Sticking to pill regimens can be tough for anybody, but for HIV patients it’s especially important to adhere to the treatment schedule recommended by their doctors.
Keith Horvath, a U. Minnesota researcher in the School of Public Health, is looking at how social media can help patients maintain the rigorous regimen — following the efforts of drug companies and medical providers.
Pill reminders sent to a patient’s mobile device or inbox are already a common strategy to encourage medication adherence, but psycho-social factors like depression or drug use can put a damper on patients’ taking their medication, Horvath said.
Last spring, Horvath launched a pilot study to find how online support networks might motivate HIV patients to follow their medication regimens. He built a “Facebook-like” website, which allowed participants to network with other HIV-infected individuals.
The user feedback has been positive enough that Horvath is preparing to submit a grant proposal next semester to the National Institutes of Health for a larger study.
Medication adherence is critical for HIV patients because missing a dose can provide an opportunity for the virus to replicate. If this happens while low levels of an HIV drug are in the blood, the virus can mutate to become drug-resistant.
Ten years ago, a typical medication load included about 30 to 40 pills daily. That’s down to about three now, said Terri Foley, director of communications for the Minnesota AIDS Project.
The more than 6,000 HIV-positive Minnesotans have an array of services available to help them stay true to their medication schedule.
But Tim Marburger, director of fundraising and special events at The Aliveness Project — a community center in south Minneapolis that provides services to people with HIV —said that about 70 percent of the 1,600 people that the center serves are below the federal poverty line of $10,830 annual individual income.
Many of them use pay-as-you-go cellphones — not smartphones that can send alerts — and many don’t have regular Internet access.
Alternatively, one free, high-tech option for HIV-patients sponsored by the Minnesota Department of Human Services is a pill box with a built-in alarm.
Another DHS support program for HIV patients struggling to stay in control, Medication Therapy Management Services, sets up counseling at the pharmacy.
Darin Rowles, director of case management at the Minnesota AIDS Project, said all of its programs use email to communicate with clients plus a fraction that use text messaging. But the best way to help patients is to meet in person.
Online interaction, even over chat, slows down the conversation, he said.
“I don’t see social networking as being realistic for [the clients] because of the boundary concerns,” Rowles said. “It’s much more about relationship building — face to face interaction.”
Positive Link, a program within the Minnesota AIDS Project for HIV-positive gay and bisexual men, has a “secret” Facebook page that roughly 50 of its 600 participants feel comfortable using, said Nick Schrott, a health educator with the program who is also HIV-positive.
At least half of the 600 have Facebook but don’t use the Positive Link page, he said.
Their main concern is privacy — making sure HIV-related alerts that pop up on their wall won’t be viewed by the wrong eyes, Schrott said. Even though the page is unsearchable and its announcements can’t be viewed by non-members, people don’t feel comfortable taking the risk.
A site like Horvath’s that isn’t as big and as public but has the same options as Facebook might work better, Schrott said.
Horvath said he realized the population with access to social media technology is a subset of those infected. The web site he created, which allows private posting and networking, appeals to a more educated, higher income group.
It’s only one part of the solution for medication adherence, and people with privacy concerns might choose not to use it, he said.
“That’s fair and that’s their choice,” he said.