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A Pilot Intervention: Mobile Health App for Youth Living With HIV

Parya Saberi

Although overall HIV rates are no longer escalating at the speed they were several decades ago, the HIV infection rate has increased sharply among young men under age 29, and particularly African American young men, who have sex with men, noted Parya Saberi, assistant professor at the Center for AIDS Prevention Studies at the University of California at San Francisco.

Youth living with HIV face several challenges including adhering to antiretroviral therapy (ART) dosing, and scheduling and tracking their viral load. Saberi and her colleagues conducted focus groups with youth living with HIV in the San Francisco Bay Area to learn how a mobile app could help them manage their health. Participants reported barriers to keeping up with their ART such as getting prescription refills on time. To address these needs, Saberi and her team developed a mobile app called WYZ (pronounced like 'wise’) that is currently in the testing stages.

We spoke with Saberi to learn more about WYZ’s development.

NCFY: Why did you and your colleagues develop a mobile health app for youth living with HIV?

Saberi: If you look at the data for new infections within the US, the main group of the population that's mostly affected is now youth, so individuals under the age of 29. For a lot of other groups, the rate of new infections has more or less plateaued or has become much lower whereas for this population, particularly for male youth who have sex with other men, and especially African American youth who have sex with other men, this rate has tremendously increased. This group is really one of those populations where there's a lot of disparities in care, and so really important to address.

There was a recent article…where the authors looked at all the papers that had been published [about] youth living with HIV and essentially found that about only 40 to 60 percent of this population…was actually aware of their HIV status to begin with, and among those, 62 percent weren't linking to care within 12 months, and only 54 percent of those had an undetectable viral load, so their HIV virus in their blood was low enough that it was not detected by the test, meaning that the medications are working. So if you look at the entire population of youth living with HIV in the U.S., only 6 percent, maybe even fewer than 6 percent, were actually having this successful virologic outcome, meaning that their viral load was suppressed from being on medication. So that's a really, really low number. Now these data have evolved over the past few years and there are better outcomes, but still this is a huge area of disparities where a real solution needs to be looked at.

NCFY: What most surprised you about young people's feedback about the app?

Saberi: The main thing probably that stood out for me for the population we were interviewing and doing focus groups with was what an important role HIV stigma still plays in the lives of this population.  And this is really surprising for me because you think with the social networks out there and…their whole life being online, that there would be less of a risk of stigma and especially for this age range. But it was so surprising to me that anonymity within the app and being able to have control over what people saw and learned about them through the app was probably one of the most important issues that was brought up. So like having the pass code or thumbprint capability for the app, a way of quickly being able to close the app, or having the app be very neutral-looking so that someone who may be looking through your phone would not know what the app is about. Being able to have an alias or some sort of avatar and also, there were a lot of discussions about having a moderator, which we do for the app, so that if someone were to be posting anything negative [in the community section] they would be reprimanded or taken out of the app.

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