Ask Us Europe is a new study from the SHARE collaborative to explore if and how new treatment options are being discussed with people living with HIV by their healthcare providers. It is a co-produced study which we developed together with members of the HIV community across 17 European countries.
Why is the study important?
New simpler treatments for HIV have been developed such as tablets containing two drugs instead of three and longer-acting treatments that are not taken every day and are given as injections instead of pills. Cabotegravir + rilpivirine (CAB+RPV LA-I) (also known as CAB RILPI or Vocabria and Rekambys) is the first long-acting injectable HIV medication. Taking it means getting an injection into each buttock muscle every 2 months given by an healthcare provider at a clinic. It is available in many European countries such as Austria, Belgium, Czech Republic, Denmark, Finland, France, Germany, Ireland, Italy, Luxembourg, Netherlands, Norway, Portugal, Poland, Spain, Sweden, Switzerland and the United Kingdom.
Studies that were done before this long-acting treatment was developed showed that many people living with HIV were very interested in long-acting treatment options. However, not many people are taking this treatment in Europe which does not match these interest studies. This suggests an unexplained gap between what people living with HIV indicated they wanted and what is happening in practice. We would like to understand this gap better.
We want to understand, from the perspective of people living with HIV, if and how new treatment options (including newer pills or injectables) have been discussed by HIV healthcare providers with people living with HIV. We would also like to understand if they are being offered equally to all groups of people such as women, older and younger people, transgender and non-binary people, people from ethnically diverse backgrounds and people not born in Europe.
We will use the results from this study to improve understanding on how new treatments such as long-acting injections are discussed by HIV healthcare providers and people living with HIV during their appointments. We will also gain understanding on whether new options are being offered equally for all groups of people. This will help us explore ways that people living with HIV may be better supported and help us make recommendations to healthcare workers and policymakers for how new HIV treatments are offered across Europe.
This study has been developed together with people living with HIV across 17 countries. The study has two parts: 1) an online anonymous survey for anyone in the European countries where injectables are available for use. To ensure we include the perspectives of as many people as possible, including those not born in Europe, the survey will be available in 18 languages (English, German, French, Polish, Italian, Spanish, Swedish, Finnish, Czech, Dutch, Norwegian, Danish, Portuguese, Arabic, Russian, Turkish, Ukrainian, Swahili).
Next, we will do online interviews with people who took part in the survey to understand the topic in more depth.
The Steering Group of people living with HIV will then help us to develop a list of the top 10 most important factors that healthcare providers and policy makers should consider to best deliver new HIV treatments in Europe.
The Principal Investigator for the study is Prof Chloe Orkin. The other study team members are Dr Megan Devonald, Dr Chloe Pasin, Ms Rebecca Mbewe and Ms Nishat Halim.
SHARE has a paid community advisory board of people living with HIV who provide strategic oversight and guidance on all our studies.
In addition, the Ask Us Europe study was co-produced by a Steering Group of people with lived experience of HIV, peer mentors, EU-based community stakeholders and HIV activists across 17 countries in Europe, who provide advice and guidance to the study team. The Steering Group is chaired by Angelina Namiba.
This study is being funded by ViiV Healthcare.
If you would like to take part in the survey (and you are currently taking HIV treatment and living in a European country where CAB+RPV LA-I is available) please click HERE.
For any questions about the study, contact askusstudy@qmul.ac.uk. Follow our social media accounts for regular updates about the study.
