“53% of clients had never taken an HIV test before“ - interview with Lella Cosmaro about the pilot campaign on HIV self-testing in Italy

HIV self-testing is an important tool for people and populations who otherwise would not access services due to various reasons, including stigma and discrimination. Effect of measures implemented in the beginning of the COVID-19 Pandemic only highlighted the importance of this tool as well as the need for virtual interventions. Global AIDS Strategy 2021-2026 confirmed that HIV self-testing should be part of the diverse testing strategies implemented by countries. Still many countries in Europe and Central Asia do not recognize HIV self-testing as important part of their national HIV response.

We asked Lella Cosmaro from Fondazione LILA Milano to tell us about the campaign on promotion of HIV self-testing in Italy, country where self-tests are available since 2016. The pilot campaign is part of the project “Community Led and Based HIV Services - Key to Ending the HIV Epidemic in Europe and Central Asia” implemented by AIDS Action Europe together with COBATEST Network and LILA Milano.

Lella, could you please tell us where the idea of the campaign came from?

LILA Milano wanted to spread the news about the availability of self-tests in Italy; in fact, especially during the first months of the COVID pandemic, people were calling the helpline to ask where they could go to get an HIV test, because it was impossible to access healthcare facilities and even community testing services. These people did not know about the availability of self-test kits in pharmacies and it was considered extremely important to inform them about this option. Thanks to the funding received by Gilead Grants for the project “Community Led and Based HIV Services – Key to Ending the HIV Epidemic in Europe and Central Asia", in partnership with AIDS Action Europe and the COBATEST network, LILA Milano was able to implement a pilot program on self-testing. 

Could you tell us more about the campaign?

As a first step, the campaign has the aim to promote self-testing through a widespread campaign and then to provide all interested people with a free self-test kit delivered to their home. The campaign is named JustLILA, because it echoes the Just Eat food delivery service, it has a colored logo. The process is designed to make the idea of testing easy and non-dramatic. It has become very popular on social media and now many more people know about this testing option.

The campaign was launched at the end of May 2022 and the program will last until the end of June 2023. LILA Milano is already exploring how to continue promoting the use of self-tests.

Could you tell us more about the situation in Italy regarding self-tests and why there was a need for this campaign?

In Italy self-tests have been available in pharmacies since December 2016. The Italian community was not involved in the launch of this new testing option – as a matter of fact, its sudden introduction came as an unexpected surprise.

However, after a few articles and news in the media around World AIDS Day 2016, no promotional activities were put in place and therefore few people are aware of this opportunity. Such an opportunity definitely needs to be known by all those who need to test. As already mentioned, when the COVID pandemic started, community testing was interrupted during lockdowns and hospitals were not accessible because of overcrowding and other emergencies. Self-test kits would have been an important alternative for many people in need to learn their HIV status, but many did not know they were available.

Could you describe the process of ordering the self-test?

It is quite an easy process. When people learn about the JustLILA service, they are invited to access the dedicated website. On the website they can find some initial information about self-testing and the JustLILA service, as well as the link to order a self-test kit. Before submitting the order, they are invited to fill in a questionnaire, which allows us to collect anonymous demographic and behavioral data on those interested in this program, so that we can have information on who mostly needs this service. Once clients have completed the questionnaire, they can access the part of the order, which is kept totally separate in the system to comply with privacy regulations. In this step, people need to give their name and address to allow for the delivery of the kits. They are also requested to submit their email address and are asked permission to send a follow-up questionnaire 15 days after the kit is delivered. Through the replies to the follow-up questionnaire, we can receive information about the test results, self-test kits’ ease of use, service acceptability, willingness to rely on self-testing again, etc.

Last, but not least, if clients wish to receive support while performing the self-test, they can easily book it on the website in the most suitable date/time, either through a phone call or a Zoom connection. One of the LILA testing team counsellors will provide them a phone number or Zoom connection for the set appointment and offer psychological and practical remote assistance during the performance of the test.

How the campaign is accepted and have you noticed any interesting trends among those who order the tests?

The campaign is definitely well accepted, especially by young people (as of today, Oct 7, 62% of the 1.076 people who decided to use the service and to fill in the initial questionnaire are between 20 and 29 years old. The service is surprisingly mostly accessed by female clients (52% females, 45% males, followed by non-binary and trans people); it is accessed mostly through Instagram (64% of people learnt about JustLILA from Instagram, 24% from friends and other acquaintances, the rest from other social media and websites). Very interesting data refers to the testing history: 53% of clients had never taken an HIV test before, and 26% had tested more than one year ago. All of them had risky sexual behaviors and want to learn/check their HIV status. PrEP has not yet become a popular prevention option in Italy: 33% of clients do not know what PrEP is and only 1,7% are taking it.

Out of the 1.076 people who filled in the initial questionnaire, 928 ordered their kit. This means that probably 14% of them did not feel “safe” in completing the order form, fearing that their data would somehow be connected with a possible HIV infection despite all assurances given about privacy protection. 

Could you share with us some first lessons learned from the campaign?

The first lesson learned relates to the previous data and fear of stigma: stigma is still present and represents one of the biggest barriers to testing, even to self-testing. It is important to witness the interest of women in self-testing: they are almost always underrepresented in all HIV related data.

The follow-up questionnaires, which so far have been completed by 196 clients, show a very high degree of acceptability of self-testing: 100% of clients would use it again; 83% declared to prefer self-testing rather than testing at healthcare facilities (9.3%) and community settings (7.2%). Ease of use of the self-test kit was evaluated as excellent (91%) or good (8%). The JustLILA delivery service was evaluated excellent by 93% and good by 6%. In the future, people would like to receive the kits mostly through a delivery system (84%), but also by purchasing them at vending machines or in pharmacies, or collecting them at community sites.

The test results of all those who answered the follow-up questionnaire were as follows: 193 negative, 2 undetermined and 1 reactive.

Only 15 people booked the remote support service and only 7 of them attended the appointment that was fixed for them. All their tests had a negative result. In the follow-up questionnaire, 93% of clients declared that the procedure seemed easy and they did not need assistance; 7% relied on the support given by a close person.

What are the next steps after the campaign is finished?

 LILA Milano will seek additional funding to continue with the self-testing campaign and delivery service; of course it would not be possible to maintain the service without financial support because both the kits and the mailing costs are high.

Also, it is important to advocate for a decrease in price of self-test kits - not only at local/national level but also at European and global level. Many people would buy them if they did not cost as much (presently, the average cost of the kits in Italian pharmacies is between 20 and 30 € per kit). If we obtain lower prices, people would more easily access self-testing even in the absence of a dedicated service offered by the community.

This project has been made possible with the provision of a financial grant from Gilead Sciences Europe Ltd.