Black people, racism and human rights – Inquiry by the Joint Committee on Human Rights
- National AIDS Trust is the UK's policy and campaigning charity.
- HIV is a public health inequality that disproportionately affects Black people in the UK, most acutely Black African people. In 2018, 57% of the 103,800 people accessing HIV care in the UK were of Black African ethnicity. 44% of all new HIV diagnoses among adults who acquired HIV heterosexually were Black African. 52% of Black African people diagnosed with HIV in 2018 were diagnosed late, compared with 42% of White people diagnosed. Late diagnosis increases the risk of ill-health, early death and onward transmission of HIV. Once a person living with HIV is diagnosed and on effective treatment, they cannot pass HIV on.
- There has been an overall decrease in the number of annual new HIV diagnoses in the UK with a 29% decline 2015 – 2018. This overall decline is driven largely by the decrease in the number of new diagnoses among gay, bisexual and other men who have sex with men, which have decreased by 39% since the 2015 peak. The decline amongst people of Black African and other Black ethnicity was not as fast or as steep. The steepest declines have been seen in gay and bisexual men who are White, with a 46% decrease between 2015 and 2018, and people born in the UK (46% in the same period), meaning the decline is not as significant amongst Black African and migrant gay and bisexual men.
- In Black African adults who acquired HIV heterosexually, there was a 27% decrease between 2015 and 2018. However, the numbers plateaued in 2017 and 2018, suggesting progress is somewhat stagnating.
- People of Black Caribbean and other Black ethnicity are also disproportionately affected by HIV, although considerably less so than Black Africans, representing just over 3% of all new diagnoses among heterosexuals in 2018.
- The public health inequality demonstrated by HIV disproportionately affecting Black people, especially Black Africans, is representative of wider inequalities faced by Black people in this country. The inequality and racism experienced by Black people living with HIV in the UK permeates through health and social care and through the immigration and detention systems.
- The HIV-related needs of Black communities receive neither the attention nor the resources they should from policy-makers, decision-makers and funders. Funding for HIV prevention services targeting Black, Asian and other minority ethnic (BAME) groups decreased by more than 50% between 2015 and 2017 in areas with a high prevalence of HIV, disproportionate to cuts elsewhere. The capacity of BAME-led organisations that could lead community-based activity has been significantly reduced by funding cuts.
- Although HIV Prevention England does target prevention activities at Black Africans as one of two key populations at risk of HIV (alongside gay and bisexual men), the inequality of progress described above shows that an increased focus is needed on effective interventions targeted at Black African groups.
- Despite the Black African population being at increased risk of HIV, there is lack of awareness among these populations of the benefits of PrEP (pre-exposure prophylaxis), a drug taken my HIV negative people to prevent them from acquiring HIV. PrEP has been routinely commissioned in Scotland since April 2017 and has been made available to 26,000 people in England since September 2017 through the PrEP Impact Trial, however recruitment of Black Africans to the trial was low. A study conducted in London and Glasgow in 2018 showed that among Black African and Caribbean women especially, recent prevention efforts have made little impact on lowering the rates of those newly diagnosed with HIV, which reflects the low uptake of PrEP. The study cited HIV-related stigma and institutional racism as barriers towards accessing PrEP and stated the importance of “creating institutional environments more welcoming of Black African/Black Caribbean women.”
- There are also issues with promotion and access to testing for Black African men and women, who are less likely to access sexual health clinic testing. Black African men are significantly more likely to be diagnosed late (65% late diagnosis rate compared to 43% overall). Late HIV diagnosis is associated with a tenfold risk of dying within the first year of diagnosis compared to those diagnosed promptly.
- The risk of HIV acquisition and Black Africans’ experience of living with HIV are pervasively influenced by the high levels of poverty, unemployment and poor housing faced by many people in these communities. These present barriers to community-led mobilisation and action which could support better prevention initiatives. Immigration-related restrictions (explored below) are a significant cause of such deprivation, though not the only one. We cannot meet the HIV-related needs of Black African communities in the UK without addressing wider structural inequalities.
- In 2018, almost half of those diagnosed with HIV in the UK who acquired HIV heterosexually were born in a country of high HIV prevalence. Most people (81%) diagnosed in 2018 and born in a high prevalence country were of Black African ethnicity. 36% of individuals who were first diagnosed and born abroad did not access HIV care within one year of their arrival in the UK. The fact that so many migrants with an existing HIV diagnosis took over a year to access HIV treatment upon arrival in the UK demonstrates a reluctance to engage with the healthcare system. This is in part due to the hostile environment policies which deter migrants from accessing healthcare to which they are entitled due to concerns of being charged for the treatment they receive.
- There are then those who have never been diagnosed who are not accessing testing when they arrive. Of those diagnosed in the UK in 2018 who were born abroad, 46% were diagnosed late at the point they did enter care for HIV.
- Despite the fact that HIV and sexual health services are freely available to all, regardless of immigration or residency status, the Charging Regulations continue to deter migrants from accessing the healthcare they need. Since 2017, NHS Trusts have had to charge patients upfront for care that is non-urgent or does not otherwise meet an exemption from charging.
- The system is complicated; it is difficult for individuals to navigate what is and is not chargeable and the fear of upfront charging deters access.
- Although HIV treatment is free, this is one component in managing an individual’s health, and many people living with HIV have at least one comorbidity. Charging migrants for healthcare pushes them away from healthcare settings and results in lost opportunities to offer HIV testing, as well as making HIV care more complex and challenging if migrants are unable to access other parts of the system to treat comorbidities.
- Since April 2016, NHS bodies (or debt collection agencies working on their behalf) have been encouraged to share nonclinical data of chargeable patients with the Home Office, via the Department of Health and Social Care, if they have outstanding debts of £500 or more that have been outstanding for two months or more. The data sharing policy further pushes migrants away from healthcare settings, even for treatment of exempted conditions such as HIV, due to the fear that seeking treatment and care will result in them being reported to immigration enforcement.
- While immigration status often intersects with ethnicity to contribute to poorer health outcomes, we know that this is only one of many factors. Black Africans with secure residency status are also disproportionately affected by HIV. Efforts to end this inequality therefore cannot stop at migration policy, but must tackle structural racism at all levels of our health and social care system.
- Immigration detention, including Immigration Removal Centres (IRCs) is the practice of holding people subject to immigration control in custody. According to Home Office policy, “Detention must be used sparingly, and for the shortest period necessary”. However, data recently released by Detention Action shows that Black people are detained significantly longer than white people. Citizens from countries with predominantly black and brown populations are held for substantially longer periods than those from predominantly white countries; during 2019, 90% of Canadian nationals were released within seven days compared with 17% of Zimbabwean nationals.
- We know anecdotally of cases where people living with HIV have been denied access to ART while held in immigration detention. We also know of cases where individuals living with HIV have been removed from the country and returned to their countries of origin where there were no adequate provisions of ART.
- It is vital that people living with HIV who are being held in immigration detention, many of whom are Black, receive good quality HIV treatment and care. HIV prevention should also be promoted in detention facilities, via opt-out testing and access to sexual health information. People held in immigration detention are entitled to the same level of care as the general population, including rights around confidentiality and involvement in their own care.
 Public Health England, “HIV in the United Kingdom: Towards Zero HIV Transmissions by 2030,” December 2019, https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/858559/HIV_in_the_UK_2019_towards_zero_HIV_transmissions_by_2030.pdf, 40.
 Ibid., 20
 Public Health England. National HIV surveillance data tables to end December 2018. Tables No. 2: 2019.; Someone is considered to have been diagnosed late if they have a CD4 count below 350 cells/mm³ within three months of diagnosis.
 Public Health England, “Trends in New HIV Diagnoses and in People Receiving HIV-Related Care in the United Kingdom: Data to the End of December 2018,” Health Protection Report 13, no. 31 (September 6, 2019), https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/835084/hpr3119_hiv18-v2.pdf, 2.
 Ibid., 3.
 Public Health England, “HIV in the United Kingdom: Towards Zero HIV Transmissions by 2030,” December 2019, https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/858559/HIV_in_the_UK_2019_towards_zero_HIV_transmissions_by_2030.pdf, 20.
 National AIDS Trust, “UK investment in HIV prevention 2015/16 and 2016/17,” February 2017, https://www.nat.org.uk/sites/default/files/publications/NAT_PREVENTION%20REPORT_V2.pdf, 5.
 Ibid., 5-6.
 Nakasone SE et al. Risk perception, safer sex practices and PrEP enthusiasm: barriers and facilitators to oral HIV pre-exposure prophylaxis in Black African and Black Caribbean women in the UK. Sexually Transmitted Infections, online ahead of print, 12 June 2020; Krishen Samuel, “Why Aren't More Black African and Caribbean Women in the UK on PrEP?,” June 25, 2020, https://www.aidsmap.com/news/jun-2020/why-arent-more-black-african-and-caribbean-women-uk-prep.
 Public Health England, “HIV in the United Kingdom: Towards Zero HIV Transmissions by 2030,” December 2019, https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/858559/HIV_in_the_UK_2019_towards_zero_HIV_transmissions_by_2030.pdf, 9.
 Public Health England, “HIV in the United Kingdom: Towards Zero HIV Transmissions by 2030,” December 2019, https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/858559/HIV_in_the_UK_2019_towards_zero_HIV_transmissions_by_2030.pdf, 20-21..
 Ibid., 40.
 Public Health England, “Positive Voices: The National Survey of People Living with HIV Findings from the 2017 survey,” January 2020, https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/857922/PHE_positive_voices_report_2019.pdf, 33.
 UK Visas and Immigration, Enforcement Instructions and Guidance, Chapter 55: use of detention, paragraph 55.1.3.
 Mark Townsend, “Home Office 'Uses Racial Bias' When Detaining Immigrants,” The Guardian, June 21, 2020, https://www.theguardian.com/politics/2020/jun/21/home-office-uses-racial-bias-when-detaining-immigrants.
 National AIDS Trust, “Immigration detention and HIV Advice for healthcare and operational staff,” March 2019, https://www.nat.org.uk/sites/default/files/publications/immigration_detention_and_hiv.pdf, 12.