In anticipation for the upcoming Digital Wellbeing Sprint, I had the pleasure of interviewing Sami Tuunainen from Hivpoint, The Finnish HIV Foundation. Hivpoint is a non-profit organisation founded in 1986 that promotes health, wellbeing and equality for people affected by HIV. They focus on people living with HIV, their families and loved ones and any other people that are concerned or have questions about HIV. Hivpoint is joining Digital Wellbeing Sprint for the first time and we, the Sprint crew wanted to discuss their motivation for joining and expectations as well as get to know more about the organisation.
Sami’s story with Hivpoint started in the 90s when he started working as a volunteer, answering the helpline and opening the door for people who came for testing. He followed a different path after that but came back years later and now he has been serving as project coordinator within the organization since 2014. Under his coordination Hivpoint developed the HIV rapid testing, weekly HIV Testing Service, the mobile testing unit for different events, parks and most recently the full low threshold STI (Sexually Transmitted Infections) testing for gay and bisexual men. They recently started a new project and hope the Sprint will help them find the best solutions for this challenge.
HIV still carries stigma
According to Sami there is still lack of information about HIV, even after all these years since HIV was first diagnosed. The lack of information is probably related to the stigma surrounding HIV. Many people still don’t know that HIV is a chronic illness and when well treated, an HIV positive person can live a normal life without the worry of passing on the infection. Hivpoint is doing diligent work to raise awareness and they focus a lot on their target groups, the people who are the most vulnerable to contracting HIV. Sami believes there are still a lot of misconceptions and old information in peoples’ minds, even though many things have changed in the last decades.
There is a lot of information available about HIV on how you can or cannot get it and what kind of illness it is, but still, there is a lot of misconceptions, even within the target groups.
He also believes that the stigma is related to the fact that HIV is a sexually transmitted infection. It also contributes to the stigma that vulnerable groups include gay and bisexual men and that people don’t have the newest information about what kind of illness HIV is nowadays.
The history of HIV still affects perceptions today
It may be easy for some of us to remember how more than 20 years ago HIV was all over the headlines and the illness itself was like a big trauma. People were scared and the sick were heavily stigmatized because of the lack of information and misinformation. In recent years however the discussions about the virus have almost completely disappeared. Sami pointed out jokingly that probably one of the reasons why people don’t talk about the virus anymore is since “HIV is probably not in fashion anymore”, but on a more serious note he stated that one of the reasons is that these days good treatment is available and it’s not such a big issue anymore.
But when it comes to someone’s mind, they always remember what was happening and how the situation was 20 years ago. I think that still, the biggest misconceptions are related to what activities carry the risk for HIV. Many people are still scared and wonder if they can be in the same room with an HIV positive person, if they can kiss? We are still getting questions from people if they can get it from the toilet seat or someone else’s toothbrush or even from mosquitoes, even though we’ve known from the beginning that none of these things have any risk for HIV.
Major breakthroughs in HIV treatment in recent years, but no cure yet
One of the biggest changes came about 10 years ago when HIV treatment became so effective that an HIV positive person on proper treatment could not pass on the virus to anyone else, even during unprotected sex. This was the biggest change in HIV history as Sami explained.
“That basically meant that an HIV positive person who was on effective treatment didn’t have to be afraid of infecting anyone, not even their sex partners. However, most of the new infections in western countries, also in Finland come from people who don’t know that they have HIV. That is why it is very important to have these tests and adjusting services so that people who might be at risk for HIV can get tested easily.”
Sami continues by explaining that the most effective way to prevent new infections is to be tested and diagnosed early on so you can get the treatment, in that way stopping the spread. “After the treatment starts to work, a person can’t infect anyone. And this is something that we still need to spread awareness about.“
Currently there is also preventive treatment called PrEP (pre-exposure prophylaxis), that is essentially a medicine that can be taken as an HIV prevention method prior to exposure to the virus. It is used by HIV negative people to prevent infection and is recommended for people with the highest HIV risk. Even though finding a cure might not be very close, according to Sami a new injectable treatment was recently made available. The treatment is injected once a month or every other month. People living with HIV will have this option for treatment, which is already a positive change compared to the treatment of taking a pill every day.
Hivpoint’s rapid shift towards digitalization
Our discussion shifted to the very current topic of digitalization and how Hivpoint has adjusted to the increasing demand for digitalization. Sami explained that as for many other organizations, the shift happened very fast during the pandemic. Especially their online chat service on their webpage has started to be in big demand although it was introduced a few years earlier. As for their work practices, they are working from home but even the in-house meetings are now also on Teams even when they are at the office, so that they can keep the safe distance. Following the restrictions brought by the Covid pandemic they are also doing their trainings and webinars online, as well as training the volunteers for example.
We discussed some positive aspects brought by the pandemic, and Sami believes that in some situations meetings and trainings have been more effective virtually, money can be saved as you don’t need to travel, pay for hotel rooms and especially you don’t have to use your time for travelling. “Basically, you can be more effective in your work and do lots of things” Sami says. However the cons are related especially to socializing and the ideation process, as Sami puts it “when you are socializing with people, I feel that there is some kind of brainstorming and it’s overall a better environment for new ideas.” Ideally, we should be able to do a hybrid option where you have the possibility to combine the two working practices, Sami concludes.
Talking about the shift into providing digital services, Hivpoint is planning to develop a secure video conference or video counselling system and chat system. Following the drastic decrease of funding they have experienced in 2021, they had to close offices and sites and even though they have clients all over Finland, they currently only have an office in Helsinki. This is the biggest reason Sami thinks it’s important to offer secure online counselling, trainings, and meetings.
Hivpoint’s challenge at the Digital Wellbeing Sprint 2021
As the discussion turned toward Hivpoint’s challenge at the Digital Wellbeing Sprint, Sami explained that he is coordinating a new 3-year project to offer a new kind of service related to sexually transmitted infections. He hopes that the students will give eye opening suggestions and come up with out of the box ideas at the Sprint, especially because they might not be so familiar with the subject, and are more likely to come up with unbiased solutions.
Our challenge is about sexual health and how we can increase STI contact tracing. The main challenge is this: if someone gets an STI, they have to inform their partners that they need to get tested. The way it’s done currently is by phone call, text message or email and the doctor or nurse can do it from the place where you get treated or from where you got tested. But we know that there is also stigma and shame around STIs. So basically, we are looking for ideas on how to increase the contact tracing as an anonymous service. A digital service through which you can inform your partners to get tested anonymously – Sami explains.
Critical aspects of the challenge include security, safety, reliability and that it can’t be abused in a sense of sending false information. Hivpoint has already conducted their own research but hope students will roll up their sleeves and find interesting solutions on how they can conquer this delicate challenge. One critical aspect about STIs is that they quite often do not have any symptoms, they’re asymptomatic. Basically, if you don’t get the information that you might have it, or that there has been a risk, you probably won’t get tested – making this challenge so important as a prevention of new infections.
I would like to end by thanking Sami for the enthusiastic discussion and informative content I hope many will find useful. The Sprint crew and Hivpoint are excited to see the solutions proposed by the students at the Digital Wellbeing Sprint starting on 21st of May 2021.
Hivpoint promotes health, wellbeing and equality for those most affected by HIV. They work tirelessly to raise awareness about prevention of HIV infections and offer testing services, counselling and other support services related to HIV and sexual health. If you want to support Hivpoint, you can reach out on their webpage and find out more about how you can help (https://hivpoint.fi). Both donations and volunteers are especially needed and would help the organization tremendously.
This blog was written by Elena Howlader, facilitator in Digital Wellbeing Sprint 2021. Elena is currently studying Service Innovation and Design Masters degree in Laurea University of Applied Science and has a background in visual design.