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Uniting as one community to prioritise quality of life


December 2021 newsletter

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

As 2021 finishes, this is yet another year that people across the UK have faced unprecedented challenges as a result of the COVID-19 pandemic. For people living with HIV, however, the pandemic has brought a unique set of struggles as they have had to navigate life living with one virus in a world turned upside down by another. Throughout another strange year, your support of the HIV community has, as always, been phenomenal. Thank you for all that you do.

In the first few months of the pandemic, The HIV Collective was created and funded by Gilead Sciences (as part of the HIV Age Positively programme) as a source of mutual support for patient organisations as they adapted to support people with HIV throughout the pandemic. 21 patient organisations from across the UK and Ireland engaged with The HIV Collective which aimed to address the challenges of COVID-19, but also to protect the future of the whole community, including the vital services provided by the charity and voluntary sector.

One of the key priorities for The HIV Collective was to listen to and learn from the HIV community about how COVID-19 has affected them. Before the pandemic, people with HIV reported poorer health-related quality of life than the general population.1 After almost two years of living through the pandemic, Gilead, in collaboration with four patient organisations Africa Advocacy Foundation, HIV Scotland, Positively UK and Sophia Forum carried out a research project to find out what had changed for people with HIV, and developed the results into a new report published this month.


Understanding how COVID-19 has impacted quality of life for people with HIV


To understand the impact of the pandemic on the quality of life for people with HIV, Gilead carried out an in-depth survey of people living with HIV and HIV-negative people from the general population. Telephone interviews were arranged with eight people living with HIV to further explore their lived experiences during the pandemic.


From physical health and mental wellbeing, to financial impacts and disruption to HIV care, HIV, COVID-19 and quality of life: perspectives from the pandemic reveals a wealth of insights about the significant impact the pandemic has had on multiple areas of life for people with HIV. Of the learnings we uncovered, two in particular stand out: firstly, the toll that the pandemic has taken on individuals. Over 55% of people with HIV surveyed reported their physical health had deteriorated during the pandemic, compared to 30% of the general population. 81% reported feeling more stressed or anxious since the pandemic began, compared to 54% of the general population.2


Secondly, the report lays bare the vital role that patient organisations played in supporting the community, even as some struggled to fund the services that their members had come to rely on. Of people living with HIV who were a member of a patient organisation 84% agreed that they were a valuable source of support during the pandemic, with 9 in 10 people planning to continue engagement after COVID-19.2


If you would like to learn more about the impact of the pandemic on people living with HIV and the community as a whole, read the full HIV, COVID-19 and quality of life report here.



Uniting as one community to prioritise quality of life

Medical advances mean that many people with HIV today can expect to live as long as someone who is HIV negative.3 Despite this, the findings set out in this report have revealed the challenges that persist within the HIV community when it comes to achieving and maintaining quality of life, particularly during the COVID-19 pandemic.


Partnerships between industry, government, acadaemia and the voluntary sector have long played a role in accelerating progress in HIV, and we echo calls made by the HIV Commission for stronger alliances within and beyond the HIV sector.4 These partnerships are vital to ensure the most underserved people in the HIV community are not left behind.


Whilst funding uncertainties will undoubtedly create challenges for new and existing partnerships - it is crucial that we unite as one community to overcome these challenges and support people with HIV to not only live, but to live well now and in the future.

What next?

With the insights from this report, Gilead worked in collaboration with the HIV community to develop a new campaign, Find Your Four, for people living with HIV, which we hope will support individuals to think about the important areas of their broader health and wellbeing and to talk to their healthcare team about why they matter. The insights have also influenced our health literacy and peer mentor projects. We look forward to continuing to work with you in partnership to improve quality of life for people living with HIV across the UK & Ireland.


Whether you want to share your thoughts on the HIV, COVID-19 and quality of life report, or ask a question about the work we do, we would like to hear from you. Get in touch with one of the HIV Age Positively team at HIVAgePos@90ten.co.uk


We would also like to mention a HIV Age Positively event taking place in Q1 and acknowledge HAP is as relevant now as when it was developed with the HIV community. We will be hosting a HAP event to reunite, share best practice and together develop a HAP plan that will benefit the HIV community in 2022, further information will follow in due course. We are looking forward to seeing as many of you as possible.


Wishing you a lovely and well deserved break.



Document number: UK-UNB-1039

December 2021


References

1Public Health England. National survey of people living with HIV, Positive Voices, January 2020. Available at:https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/857922/PHE_positive_voices_report_2019.pdf
2 Data on file. Gilead Market Research: Quality of life during the COVID-19 pandemic April 2021 (UK-UNB-0063)
3Aidsmap, 2018. Life expectancy for people living with HIV. Available on: https://www.aidsmap.com/about-hiv/life-expectancy-people-living-hiv. Last accessed on: August 2021.
4HIV Commission, 2020. How England will end new cases of HIV. Final report & recommendations. Available at: https://www.hivcommission.org.uk/wp-content/uploads/2020/12/HIV-Commission-Full-Report_online_final_pages.pdf