Addressing HIV stigma in healthcare and society

Prof Fiona Lyons, HSE National Clinical Lead for the Sexual Health Programme, speaks to Niamh Cahill about the Executive’s new campaign to tackle HIV stigma in Ireland

Healthcare settings and healthcare workers are not exempt from the problem of HIV-related stigma. 

“It’s not just Ireland. Stigma is a big issue everywhere,” comments Prof Fiona Lyons, who has worked in the field of HIV treatment for more than 20 years.

“The virus doesn’t discriminate so we shouldn’t be discriminating,” added Prof Lyons, HSE National Clinical Lead with the Sexual Health Programme and Consultant in Genitourinary and HIV Medicine at St James’s Hospital, Dublin. “The stereotyping of who gets HIV is very harmful and stigmatising. Anyone can get HIV. The virus does not care who it infects.”

The HSE is seeking to address stigma and misconceptions with its new nationwide campaign in partnership with people living with HIV, called ‘You, Me and HIV’.

A survey of 1,000 adults in Ireland conducted last November found that seven-in-10 people did not know that a person living with HIV on effective treatment cannot pass the virus on to sexual partners.

Furthermore, a report on HIV-related stigma in healthcare settings in Ireland, published by University of Galway and HIV Ireland in 2023, found that 40 per cent of healthcare workers would worry ‘at least a little’ about drawing blood from a person living with HIV.

Some 25 per cent of healthcare workers had observed a colleague ‘talking badly’ about a person living with HIV at least once in the previous 12 months and 21 per cent reported using special measures that they would not use with other patients, the report found.

Prof Lyons admitted that she has witnessed stigma from healthcare professionals in the course of her work. There are quite shocking levels of stigma in healthcare settings, she said.

“Stigma is usually based on an untrue belief about something, so we de-bunk the myths. Does it shock me? Yes, it does shock me. And it also shocks me what still happens in healthcare settings.” Prof Lyons said the level of stigma in healthcare settings has reduced. 

She added that once healthcare professionals are informed and have the required knowledge, this generally addresses the issue.

“It’s awful for people to be at the receiving end of stigma and stigmatising comments and it’s really damaging to individuals,” emphasised Prof Lyons. “But it also is a disincentive to people to come forward for testing and treatment because of the perception that they will be judged or stigmatised if they are living with HIV.”

It’s awful for people to be at the receiving end of stigma and stigmatising comments and it’s really damaging to individuals”

Presentation

According to 2023 data, almost 40 per cent of new diagnoses had evidence of late infection by the time of presentation for treatment. That’s not because of stigma alone, according to Prof Lyons, but it certainly plays a role.

“We need to normalise having a HIV test, to normalise having a HIV status. Everyone has a HIV status, and everyone deserves to know what their HIV status is, so that if you are living with HIV you can get the advantages of medication. People can live well with HIV, but we need to make sure they’re thriving with HIV and tackling stigma is part of that.”

A recent report on HIV rates from the HSE Health Protection Surveillance Centre (HPSC), which contains provisional data subject to confirmation, stated that in 2024 there were 1,023 new cases in Ireland.

Quoting 2023 data, which has been reviewed and confirmed, Prof Lyons said that 911 HIV diagnoses were made in Ireland that year. The majority of these diagnoses (61 per cent) were in people already known to be living with HIV. Some 19 per cent were in people diagnosed with HIV for the first time and 20 per cent had an unknown history. In 2023, Ireland had a HIV notification rate of 17.7 per 100,000 population, “and that is higher than other Western European countries”, Prof Lyons remarked. However, she noted that data in other countries is not always collated in the same way as it is in Ireland (ie, the Irish data is comprised of all newly notified infections, including diagnoses made in other countries).  

“Of the 911 cases 61 per cent previously knew their diagnoses and a significant proportion of those were people who came to Ireland seeking refuge, including people from Ukraine,” Prof Lyons said.

“That reflects the inward migration of people coming to live and work in Ireland who are living with HIV already. That would have been the trend we’re seeing in the last number of years, where a large proportion of apparent new diagnoses are actually in people already known to be living with HIV.

“If you take actual first-time diagnoses, that gives us a rate of 3.4 per 100,000 population, which has been coming down over the last number of years. Not all of those 173 first-time diagnoses would have acquired HIV in Ireland. [Some of the people] may have come to Ireland, been diagnosed in Ireland, but likely acquired infection elsewhere.”

There was a 15 per cent decrease in the rate of first-time HIV diagnoses in Ireland (no history of a previous HIV diagnosis) in 2023 compared to 2019.

An estimated 8,000 people were living with HIV in Ireland in 2022, according to a HSE HIV Treatment Audit conducted in 2023. Just over 7,000 people attended for HIV care in 2022, 67 per cent of whom were male.

The median age of those attending for treatment is getting older and was 44 years in 2022. Some 31 per cent were aged 50 years and older. People attending for care were originally from over 130 different countries. This pointed to the need for services to be appropriate for older age groups and various ethnicities and cultures, the Audit report highlighted.   

What can be done to address stigma?

 Whilst there is ongoing HIV stigma across society, including in healthcare settings, efforts are underway to tackle the issue globally.

The Joint United Nations Programme on HIV/AIDS has a target of zero HIV-related stigma by 2030. The HSE’s campaign is part of a global effort to eliminate stigma. People living with HIV are a central part of the HSE’s campaign to raise awareness and provide factual information to the public.

“The people living with HIV are absolutely, to my mind, the game-changers for this because they’ve had the courage and the strength to come forward and put their head above the parapet, including healthcare workers living with HIV,” Prof Lyons said.

Education is an important factor in addressing stigma and resources are available for healthcare workers to access more information.

The RCSI has developed an e-learning programme to help educate healthcare workers about HIV, stigma, and best practices in caring for patients with HIV. More information is available here:

Information is available for the general population on the HSE website at www.hse.ie/HIV

The HSE Sexual Health Programme has launched an e-learning programme, available at HSeLandD, which contains information for healthcare professionals on aspects of stigma and the importance of HIV testing, Prof Lyons added.

On the subject of de-bunking myths, some perceive HIV as mainly affecting gay, bisexual, and other men who have sex with men (gbMSM)  and people who inject drugs (PWID). According to HPSC data for 2023, gbMSM remained the key population group affected by HIV in Ireland. However, heterosexuals accounted for the highest proportion of total diagnoses. HIV transmission among PWID remained at “consistently low levels”.

“In 2023 of the 173 first-time diagnoses, 50 per cent of cases were acquired heterosexually, 40 per cent among gbMSM and 3 per cent [were] people who inject drugs [remaining percentage unknown],” said Prof Lyons.

“There are some people we make recommendations for, based on their lived experience, to come forward frequently for testing. But to everybody else we say don’t ignore your HIV status because you deserve to know what it is.

“People who have acquired HIV through heterosexual sex are more likely to have evidence of late infection when they present than other groups. Some of that is probably attributable to their perception, ‘well it doesn’t apply to me’.”

Testing and treatment

The HSE operates a free sexually transmitted infection (STI) home testing service. Launched in 2022 after a successful pilot in 2021, the service facilitates individuals aged 17 and over to order a kit online through the HSE website.

A person performs the test at home and sends back test samples to the HSE before getting a result. This allows people to self-test in the privacy of their own home, Prof Lyons said.

Other routes to testing are through GPs, student health clinics, public health clinics or peer-led and non-governmental organisations. People access HIV testing in different ways as they do with all healthcare services, according to Prof Lyons.

“Once the [home testing] service started it was really very popular from the get-go. We know that during the pilot 57 per cent of people who used it had never engaged with STI testing before.”

Currently, between 10,000-11,000 STI testing kits are dispatched every month around the country. In 2024, some 126,090 kits were ordered and dispatched.

Demand for STI home testing kits has risen steadily since the service was launched. The rate of returned kits has also risen from 62 per cent in 2022 to 69 per cent in 2023 and 72.5 per cent in 2024. Overall funding for home STI testing is €4.82 million in 2025. 

“We know that these models are cost-effective. This [home STI testing] is particularly targeting people who don’t have symptoms and who can navigate the online platform. It’s not for everyone, but will be for a significant number of individuals,” Prof Lyons told MI.

The home test can provide a reliable negative HIV result (although the window period must be taken into account). However, an individual will not get a definite positive result from the test, because the sample given is so small.

The test is a first step in the HIV testing algorithm. “Individuals who get a reactive result will go forward for additional testing to have a full blood sample drawn in the traditional way,” Prof Lyons noted.

“The HIV testing kit has a low threshold for picking up things. Some of the tests that are reactive will subsequently not prove to be positive. But it does lead to new diagnoses every year.”

The “window period” is the time from a person’s exposure to HIV and when HIV can be clinically detected and is dependent on what type of test is being done.

“The test done here is a 4th generation test and the window period is at least 45 days after last potential [exposure],” Prof Lyons said.

This means that a person may have to repeat a test at a later time, depending on the date of their last exposure, to definitively determine whether or not they have contracted HIV.

Separately, if a person thinks they may have had a potential exposure they should come forward for post-exposure prophylaxis. In this instance medication is taken within 72 hours of a potential exposure to prevent getting HIV, Prof Lyons said.

A person can live with HIV for many years and display no symptoms. Prof Lyons explained that about two-thirds of people who acquire HIV will experience a viral-type illness within the first couple of weeks.

“The virus happens to be HIV and that’s our body and the virus interacting with each other; our immune system trying to clear the virus. But for the vast majority of people, they can’t clear it. Symptoms would be headache, fever, rash, and generally feeling tired, with a sore throat, that kind of thing. Then that settles down and people go into a period of latency where they don’t necessarily know they have HIV and wouldn’t have any symptoms.”

This time period varies but may last for 10 years or longer.

Children who contract HIV through perinatal transmission – which is also clinically preventable – will progress to an AIDS-defining illness within the first year of life if they don’t receive appropriate treatment. Illness in people who acquire HIV later in life also progresses more quickly when untreated.

Being on treatment that’s working well is very effective

Research

Research is ongoing into the development of better HIV drugs. Prof Lyons believes that a cure will likely be found, although this could be years away.

“The important thing is we effectively have a cure in that people can live so well and maintain their health. Being on treatment that’s working well is very effective.”

The treatment options for people living with HIV include tablets and injectables drugs.

At St James’s Hospital, some patients receive an injection every eight weeks, but this treatment is not suitable for all types of HIV or for all types of patients. Others take a tablet once a day.

“But there are people for whom taking the medication every day for whatever reason can be very triggering and very traumatic. The injectables help with that,” Prof Lyons explained.

“There is a newer agent called lenacapavir, which is an injectable that can be taken every six months. We don’t have that in Ireland, but I think that will be a game-changer moving forward.

“In the beginning, we had very little to offer people. The big breakthrough in medication came with the advent of the protease inhibitors in the middle of the 1990s and then the concept of combination treatment.” Antiretroviral therapy works by stopping the virus from reproducing and can reduce the viral load to undetectable levels. This means the immune system stays strong, and if it has been damaged, can allow it to recover.  As Prof Lyons outlined, the life expectancy for many people with HIV is similar to that of the general population due to treatment advances. In addition, people with an undetectable viral load cannot pass HIV to sexual partners.