When American HIV/AIDS activist and talent agent Josh Robbins was diagnosed as HIV positive in 2012, he didn’t immediately start treatment. Instead, he and his physician decided he would practice taking a multivitamin at the same time each day. “I didn’t know if I would be able to commit to my treatment schedule,” he said. “It was important that when I did start treatment, I knew that I could be adherent.”
Every doctor knows that the fanciest medicine in the world won’t work if a patient doesn’t take it. In the case of HIV/AIDS, treatment is essential both to slow the virus’ spread and to reduce HIV/AIDS symptoms. There are dozens of different medications available for HIV/AIDS — and many of them require patients to stick to an unforgiving schedule.
“It’s important that when you start treatment, you’re all in,” said Robbins, “100 percent.” If a patient takes a medication too late, the virus may affect healthy cells, and over time, could give way to drug resistance.
Before 2012, Robbins barely went to the doctor. But after his diagnosis, he was hit with a new reality. He described taking the vitamin as “training” for his treatment, because the lifestyle changes required don’t necessarily come quickly, or naturally.
There are lots of reasons why people who have been diagnosed with HIV/AIDS might struggle with medication adherence. Some face difficult side effects, such as nausea, anemia, and depression. Others, particularly in the developing world, may face shortages in the medication supply. Patients addicted to drugs and alcohol, particularly stimulants like cocaine and methamphetamine, tend to miss more doses. And religious or cultural beliefs (for instance, the belief that praying may provide a cure) may keep some away from their pills.
But beyond these complex challenges is a much more basic one: trouble creating and sticking to a strict schedule.
Since HIV/AIDS medications entered the public domain in the 1990s, they have become significantly more user-friendly. While regimens used to include taking dozens of precisely timed pills a day, there are now one-pill-a-day options. New innovations, such as long-acting injections (now under clinical testing) may bring dosage requirements down further.
For Robbins, adherence has involved thinking about his individual lifestyle and figuring out how he’ll best be able to remember taking his medication. For him, it’s harder to stick to a nighttime routine (bed time, for instance, might be much later than usual over weekends), but the morning works. He mentally links taking medication with morning tasks like brushing his teeth.
Things like pill boxes, apps, and alarms can help patients remember, but adherence can still be an ongoing challenge. Forward thinking is required to organize refills and to plan for schedule disruptions like holidays. Also, when an HIV/AIDS patient doesn’t feel sick in the moment, he or she might lose motivation to take medicine. “I feel fine,” Robbins said. “So why do I have to take these pills?”
These practical concerns exist around the world. A recent anthropological study from Brown University on HIV medication adherence in Ethiopia found that many patients found the required punctuality overwhelming. Some took to it like a “full-time job,” while others felt dismayed at the idea of routine.
Sometimes, the reasons for forgetting to take medication are even simpler. For instance, many HIV-positive adults in Malawi don’t have access to a timepiece. “It’s very difficult for them to be very specific with the time,” said David Odali, the director of the Umunthu Foundation, which provides education to HIV-positive individuals and their families. “To have a watch or a clock in a poor country like Malawi is not common. You find so many houses don’t have clocks.” The Brown University study in Ethiopia made a note along similar lines: “Timepieces are not easily accessible; a majority of interviewees did not wear a wristwatch or carry other accessories that indicate clock time (such as cellular phones).” Odali estimates that people do tend to take their medications within a fairly consistent window of time — for instance, “early morning”. While some clinics and pharmacies around the world address this problem by giving out alarm clocks to patients, in Odali’s work it’s impossible to know how precise the routines are.
Odali agrees with Robbin’s conceptualization of adherence as a lifestyle rather than an exact time. Part of his job is to promote adherence through people’s social lives. When a person is first diagnosed, they’re asked to bring someone they trust to appointments. The two are educated on HIV together, and both are responsible for adherence. This effort is bolstered by volunteers, who regularly visit people living with HIV and remind them that they have the right to be healthy — and that being healthy means taking meds on time.
The potential power of social networks points to, on the flip side, the deep impact of stigma. If someone can’t disclose their status to anyone — perhaps it’s uncomfortable, or unsafe — they lose one of the most important resources in managing HIV/AIDS.
A 2012 study from the University of Montreal found that in Burkina Faso, NGOs sometimes excluded people from treatment if they lived alone. Not having someone around to help you remember to take your medications is associated with low adherence.
“We still have a long way to go,” said Odali. But helping people stick to a schedule can help address the HIV/AIDS epidemic, limiting the virus’ spread, and help people live the healthiest lives possible.
