Adherence: Going the Last Mile in PMTCT

Option B+ has transformed prevention of mother-to-child transmission (PMTCT). For one thing, more effective and less toxic new drugs make it possible to treat pregnant and breastfeeding women and thus prevent HIV transmission from the mother to the child. According to Option B+ guidelines, all HIV-positive pregnant or breastfeeding women are started on lifelong antiretroviral treatment (ART), regardless of their clinical stage or CD4 count. This means pregnant women can start taking the drug while they are still healthy. Finally, as so many governments support Option B+, enrolling expectant and lactating mothers in ART has been rolled out in several countries.

There is a clear timeline and clear guidance for PMTCT. First, a pregnant woman gets tested for HIV and initiates ART if found positive. Then, the newborn child is also tested for HIV; and the mother and child continue follow-up until the child is proven HIV-negative (or if proven positive, started on treatment).

But initiating a woman on ART is just the first step. Her continued treatment throughout pregnancy and breastfeeding is critical for the baby’s health. But the challenge for many women is adherence to treatment and retention in care throughout the PMTCT cascade, including the breastfeeding period, much less for the rest of their lives.

Though many women adhere to their ART during their pregnancy, they often drop out of treatment during the critical postpartum period, and many do not bring their newborn infants to the health facilities for testing. For pregnant women to adhere to ART throughout the PMTCT cascade, they need to clearly understand the benefits of taking the drug for themselves and for their children. Too often, women simply do not receive adequate, frequent counseling necessary to help them understand why HIV-exposed infants must continue to receive follow-up care until they are proven HIV-negative. Option B+ gives women a strong start for a healthy family, but insufficient psychosocial support makes them and their newborns vulnerable.

Unfortunately, there are many reasons why women don’t receive this vital support. High patient-to-nurse ratios, poor provider-patient communication, and lack of counseling training for medical personnel are chronic structural issues that result in overburdened providers and prevent women from receiving the necessary information.

Counseling is not the only problem. Another critical challenge for PMTCT—given that treatment requires monthly refills—is simply getting to the clinic. A walk to the clinic can take hours, and public transportation is costly, unreliable, and equally, time-consuming. Once there, the woman can then wait for hours again at understaffed, overbooked facilities.

Culture, too, can pose barriers. Some cultural norms require pregnant women to stay at home. Frequent trips to the hospital raise doubts among family, friends, and neighbors.  Stigma and misconceptions about HIV force women to come up with excuses for the visits or to stop visiting the hospital altogether, putting themselves and their newborns at serious risk.

Option B+ was a critical first step for pregnant women and their babies. But PMTCT success demands empathy or an understanding of what it takes to help a woman to fully adhere to treatment. Thorough counseling from a provider who also understands PMTCT is an important piece of the puzzle, but how can we guarantee that kind of counseling and adherence support?

The private sector—historically overlooked as a source of HIV services—may have an important role to play. Part 2 of this blog will discuss how the private sector can scale up PMTCT services to help women adhere to and retain in HIV treatment.

Written by Aida Berhan, Pia Kochhar and Stephanie Joyce