A manageable condition
In the past, HIV infection nearly always resulted in death. Now, with prompt diagnosis and the right treatment, it can be a manageable condition, with those affected likely to live long and healthy lives.
However, this is not the case for everyone. For those who are unaware of their diagnosis or where treatment is difficult or out of reach, HIV still causes poor health, reduced quality of life and even early death.
East London has some of the highest rates of HIV infection in England. People in boroughs such as Tower Hamlets, Newham, and Waltham Forest endure some of the worst health outcomes in the whole of the UK.
The SHARE Collaborative
With the help of our funding, the Sexual Health And HIV All East Research (SHARE) will explore why some groups of people fare much worse than others following an HIV diagnosis.
The multidisciplinary team, made up of clinicians, scientists, and members of the community, hopes to find ways to prevent future HIV infections and trial innovative new treatments.
A better quality of HIV patients
Chloe Orkin, Professor of HIV Medicine at Barts Health NHS Trust and Queen Mary University of London, is setting up and leading the research centre. She says that there are many underlying reasons why people in East London fare particularly badly:
“HIV has the greatest impact on some of the most marginalised and socially disenfranchised people, including people from black and ethnic minority communities and those living in poverty. These groups are also more likely to experience other health conditions such as hepatitis, heart problems, and poor mental health. Stigma around HIV remains high, which gets in the way of good HIV and sexual health outcomes.
“We know that people who are diagnosed late or who have other health problems often experience poorer health. This is often the case among more marginalised and minority groups who tend to experience multiple health inequalities. We need to find better solutions that are tailored to people’s circumstances and which will enable more people to live longer healthier lives.
“My hope is that our research programme will lead to a better quality of life for everyone affected by HIV, within the diverse communities of East London, as well as throughout the UK and beyond.”
Reaching underrepresented groups
One area of focus will be the development of new treatments for the 8,100 people with HIV in the UK who find daily oral therapy hard to manage. Alongside this, researchers will design trials to encourage involvement from historically underrepresented groups. This includes women, older people, and people from black and minority ethnic backgrounds.
The Sexual Health And HIV All East Research (SHARE) has received more than £1.6 million funding from Barts Charity. It will bring together expertise from Barts Health NHS Trust and the Faculty of Medicine and Dentistry at QMUL. They will work alongside members of the local community and with colleagues across the health and care system in East London.
Shamal, from Waltham Forest, was diagnosed in 2013 and says:
“As an individual living with HIV from a Muslim, British South Asian background, I found it a huge challenge accessing my sexual health clinic in East London. The work of the SHARE collaborative is hugely important to identify the barriers to accessing sexual health services for South Asian communities.
“As a Senior Peer Support worker, I use my lived experience to support other individuals living with HIV, encouraging them to dismantle self-stigma and shame; empowering them to live well with the virus.
“As a responsible sexually active adult it is my responsibility to engage with sexual health services to prevent, treat and protect myself and my partners from contracting/transmitting sexually transmitted infections.
“The SHARE collaborative will bring research and learning together to improve sexual health inequalities, encouraging our communities to take control of their own sexual health and improve their wellbeing.
"The SHARE collaborative will bring research and learning together to improve sexual health inequalities, encouraging our communities to take control of their own sexual health and improve their wellbeing."Shamal