June 2020 Newsletter

HIV Age Positively is a disease awareness programme that has been developed
and paid for by Gilead Sciences Ltd

At the start of the year, we set our focus on the continual collaboration of the HIV community and the rest of civil society, to bring much needed tangible and sustainable improvements for people ageing with HIV. While the focus of the programme has shifted in light of the COVID-19 pandemic, it now embraces what is commonly referred to as the “new normal” and is directed toward supporting the immediate needs of the community. The HIV Age Positively ethos of thinking and doing things differently is now more pertinent than ever. By coming together, to share insights and take inspiration from outside of HIV, we can navigate the challenges we face through the pandemic while learning how to evolve and shape the future around the needs of people as they age with HIV.

Harnessing the power of collective action

The HIV community are the pioneers of patient activism which started during the AIDS epidemic. This time saw people living with HIV, clinicians, and advocacy groups working tirelessly to bring about change to help the most vulnerable people in society. Although we must be careful not to directly compare AIDS and COVID-19, there are some noticeable similarities, including the fear and misinformation surrounding the virus, the social isolation and loneliness experienced by people during the lockdown period and the disproportionate impact the virus has had on black and minority ethnic groups. One important lesson we can learn from the AIDS pandemic is the power of collective action.

Collective action refers to a series of actions taken by a group of people working towards a common goal. In practice, this may involve the sharing of resources, knowledge and best practices. An example of this comes from Social Enterprise UK which published a report on the impact of COVID-19 on social enterprises, with case studies on how they are adapting to the crisis. This report, combined with a growing evidence base, is helping frontline social enterprises adapt to the new circumstances and continue to support vulnerable people.

There are also many great examples of knowledge sharing from within the HIV community, with charities and organisations meeting on a weekly basis to discuss insights and learnings. This coming together has been an important step in addressing the current needs of people living with HIV who have been impacted by this pandemic. As a next step, we must continue to be agile and adapt to the future needs of these people.

Photograph taken at Gilead’s HIV Age Positively Thinking Differently workshop in July 2019.

The HIV Collective

As we evolve as a community, so must our programmes. HIV Age Positively’s ethos of thinking differently and collaboration provides us with a platform to bring together communities to focus on the emerging new challenges that are presenting to the HIV community. By working together, we can ensure that the needs of people living with HIV are addressed now and in the future.

As such, Gilead is launching The HIV Collective, part of the HIV Age Positively programme, as a unified source of support and inspiration for all charities and patient organisations as they adapt and evolve to the ‘new normal’ this pandemic has created. The aim of The HIV Collective is to address the imminent threat of COVID-19 for people living with HIV, but also to help protect the future of the whole community, including the vital services provided by the charity and voluntary sector.

Over the next few weeks and months, Gilead will be rolling-out a series of resources to provide you, The HIV Collective, with inspiration and tools on how to meet the changing needs of people living with HIV. Gilead will also be offering immediate support to the HIV community through the CARES fund, an evolution of the HIV Age Positively grants programme which provides non-profit organisations impacted by COVID-19 with emergency funding.

Evolving today for tomorrow

As a first step for The HIV Collective, a group of patient organisation representatives convened at a virtual meeting to share insights and hear from an expert in behavioural psychology. The meeting highlighted the growing demands on the third sector. Community leaders shared that the lockdown restrictions, which caused A&E visits to drop to their lowest level in April and have meant people living with HIV are more reluctant or unable to access NHS services, are putting more pressure on HIV groups as a result.

Despite this mounting pressure, organisations have been working extraordinarily hard to address the structural barriers faced by their communities, with limited budget and resources. In the meeting, we heard how patient organisations have adapted and evolved their services to meet the immediate needs of their members. For example, Sahir House is one such organisation that has expanded their services to offer online counselling and mindfulness sessions for people living with HIV. This response mirrors the fact that more people are accessing mental health support online, with more than one million downloads of mental health apps since the start of the pandemic. Another example is from the Sophia Forum which is offering remote support to women who are experiencing or feel at risk of domestic abuse which has sadly increased dramatically since lockdown, with the number of calls to the National Domestic Abuse helpline rising by 49%.

Responding to the needs of all people living with HIV during these uncertain times involves thinking and doing things differently. For example, digital tools may play an important role in reducing social isolation, but not everyone can access online services, due to social or financial barriers. Facing a similar challenge, The CARES Family, a charity which aims to alleviate loneliness by connecting older and younger people, launched an #AloneTogether activity plan for members to get involved with, both online and offline. This demonstrates the importance of agility and adapting services to make them accessible.

Continuing to push boundaries

While the needs and behaviours of those living with HIV have seen a dramatic change since the start of the year, we can continue to embrace the spirit of collective action embedded in HIV to ensure we are striving for better futures for people living with the condition. It’s been incredibly motivating to see so many organisations adapting their services, despite the rising pressure on the charity and voluntary sector. This kind of agility will be essential as we navigate the COVID-19 pandemic and beyond.

We will be sharing news from The HIV Collective throughout 2020. Be sure to look out for updates to our website www.hivagepositively.co.uk and newsletters to hear more about its progress.

Document number: UK-HIV-2020-05-0062
Date of preparation: June 2020