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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.
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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
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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?
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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.
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