Social media | Tech for good

HIV and digital: how technology accelerates activism

Once in a while, something comes along and makes an undeniable impact on a group of people or cause...

By Amy Johnson · February 18, 2021

It’s A Sin is the latest phenomenon to do just that for HIV activism. The streaming figures alone are jaw-dropping and there is power in those numbers; broadcasting this story to the masses is helping to humanise an often-judged group of vulnerable people.

More remarkable, still, are the new figures suggesting that It’s A Sin has helped to increase the number of people getting tested for HIV by 4x. Powerful as it may be, TV isn’t the only medium that’s been revolutionising HIV activism and busting stigma. We may be biased, but the role of digital can’t be overstated.

Digital has facilitated a much-needed online community amongst people living with HIV. It’s enabled wide-scale accessibility of vital health knowledge and even distributed life-changing medicine. On a daily basis tech empowers, connects, mobilises and revolutionises.

The course of HIV history until now would look very different without it.

The power of one website

In 2015, after an HIV positive test result that took him by surprise Greg Owen posted his diagnosis on Facebook. In his post he also mentioned PrEP, the preventative drug for HIV. This brave but simple gesture snowballed into a journey that changed thousands of lives. 

Overnight the post blew up and Greg found himself inundated with messages and queries about HIV and PrEP.

Acting as the port-of-call for anxious individuals searching for vital health information was not sustainable for one human being. To provide a permanent signpost, Greg founded iwantPrEPnow.co.uk alongside his friend Alex Craddock.

screenshot of the original i want prep now website
The original iwantprepnow.co.uk website

Their digital journey is an inspiring one; they created a game-changing digital tool with zero budget and zero web experience. Their build process actually involved removing the eye icons from an optician website template – and running with it. 

We launched a website which was clunky and ugly. But it did what it needed to do.”

Their modest new site provided a way for people to buy genuine PrEP at a lower cost than the private subscription route. 

In the UK, iwantPrEPnow.co.uk’s launch coincided with a massive increase in people taking the drug. When HIV rates among gay and bisexual men fell drastically in 2015 for the first time in recent years, doctors went on record to say that they thought PrEP insurgence was the main reason.

In 2019, the HIV rates amongst gay and bisexual men were

47% lower than they were in 2014.

It’s safe to say Greg and Alex’s website, now updated and operated by our fantastic charity partner Terrence Higgins Trust, changed lives. Their lack of digital know-how back in 2015 could have held them back. But as Greg so eloquently puts it, if you’ve got a game-changing digital idea, “Don’t be afraid to put your baby into the world. Babies are often ugly but they are necessitated by need. Be brave. Launch it!”

Greg on stage
Greg and Matt haworth on stage

“I found my home.”

Social media, now used by 53.6% of people on the globe, has one major superpower. It provides a lifeline of human connection for minority groups – human connection that they might not find anywhere else. 

Where people living with HIV were once ostracised, social media has enabled them to band together and share experiences. Twitter has created a space for people living with HIV. A “thriving community” as Greg calls it. “I found my home. It’s out there. You can help build it.

Social networks ensure that anyone can keep up to date with the latest HIV news by watching Susan Cole-Haley and Matthew Hodson’s digital show #aidsmapCHAT on Twitter and Facebook. Their guests are diverse and inspiring; researchers, actors, doctors, and activists telling their stories and discussing HIV-related topics.

The connectivity of social media is especially crucial in our current times, where face-to-face meet-ups and events are non-existent. Digital makes sure that the community of people living with HIV has an unbreakable communal platform.

HIV and digital campaigning

Activists are still fighting an uphill battle to eliminate the HIV stigma that has permeated the public since homophobic fear-mongering of the 1980s. This stigma doesn’t just hurt those who are living with HIV, it can prevent undiagnosed people from getting tested.

Fear of judgement for even getting a test, and outdated ideas around what living with HIV means, delays vulnerable people from being diagnosed early and living a long and normal life.

But online, HIV charities like Terrence Higgins Trust are working tirelessly to reframe a virus often entrenched in fear (thank you tombstone advert of 1986). They do so with bold and informative campaigns such as Can’t Pass It On, which promotes the important U=U (Undetectable = Untransmittable) message: that people who are on effective treatment can’t pass the virus on.

poster from THT's can't pass it on campaign
poster from THT's can't pass it on campaign

“Digital marketing has been a really cost-effective way to share important messages around testing as well as stigma-busting campaigns” explains Will Howells, Head of Digital at THT. 

Digital is vital to meeting our strategic objectives across all areas of our work, including ending UK HIV transmissions by 2030.” 

Digital is about more than putting a message out there for the world to hear. It’s about ensuring internal processes and back-office functions work in a way that helps organisations like THT deliver life-changing test kits should, say, a pandemic hit.

When Covid came along, THT was fortunate enough to have systems and processes in place which meant they were ready to offer many of their vital services digitally.

Will explains just one of THT’s many digital services that are helping to reach the goal of zero transmissions: “Our flagship HIV self-testing programme continues to lower barriers to testing and over the last year we’ve added a tool to help people find free postal testing services in their area with a simple postcode search.”

As Greg says, “at the core of [digital], it’s communication. We need that to survive.” A lot of the time, the most impactful uses of digital aren’t the most technologically groundbreaking. It doesn’t always require virtual reality or artificial intelligence. Sometimes, simple peer-to-peer networks or internet searches make all the difference.

For example, some people still believe that you can’t get HIV if you’re a woman, or if you’re straight. Since It’s A Sin premiered, Google searches of ‘can women get AIDS’ have gone up 2150%. Campaigns like Invisible No Longer are present in the results to amplify the female voices often sidelined throughout HIV’s history.

Over on TikTok, the new campaign-vehicle on the block, HIV+ users are posting their journeys, broadcasting their normal lives and dispelling myths about the virus. Charities like the Elton John AIDS Foundation are using the platform to raise vital funds and post informative content and campaigns.

elton john aids foundation on tiktok promoting HIV testing
tiktok user jah love telling his HIV story
tiktok explaining the undetectable untransmissable message

Letting digital do the talking

HIV medicine has advanced so much since the 80s, but people’s basic HIV knowledge has not advanced at the same rate.

As a person living with HIV, having to constantly explain different aspects of the disease, the science and its effect on your life, can be draining and repetitive. That’s why in 2019, in partnership with the National Aids Trust we created Looped in; an online tool that allows people to create tailored informational resources to send out to whoever needs it.

The tool offers a range of trusted content about HIV tailored to different audiences: from family to sexual partners to medical professionals. Together, we wanted to empower people living with HIV to share accurate and simple information their way and technology was the key.

Beyond a screen, we are all responsible

It’s worth noting that what digital can offer the world of HIV prevention and eventually, eradication, is not accessible to all. Of the world’s population, 59.5% are internet users. These figures grow year on year but digital exclusion is still a problem. 

However, these stories of tech for good, and the conversations It’s a Sin has sparked, highlight the vast distance we’ve travelled in our acceptance and understanding of HIV. The stark reminder of the era that Ritchie, Jill and Colin brought into our homes, is one that gradually disintegrates as both humans and technology come together to continue to tell the truth about HIV.