Stop Shaming HIV Treatment Fatigue and Detectability

Francisco Luis White
Francisco Luis White

The World Health Organization (WHO)'s recommendations are clear: Those who are newly diagnosed with HIV should begin antiretroviral treatment (ART) as soon as possible and adhere to it strictly for better long-term health outcomes. For ideal patients in ideal circumstances, beginning and sticking to lifetime treatment will go smoothly. We know, however, that readiness, willingness and ability to commit to treatment varies. While medical providers and everyone working along the care continuum should heed the WHO recommendation in order to reduce rates of transmission through viral suppression in individuals and ultimately in whole communities, they should also provide judgment-free and culturally competent care to those patients whose health care journeys don't fit neatly within the guidelines.

There are, of course, the obvious systemic barriers to care such as proximity to and accessibility of services. However, in working with young, positive, black men who have sex with men (MSM) and transgender women, I've come to have a better understanding of the many other valid reasons why individuals choose to postpone or discontinue their treatment. Some people are simply not ready for the lifelong medical commitment. Others are exhausted by care that is not holistic and choose to disengage from it. While I've often heard this conveniently referred to as "falling out of care" or "non-compliance," it's crucial that we learn to see it as people taking ownership of their health care and communicating how they want to be treated. It's the responsibility of providers not only to understand the barriers, but also to accept and respect both patient hesitation and treatment fatigue. It's time that HIV-positive people are treated as more than the hosts of a virus that needs to be suppressed and managed.

Treating Whole People for Better Health Outcomes

Whenever I speak of holistic care, people assume I'm just referring to non-Western complimentary practices like mindfulness and herbal medicine. While these additional health care options are worth exploring as part of a personalized treatment plan, I'm also referring to a clinical approach that is focused on meeting people's psychological and emotional needs. Truly holistic care takes the totality of a patient's circumstances into consideration, tailoring his or her treatment and long-term care plan accordingly. When treating HIV, that requires medical providers to see beyond pills and viral loads.

Two years ago, I made the unpopular personal choice to discontinue my ART -- contrary to my physician's professional opinion but closely monitored by an infectious disease care team. I was years into an effective one-pill regimen and undetectable, but the psychological toll and side effects had become more than I could tolerate. It was a decision about my body and my health care plan that I would have to defend many times in discussions with friends and medical providers, despite how sexually responsible I am and the obviously health-focused life I lead. What I can say with certainty is that no amount of shaming pushed me to resume ART. Instead, I resumed due to a care team with a holistic approach that treated me as a whole person.

Ending the Other Stigma

The imposed shame of not being on medication, of being detectable, actually extended my treatment hiatus. For months, I felt as though I couldn't face another nurse or physician judging and criticizing the decision I made about my body. I stopped going to appointments altogether because it felt as though the health care team was disgusted by me. It wasn't until I changed providers that I was able to bring myself to speak openly and honestly again, in the clinic, about my HIV care journey. Genuine concern for my overall well-being and respect for my bodily autonomy allowed me to resume treatment when I was ready to recommit.

We talk about HIV stigma, the stigma of being positive, as a significant hindrance to testing and prevention efforts as well as a barrier to care. What we don't really discuss is stigmatized detectability. People living with HIV, at any viral load and any level of commitment to ART, deserve compassionate care and respect. Their opinions and experiences are crucial as we determine how to best serve the communities hardest hit by this epidemic. I'm thankful to be able to thrive with this condition in a period of advancement in the efficacy of available ART regimens, at a time when achieving viral suppression is becoming increasingly common and we're making strides toward ending the spread of HIV. To ensure that we all reach that goal together, we have to end all stigmas.

Francisco Luis White is a writer, speaker and HIV advocate residing in New York City. He has contributed to various publications and blogs primarily at FranciscoLWhite.com.