The All Party Parliamentary Group HIV and AIDS launches its report “Nothing about us without us.” This report looks specifically at addressing the needs of Black, Asian and Minority Ethnic communities in relation to HIV in the UK.
HIV emerged 40 years ago this month and created an epidemic that still devastates the communities it affects today.
We’ve made huge progress in the fight against HIV since the dark days of the epidemic. In the UK new cases of HIV have fallen by over a third in the last five years, with diagnoses among gay and bisexual men nearly halved. The extraordinary advances in HIV treatment now mean the majority of people living with HIV have a normal life expectancy and, even more remarkably, can not pass on the virus to their sexual partners.
But that same progress in reducing transmissions isn’t being experienced across all groups. Diagnoses among women – who account for a third of all people living with HIV in the UK, and more than half globally – fell by only 4% in 2019, compared to 10% across the general population. Almost half of new HIV diagnoses among heterosexuals in the UK are among Black African men and women, despite this group making up less than 2% of the British population. These communities are less likely to access the anti-HIV drug, PrEP, which finally became routinely available on the NHS in April 2020 after continuing delays by the government.
By looking exclusively at HIV, this report addresses how inequalities affect a patient population in which Black, Asian and Minority Ethnic vulnerable groups are disproportionately represented. The report makes the following key recommendations:
1. Opt-out HIV testing across all health care settings across the UK;
2. More tailored and targeted HIV interventions are needed to reach out to Black, Asian and Minority Ethnic communities;
3. A UK wide campaign to educate the general population with good Black, Asian and Minority Ethnic representation on the benefits of PrEP needs to be formed and implemented;
4. Anti-stigma campaigns and interventions to increase understanding, dispel myths and change attitudes towards HIV and HIV testing are needed to engage with under-served ethnic minority groups;
5. Progress on addressing current inequalities that disproportionately impact these communities should be detailed in annual reporting.
Florence Eshalomi MP – Vice Chair of the Party Parliamentary Group HIV and AIDS said:
“The history of HIV has been largely seen through a white lens, as an illness drawing attention largely for ravaging white men and highlighted by cultural touchstones like the film Philadelphia, about a gay white man who had AIDS.
“If we are to meet the target of halting new HIV transmissions by 2030 the voices, experiences and needs of Black, Asian and Minority Ethnic communities must be given specific focus and support as part of the action plan. We cannot end transmissions whilst leaving any group behind.
“I represent Vauxhall an area that has a large Black population and one of the highest rates of HIV prevalence in the country. I have seen first-hand the inequalities they face day to day. If we are to end HIV in the UK then we must tackle those inequalities and ensure there is equitable and easy access for all to HIV testing, prevention and care.
“Nothing about us without us” is not just a phrase, it is a request. Only meaningful involvement of the diverse communities of the UK will end new transmissions of HIV by 2030, combat stigma and ensure that all people living with HIV enjoy real quality of life.”
Marc Thompson said:
“Since the beginning of the global HIV pandemic over 40 years ago, people from racially minoritised communities - particularly people of Black African descent - have been disproportionately impacted by HIV worldwide.
“The COVID-19 pandemic has highlighted existing health inequalities, across almost every health condition. Therefore, it should be no surprise that these same inequalities will exist across HIV.
“I’ve been working in HIV and sexual health for over three decades and have witnessed the impact of this exclusion. If we are to ever really make progress and meet the ambitious target by 2030, these lives must really matter, their voices must be heard, and their needs must be acknowledged and recognised.”
We cannot end the UK HIV epidemic unless all of us have a seat at the table.
Dr Rageshri Dhairyawan said:
“In my day-to-day clinical practice I still see people who are not benefitting from the many advances that we have seen in HIV. People continue to suffer life-changing disability or die from AIDS-related conditions. These are often people diagnosed late, or not on medication or engaged in HIV care. These are often people from communities which have been marginalised, including racially minoritised groups.”
“Ethnic health inequalities in HIV and beyond reduce life expectancy and quality of life for people from racially minoritised groups. This is a matter of human rights and social justice, as well as about meeting targets to end the AIDS epidemic.
“I therefore welcome this timely and important report, which sets out the evidence regarding ethnic inequalities in HIV, looks at the gaps and suggests actions at multiple levels to tackle them. It is only through intersectoral working that effective change can be realised.”
For further information, please contact Mark Lewis on 07964473063 or mark.lewis@parliament.uk
Notes for editors:
The APPG put out a call for written evidence on 14th May 2021 and we received 26 submissions. We also held two oral evidence sessions on 30th June and 1st July 2021. This inquiry deals the issues faced by the Black, Asian and Minority Ethnic communities in relation to HIV.
We recognise that initially it has been seen to be helpful to refer to many different people at once, to use the term Black, Asian and Minority Ethnic. However, this term has now become reductive. By attempting to represent many communities at one time, it simultaneously lacks specificity and ultimately groups a diverse range of people and experiences under dated terminology. For example, while some experiences are shared across communities, health inequalities will inevitably show up differently in a Pakistani community in northern England, Somali community in South Wales, Indian community in Scotland compared to a Black Caribbean community in central London as differing determinants of health. The conundrum we have seen doing this inquiry of using the term Black, Asian and Minority Ethnic highlights the need to clarify who we want to specifically address, and in what context, and how we refer to people. Therefore we would urge the four governments to work with a large diverse range of racial and ethnic communities and organisations, using the principles of co-production and meaningful involvement, to create a consensus around more acceptable terminology to be used by the HIV sector and with communities directly.
Stats:
New Diagnosis: UK IN 2019 - 4139
Ethnicity
Male
Female
Total
White
1660
305
1965
Black African
316
446
762
Black Caribbean
49
34
83
Black other
45
33
78
Asian
201
52
253
Other/mixed
301
82
383
Unknown
428
187
615
Between 2014 and 2019 there was a 50% decrease in number of new diagnoses amongst the White population and a 46% decrease amongst new diagnosis amongst individuals of a Black ethnicity. In comparison, the decrease was only 36% amongst Asians.
- 2 in 10 respondents were able to identify the main, or potential routes of HIV transmission, without also identifying any incorrect routes.
- just 16% of the general population were aware HIV treatment stops HIV from being transmitted. If a person is on effective treatment, they cannot pass HIV on and can expect to lead a long and healthy life.
- only a quarter of the general public knew there is medication available to prevent someone from acquiring HIV (PrEP)
- 67% of people believe that people with HIV will always go on to develop AIDS
- 21% of Black people believe this
- 30% of Asian People believe this