RFSL (the Swedish National Federation for LGBTQ+ Rights) commissioned Sifo (the Swedish Institute for Public Opinion Research) to conduct a study to determine the level of awareness among the Swedish public that HIV is not sexually transmitted when the viral load is undetectable.
Note: What is an ‘undetectable viral load’?
When a person with HIV takes effective antiretroviral therapy (ART) daily, the medicines block the virus from multiplying. Over time, the amount of virus in the blood drops to such a low level that modern tests can no longer detect it. In this state, the international U=U (Undetectable = Untransmittable) principle applies: the virus cannot be transmitted to another person through sexual contact. This is a scientifically proven fact.
Research findings: A critical knowledge gap
In September 2020, a representative sample of the population (1,000 people) was asked the following question: ‘Today, medical treatment is offered to all people living with HIV in Sweden. In your opinion, how do these medicines affect the risk of HIV transmission through sexual contact?’
The data shows an extremely low level of awareness: only 14% of respondents know that the risk of HIV transmission disappears completely. This means that 86% of the Swedish population do not have up-to-date information.
Distribution of responses:
- 14%: The risk disappears completely (Correct answer).
- 28%: The risk decreases slightly.
- 23%: The risk remains the same.
- 5%: The risk increases (Misconception about the harm of treatment).
- 31%: Difficult to answer/Don’t know.
Distribution of knowledge among the population
The study revealed differences in awareness depending on gender socialisation and age:
- Gender aspect: People who identify as women (18% correct answers) are better informed than those who identify as men (10%). The most informed group is young women aged 18–29 (25% correct answers).
- Age: Young people know more than older generations. The lowest level of knowledge was recorded among men aged 65–79 (only 5% correct answers).
- Geography: Awareness is higher in large urban areas and in southern Sweden.
Comparison with past data: An alarming trend
The Swedish Public Health Agency (Folkhälsomyndigheten) has been tracking this data since 1987. A comparison with data from 2016 revealed a negative trend:
- Increased uncertainty: The proportion of those who ‘do not know’ how medicines work rose to 31% (in previous years it was around a quarter).
- Increased misinformation: In 2016, 3% believed that the risk of transmission increases during treatment. In 2020, this figure had risen to 5%.
- The gap between science and public knowledge: Since 2019, it has been officially recognised that there is no risk, yet public awareness has fallen to 14% (in 2016, when the risk was described as ‘minimal’, 20% answered correctly).
Causes of the knowledge crisis: Government policy
Awareness of HIV remains low, yet government policy has led to a lack of information. Until 2018, the Public Health Agency, regional authorities and voluntary organisations received targeted grants for communication campaigns.
In 2018, the government completely abolished these allocations. Since then, no funds have been allocated for campaigns aimed at the general public, which, according to RFSL, has directly led to a deterioration in the situation.
Discussion and conclusions
Ignorance breeds stigma. Stigma and fear of HIV can only be reduced if people know that almost all people living with HIV in Sweden are receiving effective treatment and cannot transmit the virus through sexual contact.
Without continuous information, knowledge deteriorates over time. RFSL insists on the need for:
- The reinstatement of targeted grants for regions and NGOs.
- Nationwide campaigns explaining the U=U principle.
Public awareness is invaluable for improving the mental health and quality of life of people living with HIV.
