PrEP is approved in Scotland
On 10th April Scotland became the first of the UK nations to approve the provision of PrEP by the NHS to prevent HIV.
The Scottish Medicines Consortium (SMC) announced that following their rigorous process the drug Truvada has been deemed an effective treatment to prevent the transmission of HIV and will be made available on the NHS in Scotland.
HIV Scotland has spent years campaigning for PrEP to be available as an extra part of a comprehensive prevention package. In 2016 HIV Scotland published a PrEP good practice guide, and administered Scotland’s expert group which produced prescribing criteria, cost assessments, and mapped information and training needs of workers and the community.”
This outcome was only made possible by the involvement and collaboration of community members, service providers, researchers, and decision makers all coming together to learn and work in partnership. Hundreds of community members across Scotland got in touch with us, attending information events, contributing to consultations and decision making groups, appealing to clinics, and spreading the word.
This as an opportunity to significantly reduce the number of new HIV infections in Scotland. This shows what progress can be made when professionals and the community are able to join together to learn from each other and find solutions.
HIV Scotland will continue to work to ensure the effective roll out of PrEP, and that knowledge and understanding of PrEP is increased in the public and professionals.
Health boards are currently working to finalise the roll out of PrEP in sexual health clinics. Each health board has their own policy on PrEP implementation, and will be making PrEP available in clinics by July 2017, though this may vary a bit across each NHS health board area. If you’re interested in taking PrEP or are unsure, check out the frequently asked questions here.
How we got here - The SMC process
In order for PrEP to have been made available on the NHS in Scotland it needed to be approved by the SMC.
In December, Gilead, the pharmaceutical company who manufactures Truvada, submitted an application to the SMC to determine whether it should be made available on the NHS. As part of the SMC process, they invite patient groups to make a submission on behalf of people already using or who would like to use the medication. The Patient Group Submission is an opportunity for people to provide insight into what it’s like to use the medication or what impact it would have on their life.
In February HIV Scotland, Waverley Care, the National AIDS Trust (NAT) and Terrence Higgins Trust Scotland submitted a Patient Group Submission capturing the experiences, comments and concerns from people living in Scotland about PrEP. We conducted an online survey and received hundreds of responses and, while the space in which to do so was limited, we have done our best to represent all views. You can read our submission here.
As a patient group, we were invited to attend the Scottish Medicines Consortium’s (SMC) committee meeting where they voted on whether to make PrEP available on the NHS. While the decision wasn’t announced, we were able to see how the decision about PrEP is made. Here is a summary of how the SMC make their decision.
The PrEP Short Life Working Group
In the years preceding PrEP being available on the NHS, HIV Scotland recognised that its availability could make a significant improvement to Scotland’s HIV response, and that people were already taking privately sourced PrEP in Scotland. HIV Scotland therefore lobbied for a Short Life Working Group (SLWG) to be formed to ensure community members, service providers, and decision makers were informed about and prepared for PrEP use that was already taking place in Scotland, and to make recommendations for its availability on the NHS.
The expert group administered by HIV Scotland and chaired by Dr Rak Nandwani included membership of from a range of specialists including public health leads, HIV and sexual health doctors, a community member, pharmacy, third sector, social researchers, drug procurement, and observers from the Scottish Government and the Scottish Medicines Consortium (SMC).
In November 2016 the SLWG published a report recommending PrEP for use in Scotland. This report was endorsed by the Executive Leads Network, who govern Scotland's Sexual Health and Blood Borne Virus Framework, and was used as evidence by the SMC as part of their assessment of PrEP.
You can read the full report below:
PrEP in Scotland Report [PDF - 965kB]
Talking about PrEP - community information events
HIV Scotland identified the need for accurate PrEP information to be shared with the community, and wanted to increase opportunity for community members to share their concerns, and suggestions with us. HIV Scotland worked with NHS and third sector service providers to hold events in 2016 in Aberdeen, Dundee, Edinburgh, and Glasgow.
In addition to our four face-to-face events we held an online Twitter discussion. People were able to engage with experts in discussion and ask questions or concerns they might have about PrEP. We captured the discussion in a Twitter Moment.
HIV Scotland also recognised that PrEP is having a significant impact on how people engage with HIV, and sexual health. If you consider that almost everyone knows fundamentally what a condom is and how it works, but few people as yet understand the basics of PrEP. This has implications not only for the people who use PrEP, but also for their sexual partners, and other people who may be unsure what PrEP is and how it works. We therefore partnered with the University of Glasgow and University of Edinburgh to develop very basic PrEP information resources, using HIV Literacy work developed by Dr Ingrid Young. We are reaching out to sexual health and health promotion services to make this information available to the people they support.
PrEP Good practice guide for Scotland
In March 2016 HIV Scotland published a PrEP good practice guide to raise awareness of PrEP and explore how it could benefit the HIV response in Scotland, and to encourage decision makers and service providers to make plans for PrEP. This information resource is endorsed by the Scottish PrEP expert panel (the Shortlife Working Group), as listed in their ‘PrEP in Scotland’ report.