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Tackling HIV discrimination with opt-out testing and rich data

HIV

MP for Vauxhall and Co-Chair of the APPG on HIV and AIDs, Florence Eshalomi and London’s Public Health Director and the Government’s Chief Advisor on HIV, Professor Kevin Fenton sat down together at Chamber UK to mark 40 years since AIDs was first named by the scientific community.

Tackling Stigma

Professor Fenton opened the discussion with: “Stigma, forty years into this pandemic, is the reality for so many people. Some of it is the fear of being diagnosed, some of it is still the ignorance around HIV, the fear of being diagnosed with HIV and the stigma of being HIV positive. And so, we have a real opportunity now to create an action plan with the recommendations that came from the APPG report.”

Last month, the All Party Parliamentary Group (APPG) on HIV and AIDs launched “Nothing about us without us”. This report shines a light on HIV, addresses the needs of Black, Asian and Minority Ethnic communities in the UK and aims to end new transmissions of HIV by 2030.

“Stigma, forty years into this pandemic, is the reality for so many people. Some of it is the fear of being diagnosed, some of it is still the ignorance around HIV, the fear of being diagnosed with HIV and the stigma of being HIV positive.”

Professor Kevin Fenton

Reflecting on the report, Eshalomi said: “The report was really important because obviously, we celebrated forty years of HIV and the pandemic this year. Now, what we have been looking at is the fact that for a number of people – predominately black minority ethnic people – there are still so many inequalities that they experience. And we cannot say that as a country, as a nation, that we want to stop new transmissions without bringing along a large section of the community who are, sadly, still impacted by HIV and AIDs.”

According to Professor Fenton, the report: “Sets a bold target to both reduce HIV and end HIV transmission in England by 2030. It also sets targets to reduce the number of people diagnosed with HIV and AIDs over the next three years and aims to ensure that we’ve completely reduced the number of people dying from this infection.”

White perspective

Inequalities in the healthcare system relating to HIV are proven to affect the patient population in Black, Asian and Minority Ethnic communities. “We looked at the campaigns over the last forty years and, I think it’s fair to say that it has been seen through the lens of white practitioners and white people living with HIV and AIDS. In some of the statistics around late diagnosis in the UK, we see 47% of black Africans being diagnosed late. Of that 47%, over 79% are women. That’s really alarming for me as a black woman commented Eshalomi.

How do we raise awareness of HIV discrimination, how do we get ethnic minority groups to access services and how do we help people feel confident to go to their GP or community clinics? These are some of the questions that our guests explore in the full discussion:

View the full discussion here

Rich data

The Co-Chair of the APPG noted that data was a key issue in the report. She said: “Unfortunately, the data on the amount of black, ethnic minority people living with HIV and AIDs was quite patchy across the four nations in the UK. There was a report in Wales where, essentially, they didn’t have any data.

“We then found out that, centrally, in the NHS, that data wasn’t connected. So how are we going to address and help these people if we don’t have the data on them?”

The medical industry needs rich data that can understand the nuances between different communities, to tackle discrimination with HIV testing. As part of the HIV action plan, the APPG has partnered with the UK Health Security Agency (UKHSA).

Commenting on the partnership, Professor Fenton said: “They’re looking at an entirely new and revised framework for monitoring our progress over the next few years as we approach the elimination and end of HIV transmission by 2030.”

Opt-out testing

Eshalomi took the opportunity to highlight that opt-out testing is “a key, really simple change that will help us identify people living with HIV” and Professor Fenton noted that testing is “one of the APPG’s flagship initiatives.”

As many as 20,000 people are infected but undiagnosed with HIV in the UK. The NHS in England has invested more than £20 million to implement a service that offers those in high prevalence areas an HIV test as part of their standard preventive screening tests. This means that testing is routinely offered and it prevents communities from feeling targeted. If a person is HIV positive, they are contacted and re-engaged into care so that they can benefit from lifesaving treatment.

Commenting on the testing, Professor Fenton said: “This is an important, new advance for us. It will help us uncover and diagnose the ten thousand to fifteen thousand people whom we know could benefit from this.”

Final thought

The report points out that we have the tools to end this pandemic. HIV opt-out testing and rich data coupled with highly effective treatment can tackle discrimination, drive rates of infection down and, hopefully, eradicate HIV and AIDS in the UK by 2030. Now we only need persistent government action to make it happen.

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