People may sometimes confuse trust with faith, which is understandable since they feel similar when you process them in daily life. For context, faith is a belief system and trust is an action. To a certain degree, we place a little bit of both in our HIV medications every time we take them. We trust that the medication is going to do what it is supposed to when we take it and have faith that it will keep us healthy.
Clinicians and healthcare providers play a big, but understated, role in whether people take their medications for HIV. They can influence if a person chooses to try a new HIV medication or intervention, like switching from an oral pill to an injectable medication. They will also guide how trust, once lost, is rebuilt, such as in the case of a treatment failure. Undetectable equals untransmittable—or U=U—is another area where we rely on medications to work. Trust is predicated on factors of logic, authenticity or believability and a willingness to act on those factors. For people taking or starting HIV meds, it’s the willingness to act that counts.
As HIV medications have evolved over the years, so has the way we look at them. What was once desperation for solutions to stay alive has now become varied, almost casual, and preferential choices. When AZT first came on the market, people took it despite all the harmful side effects and its visible failure rate. Whether that was an act of trust, a leap of faith, or simple hope is up for individual interpretation.
The relationship a person has (or doesn’t have) with a care provider can influence the decision to take medication. Considering the power dynamics that usually exist between a patient and clinician, some amount of trust plays into the decision to follow a plan of care. Proximity to privilege is a big factor in trust. This plays out in things like socio-economic status, access to care, representation in identity and culture, and the frequency in which a person had healthcare before an HIV diagnosis, these are factors in what trust looks like for them.
Think in terms of rapid start. An HIV diagnosis might be a person’s first time seeing a provider; they’ve just had a life-changing event, and they’re expected to start taking a medication, potentially for the rest of their life—all within hours? A person has to trust in something for that to be doable. Even outside of rapid start, the choice to begin HIV treatment can be a matter of what you don’t know against how much you need to know to make a choice. Ciarra “Ci Ci” Covin, a Black HIV advocate, says “I trusted my doctor more [than the medication] because I trusted the science. I trusted that my doctor would be knowledgeable enough to translate the science.” She now uses her platform to help people feel informed and assured in the knowledge about HIV. Historically, Black people have had a complicated relationship with healthcare and medication. For my part, I trusted the medication over my clinician and in what I was able to parse together about how the medication worked because I didn’t feel supported or heard by my first HIV doctor. What I knew at that point was that I wanted to live and feel some version of normal, and ostensibly the medication would make that happen.
We have to remember as well that sometimes, taking medication doesn’t just affect the individual. For example, because infant prophylaxis is “standard of care”, and often standards of care remove choice, or the idea of having a choice, when women become pregnant and have children, they have to reconcile decisions about whether or not they trust the medication to keep their babies HIV-negative against potential toxicity and side effects. This may also become a larger conversation involving their partners or immediate family. I asked Heather O’Conner, a mother and openly positive advocate who has had two HIV-negative children that she breastfed how trust factored into her kids taking ART (anti-retroviral therapy) after they were born. She says in part “With my children, I trusted my doctor much more. Giving the medication to them was a difficult decision to make, but I was reassured time and time again by my provider that the benefits of my breastmilk outweighed any potential side effects that the medication would cause … If given the chance again, I'm not sure I would have my children on the medication, although they presented with no side effects other than temporary gastrointestinal upset and a brief period where they teetered on the edge of slight anemia.” She says her husband felt good about the assurances from the doctor, but also held trust in her as a mother. The underlying faith in pregnancy is that medications and undetectable status will prevent transmission of HIV from mother to child.
As medication delivery modalities change, information about drugs and how they work must remain readily accessible and understandable. Clinicians involved in HIV have to remember how important a patient’s trust is in either the care provider themselves or in the medication they are prescribed. Trust given is not trust so easily rebuilt once lost.
Bridgette Picou, LVN, ACLPN, is a licensed vocational and certified AIDS Care Nurse in Palm Springs, California. She works for The Well Project-HIV and Women as their stakeholder liaison. Bridgette is a director at large for ANAC (the Association of Nurses in AIDS Care), and a sitting member of the board of directors for HIV & Aging Research Project-Palm Springs (HARP-PS). Bridgette’s goal is to remind people that there are lives being lived behind a three- or four-letter acronym.