Reducing Infectious-Disease Stigma
At the onset of a worldwide public health crisis in the late 80s, a series of adverts were designed to raise awareness of the Infectious Disease, AIDS epidemic in the United Kingdom. The UK government’s Don’t Die of Ignorance campaign is etched in the memories of many. Opening with the eruption of a volcano and dark ominous music accompanied by a voiceover from John Hurt, it described a deadly disease which could be spread from an “infected person” and how “anyone can get it”. It warned the British public to protect themselves and not to die of ignorance, as a bouquet falls on a tombstone with “AIDS” etched across it. Although the advertisement saved lives, it likely contributed to the stigma that still surrounds HIV more than thirty years later.
The advances in HIV care with antiretroviral therapy have dramatically improved the lives of people living with HIV. Early diagnosis and treatment have led to people living with HIV having the same health and life expectancy as the general population. In addition, successful treatment can prevent onwards transmission of HIV, known as U=U (Undetectable equals Untransmittable). This public health message has the power to help tackle some of the antiquated stigma faced by persons living with HIV. Living with HIV is not a barrier to any form of employment and is not a barrier to having children, as effective therapy means babies born to mothers living with HIV do not have the infection.
The Health Protection Surveillance Centres (HSPC) most recent annual data for 2022 showed a large increase (68%) in the overall number of diagnoses of HIV in Ireland, compared to pre-pandemic year 2019. This is largely attributable to an increase in diagnoses amongst people with a previous diagnosis outside of Ireland. Amongst new diagnoses, 84% reported their region of birth to be – Latin America or Caribbean (32%), sub-Saharan Africa (27%) or Eastern Europe (25%). While this group are unlikely to have benefitted from HIV prevention strategies in Ireland, it is imperative that they are promptly linked with HIV care to on arrival in Ireland for their own benefit and to prevent onward transmission.
The rate of first-time HIV diagnoses (3.4 per 100,000 population) decreased by 16% in 2022 compared to pre-pandemic year 2019 and is lower than the rates between 2012 and 2018. The key population group affected by HIV in Ireland remain gay, bisexual and other men who have sex with men (gbMSM), accounting for 58% of first-time diagnoses in 2022. Eighty percent of first-time diagnoses in gbMSM in 2022 occurred in those born in either Ireland (41%) or Latin America and Caribbean (39%).
Heterosexuals accounted for 34% of first-time diagnoses in 2022 and the number of first-time diagnoses among heterosexuals is 33% lower than the peak in 2018. Over two thirds of diagnoses among heterosexual females (69%) are in those born in sub-Saharan Africa while the largest proportion of diagnoses among heterosexual males were born in Ireland (50%).
The number of first-time diagnoses among people who inject drugs (PWID) remains low and accounts for <5% of new diagnoses.
Among people with a first-time HIV diagnosis, 45% were diagnosed late (CD4 count <350 cells/μl) which is similar to the proportion diagnosed late in recent years. This is of concern as it has been shown that late HIV diagnosis is associated with poorer outcomes and an increased likelihood of ongoing HIV transmission. Groups with a higher proportion presenting late in 2022 were: females; those aged 50+years; those born in sub-Saharan Africa; living outside HSE East; PWID; and heterosexual males.
In 2019, the four cities Dublin, Cork, Galway and Limerick, signed up to the HIV Fast-Track Cities (FTC) Initiative, committing to scale up local HIV responses to help end the HIV epidemic by 2030. As people living with HIV are living longer, the total number of people living with HIV in Ireland, who require HIV care and support services, continues to increase.
In 2022, the HSE Sexual Health and Crisis Pregnancy Programme (SHCPP) conducted a scoping study of available HIV data, services and support in the four Fast-Track Cities, to provide a baseline description of existing HIV prevention and support services, to document the current challenges and gaps, and make recommendations to inform the development of Fast-Track City implementation plans.
The report published in August 2024 brings together findings from 193 participants across public health, adult public HIV clinical services, NGOs and community organisations, people living with HIV, HIV networks/member organisations, and city-level public structures. The report identifies a range of challenges and gaps across all stakeholder groups. One key recommendation from the report outlined the need to address HIV related stigma to improve access to HIV prevention, care and community support services.
A recent survey conducted by RCSI identified a significant lack of knowledge amongst healthcare workers regarding HIV and found that 75% of those surveyed had witnessed stigma from colleagues in relation to those living with an infectious disease.
The survey was conducted in the development of a new module for healthcare workers and students on HIV stigma by the RISE project, via the Department of International Health and Tropical Medicine. Carried out between June and November 2023, the study was aimed at both healthcare workers and healthcare students in Ireland. It had 117 responses – 67 healthcare workers, 20 students and 20 ‘other’.
Responses in the survey included examples of stigma witnessed, which included overuse or unnecessary use of personal protective equipment and double gloving for persons living with HIV. Other anecdotes included reluctance regarding carrying out surgical procedures or phlebotomy on persons living with HIV or placing those patients last on procedure lists. Other worrying examples from a nurse in the survey outlined witnessed stigma of “nursing staff wearing gloves when touching patients, contact precaution signs on room doors of persons living with HIV and being quick to change resuscitation statuses on younger patients on which they normally wouldn’t”.
Participants in the survey also outlined that there was an assumption of an association with “risky behaviours, such as intravenous drug use or sexual promiscuity and persons living with HIV”. 85% of participants ranked HIV as either the first or second most stigmatised against disease and also indicated that patients can feel unsure of disclosing their HIV status due to a negative reaction and also worry that their disclosure will not be treated confidentially. 23
Overall, a lack of knowledge was identified amongst healthcare workers about HIV transmission and risk factors, with only 42% of healthcare workers and 27% of healthcare students receiving education on HIV stigma and discrimination. Only 45% of healthcare workers reported completing further training or CPD related to HIV since qualifying, however of those who have not engaged with CPD on HIV, 68% said they would if available.
It is vital that there is a continued focus on HIV prevention to meet UNAIDS targets for zero new infections by 2030. Ireland has free HIV treatment available to all persons living with HIV and a national PrEP (pre-exposure prophylaxis) programme since 2019. Free HIV testing is available through a number of services in Ireland, including both healthcare and community based settings. The National HSE home STI testing provides home testing and the MPOWER programme within HIV Ireland has a HIV self-testing programme for gbMSM.
The future of HIV medicine continues to ever expand with ongoing research and breakthroughs in treatment. Research presented at the Conference on Retroviruses and Opportunistic Infections (CROI) highlighted advances in long-acting oral HIV treatments and injectables. In a large clinical trial in Africa (CARES study), injectable HIV treatment proved as effective in maintaining viral suppression as standard oral antiretroviral treatment. The first injectable regimen, consisting of an integrase inhibitor cabotegravir and a NNRTI rilpivirine, is already approved in Europe and North America and consists of intramuscular injection every two months. Another study also showed that a once-weekly oral regimen of lenacapavir and islatravir can keep HIV suppressed as effectively as daily pills.
A new case of long HIV remission was reported at the 25th International AIDS Conference (AIDS 2024), fuelling optimism for an eventual cure. In 2007, the first Berlin patient was the first person considered to be cured of HIV. He underwent a stem-cell transplant to treat leukaemia from a donor with the rare genetic mutation CCR5-delta 32, which is known to provide genetic resistance to HIV. The success of this treatment was followed by four similar treatments resulting in sustained remission. A fifth case was reported in 2023 with prolonged HIV remission from a donor with the genetic mutation. The most recent case presented was in a 60-year old German man with acute myeloid leukaemia who underwent a blood stem cell transfer from a donor with a single CCR5-delta 32 mutation, meaning not all cells were fully immune to HIV. He discontinued his antiretrovirals in 2018 and HIV has not been found in multiple tissue samples since. Although this does not have direct clinical implications as stem cell transplants are reserved only for patients requiring same for malignancy, it does pose questions regarding ongoing research in gene-editing techniques to stimulate these resistant cells to eventually develop a cure for HIV.
All healthcare workers should continue to be educated and updated regarding HIV and the ongoing initiatives to reduce new infections, onwards transmission and HIV-related stigma. With the upcoming World AIDS Day on December 1st, it should prompt all healthcare workers to initiate conversations regarding HIV, the significant work currently underway both in Ireland and globally and how best we can advocate for and improve the lives of persons living with HIV. It should lead to expanded testing to ensure people get diagnosed early, get care needed and to prevent onward transmission.
RISE project link
https://riseproject.thinkific.com/ courses/RISEproject
RISE launch
https://www.rcsi.com/dublin/ news-and-events/news/ news-article/2024/06/76-per-cent-of-healthcare-workers-and-students-witnessed-disease-stigma-rcsi-survey-reveals
Written by Dr Pádraig Morrissey, Senior House Officer in Infectious Diseases, and Dr Eoghan de Barra, Consultant in Infectious Diseases
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