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Individualized Support for HIV
In HIV Care, One Pill, Treatment Modality, Guideline, or Goal Does Not Fit All

Released: November 01, 2023

Nina I. Martinez
Nina I. Martinez,
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Key Takeaways
  • There are peaks and valleys in physical and mental wellness for each individual living with HIV, so that one pill, treatment modality, guideline, or goal does not fit all.
  • Retaining people living with HIV as patients in your practice will mean listening to them about their values and preferences, fears, doubts about self-efficacy, their own competing priorities, and a shared decision-making process with you as their healthcare professional.

When I was 8 years old, newly diagnosed with HIV, I never could have imagined becoming the United States’ first living organ donor with HIV at age 35 or discussing such a journey alongside other people living with HIV and HIV healthcare professionals (HCPs) as part of an IDWeek satellite symposium titled, “Breaking Down Barriers: Dialogues on Optimizing Engagement in HIV Care.”

It would have been hard to see a pediatric patient making medical history in 2019, someone who had poor adherence to HIV monotherapy in the mid-1990s, and as such, delayed adoption of and adherence to highly active antiretroviral therapy or multiclass combination antiretroviral therapy (ART) until 2013.

My journey with HIV is not unlike others—journeys that can include a late diagnosis, missed medication doses, and drug holidays for years at a time. That I survived foregoing combination ART as the standard of care for as long as I did is very lucky indeed, but that I was able to get back “on track” is because I was supported every step of the way of my journey with HIV by my HCPs who cared for me.

The Standard of Care May Not Always Fit an Individual's Real Life
We often talk about engagement in HIV care as an all-or-nothing binary, but modern understanding of HIV must include the consideration that this condition is an episodic disability; that there are peaks and valleys in physical and mental wellness; that one pill, treatment modality, guideline, or goal does not fit all.

At our recent symposium, panelists recognized that—although individuals make up the foundation of population studies and resultant guidelines for HIV prevention, support, treatment, and care—we must not automatically assign what is popular for a group as suitable by default for a given patient.

We have to look at ways we hold people living with HIV to an expectation of decades-long success at adherence—an expectation that we often do not ascribe to patients with other chronic illnesses or even to our own adherence to more commonly used medications and multivitamins. We do this without addressing the needs of people living with HIV related to socioeconomics, trauma, and mental health, leaving us to wonder unnecessarily why they cannot adhere to a given standard of care. When we set the bar for success so high, it is no surprise it might look like failure most of the time.

Ongoing Individualized Support
In 2011, I was ending a four-year period without HIV treatment and ready to try on a new standard of care for myself, but it was preceded by 6 months of my physician making periodic inquiries about whether I was ready to resume HIV medication. It is not that I was choosing not to take medication, that I did not know the potential consequences of forgoing treatment; I simply did not want to mess up ART.

There was no judgment by my physician, and eventually I got to a place where I could see myself doing the “right” thing for myself. To get there, I employed strategies for adherence that included trialing multivitamins for my CD4+ cell count and hormonal contraception for my endometriosis. I needed to get back in the habit, but without the high-risk stakes of HIV medication. Sometimes to find your best self, you have to allow yourself moments of imperfection.

HCPs can support people living with HIV to start or, even restart, ART through current and comprehensive treatment counseling, but also through discussion of what taking a medication every day means for them and addressing any behavioral health problems at the beginning.

Leading With Listening
We are doing patients a disservice when we do not integrate mental health care screenings and interventions to help them (re)engage in HIV care and treatment. We have so many HIV treatment choices available, but retaining your patients in your healthcare practice will mean listening to them about their values and preferences, fears, their doubts about self-efficacy, their own competing priorities, and a shared decision-making process with you as their HCP.

There are many successes to be told in the modern understanding of HIV, and HCPs need to lead with that framework instead of always telling patients what they cannot do or should not do. And if people living with HIV  are falling out of care, HCPs need to think about how their clinic may be inaccessible to people who have received HIV diagnoses but are otherwise historically excluded from accessing HIV treatment, support, and care.

Your Thoughts?
How do you provide ongoing individualized support to people living with HIV in your practice? Join the discussion by posting a comment.