Adrian, patient ambassador and healthcare case manager who has been living with HIV for 15 years
Dr. Tulika Singh, HIV specialist and assistant professor at the University of California, Irvine
The HIV treatment landscape has undergone a revolutionary transformation in recent years, now encompassing a larger array of effective options and modalities than ever before. With the approach to HIV care shifting from managing an acute condition to a chronic, manageable one, providers face a new challenge: Are we truly addressing the full spectrum of our patients’ needs and empowering them with choice throughout their lifelong treatment journey?
The new standard of HIV care is not just about what treatments are offered in the clinic, but also how they are offered—with empathy, transparency and a commitment to patient choice at every step. To illuminate this shift, after their live discussion at HIV Care Continuum Conference we caught up with Dr. Tulika Singh, an HIV specialist and assistant professor at the University of California, Irvine, and Adrian, a healthcare case manager who is living with HIV. Their conversation offers candid insights on the lives of people living with HIV moving beyond the goal of viral suppression, highlighting the critical role that patient-provider relationships and emotional health play in a patient’s treatment journey.
Adrian and Dr. Singh were compensated by ViiV Healthcare for their participation in this story.
Dr. Singh: HIV treatment has come a long way—from taking pills multiple times a day, to the option of just one pill a day or long-acting injectables. Adrian, as someone living with HIV, could you tell us about your treatment journey?
Adrian: I received my diagnosis in Miami about 15 years ago. There was an HIV testing unit outside a club and, honestly, I did it just to get free club admission. At that point in my life, HIV was the farthest thing from my mind. I got tested, and moments later, found out I was HIV-positive. I went completely numb. I was 22 years old.
My care journey led me to New York City. Within hours of arriving, I met with an AIDS Service Organization (ASO), and my incredible case manager helped me start treatment with oral medication. Within three months, I became undetectable, but the side effects were challenging. I switched medications several times but still hadn’t found the right fit for me.
My initial goal was always to stay undetectable. Once I achieved that, I shifted my focus to consistency and quality of life. Everyone is different, but for me, taking a daily pill was a daily reminder that I was living with HIV. Asking myself, “Did I take my meds?” became part of my routine. I wanted to feel in control of my health, so I could explore my passions, like traveling, without this constant reminder. That’s when I started asking about other options.
Dr. Singh: I have seen this with my own patients. Finding a medicine that “works” is more than just suppressing the virus. “Working” is also about how the medication fits in each person’s everyday routine, including their personal preferences and the reality of any challenges in taking medication they may face.
Adrian: Exactly, and it was actually through my research that I learned about a long-acting injectable medication and asked my healthcare provider if it could be an option for me. I found a clinic that offered it, and after talking to my doctor to ensure I was able to take this medication safely, I started on the regimen.
For me, switching to a long-acting injectable was incredible. I live a busy life and travel a lot, and this option gives me the flexibility to live the life I want. For the first time, I stopped thinking about my HIV status every day. Instead of needing to remember to take my daily pill, I schedule my shot and go. I didn’t realize how much space HIV was taking up in my head until I switched. Now, I don’t think about it. I just live my life.
Dr. Singh: Hearing you talk about switching to a different treatment option better suited to your needs reinforces how important it is for healthcare providers to keep initiating open and honest conversations about treatment, beyond HIV viral suppression, as part of a holistic approach in caring for a person’s broader health.
Earlier in my career, I admit that I underestimated the complexities of medication adherence, thinking, “It's one pill a day, what’s so hard about taking your medication?” However, my perspective profoundly shifted as I began to learn more about people living with HIV. I witnessed firsthand the struggles with adherence that some individuals face. This understanding was deeply shaped by the experience of a close friend living with HIV; I came to see the importance of really listening to each person, digging for more information, and working together to create the best plan for each individual.
Adrian: Agreed. Open, honest and ongoing conversations about treatment as part of overall well-being make all the difference. I certainly struggled when my first healthcare provider didn't seem to know about the full range of treatment options, including long-acting ones. Dr. Singh, how do you approach this conversation with your patients, even after they've achieved viral suppression?
Dr. Singh: I take things with my patients on a case-by-case basis. We can't have a one-size-fits-all mentality with treatment since we know that what works for one person may not work for another. But the reality is that healthcare providers and clinicians are time-restricted. So, we have to make the most of each appointment and focus not just on the tolerability and efficacy of medication, but on how the medicine impacts each individual person.
My approach is proactive. I say, “Hey, let’s chat about the medication you’re currently on. Is it working for you, and do you feel it’s the best option for you? We have other options to consider, too.” I try not to assume that what’s been a good fit for them before is still their best option now. Empowering patients with choices and ensuring their buy-in is crucial—it's a true partnership. HIV treatment is an ongoing conversation. As health needs evolve, so should care. For those who've achieved suppression, the focus shifts to other aspects of their overall health, including optimizing their long-term health and quality of life. It's about asking: “Where are we going next with your care?”
Adrian: Yes, I had to figure out how to advocate for myself. And advocating can be as simple as “I’m not happy. I know I’m undetectable, but I’m not happy.” Sharing what’s really happening in my life and asking questions and digging for more information is the first step.
I’m fortunate that I found a healthcare provider active in my community who is open, affirming and deeply supportive. With him, I can talk about anything—sex, relationships, obscure health questions—and he responds with respect and resources. It’s more than just medication and care. It’s a partnership.
Dr. Singh: I 100% agree. It’s important to keep the conversation non-judgmental and to create a safe space. People need to feel seen and understood as individuals, not just as their status, and not just as one of many patients I’m seeing that day. Treat your patients as partners in care decisions, because they are the experts of their own experiences.
Dr. Singh: As a healthcare provider and clinician, I always try to take a holistic approach and look at my patients’ broader health, beyond HIV and viral suppression. What does pursuing “total health” mean to you, Adrian, and how has it informed your journey living with HIV?
Adrian: For me, navigating the challenges of living with HIV added a tremendous amount of fear and anxiety to my daily life. This was compounded by stigma, both from others and my own self-stigma. HIV stigma comes in many forms, from culture to family to social pressures. This can be profoundly isolating and debilitating.
So, this idea of total health is about more than just medication. It’s about understanding how to move beyond an HIV diagnosis and learning to thrive physically, mentally and emotionally. For me, therapy and a range of personal strategies, including mindfulness practices and building a strong support network, were an enormous help.
Now that I’ve found my rhythm with a treatment plan that works for me, I have more capacity to focus on my broader health and wellness; in addition to addressing HIV, the overall picture of my health and wellness includes being active, eating healthy, and other aspects that I used to overlook.
Dr. Singh: That is incredible, and that is my goal with my patients. I believe that a complete approach to care, especially when championed by a healthcare provider, can be a game-changer. And it starts with a strong patient-provider relationship where there is honesty and mutual respect, and an understanding that the patient’s well-being extends far beyond their viral load to encompass their mental health, social determinants, way of living, personal aspirations and so much more.
This approach is crucial given that three-fourths of people living with HIV report discomfort discussing at least one issue with their healthcare provider or clinician; many are reluctant to bring up sexual health and safe sex practices,1 which means many questions go unaddressed.
Adrian: I’m often asked, “What would you tell others who are thinking about their medications or having this conversation with their provider?” My answer is always to have the conversation! If you’re looking for an HIV treatment that fits your life, raise it with your provider or clinician. Asking questions is the best way to advocate for yourself. You deserve to live fully, and finding the right treatment is part of a more complete approach to your overall health.
Dr. Singh: Absolutely. I’ve been in the field for a long time, and unfortunately, there are still new HIV diagnoses happening every day; it’s raw and real for each one.2 Every patient deserves the opportunity for a long and healthy life, as well as the best care I can give them.
Whether you’re a person living with HIV or a healthcare provider, I know it’s not always easy to initiate these conversations. But there are resources, including conversation guides, available for those looking to take the first step and start the discussion.
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