and dangerous and could contribute to poor adherence and negative health outcomes. Identifying loneliness and increasing connection is therefore an essential component to adherence in this time of social and physical isolation that can to many, be extremely challenging.

As we adjust to a world forever changed by the impact of COVID-19, we must ensure that essentials like active dialogue, regular touchpoints with clinicians and keeping the HIV community connected are prioritised to safeguard the physical and emotional well-being of people living with HIV.

In a world where many of these interactions are now being conducted remotely, the danger of a breakdown in communication has increased. The Positive Perspectives Study data highlighted a lack of confidence felt by many respondents when addressing concerns with healthcare providers in person. Combined with a lack of privacy at home to access online support which intensified during the lockdown, telephone and video appointments may present an even greater barrier to some people living with HIV if they persist in place of, rather than as additional options to face-to- face appointments.

Alternatively, where people are happy to book a remote appointment, both healthcare providers and patients will need to work to ensure that the quality of those consultations does not suffer as a result of being virtual.

Looking ahead, as part of the open and active dialogue between healthcare providers and people living with HIV, there is an opportunity for healthcare providers to share the empowering message of Undetectable = Untransmittable (U=U) with all people living with HIV to help improve health outcomes and quality of life (QoL). In recent years, science has proven that people living with HIV who achieve and maintain an undetectable viral load by taking antiretroviral therapy (ART) cannot transmit HIV through sex.

Beyond the science of preventing HIV transmission, the global health initiative known as U=U impacts behavioural, sexual and societal norms. Crucially, it can help reduce the stigma and discrimination that many people living with HIV face. However recent UK surveys of both the general public and healthcare providers (outside of HIV care) showed that a staggering 80% did not know about U=U. Lack of communication or touchpoints throughout the COVID-19 pandemic may mean that this important U=U message has not been shared as widely over the past 18 months.

Despite the incredible advances made over the last 40 years, HIV is still here, and we still have a long way to go before we can eradicate the virus altogether. Rather than letting the impact of COVID-19 take us back a step, we must embrace the lessons of this shared experience and use this moment as an opportunity. In these unprecedented times, the HIV community needs our help. Now more than ever, we must:

  • Implement a holistic approach at a clinic level involving regular reviews of health-related quality of life to ensure optimisation of care and to improve health outcomes, including treatment satisfaction and adherence
  • Ensure the U=U message is more widely communicated through an open and active dialogue between people living with HIV and healthcare providers
  • Recognise and encourage the innovative models of HIV care that have emerged as a response to COVID-19, including integrated care, adapted peer support and, where appropriate, the use of video virtual appointments
  • Extract value from the lessons of the pandemic so we can empower people living with HIV to take a more active role in their health outside of clinical settings and ensure no one is left behind, isolated or lonely.

The pandemic has given us a reason and an opportunity to champion a more holistic approach to dealing with the physical and social challenges of living with HIV. We must seize our chance.

Garry Brough is a member of the Positive Perspectives Advisory Committee and founder of the Bloomsbury Patients Network