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Persisting in HIV Care

CE / CME

Persisting in Care: Ensuring HIV Services Are Inclusive and Equitable

Nurses: 1.00 Nursing contact hour

Pharmacists: 1.00 contact hour (0.1 CEUs)

Physicians: maximum of 1.00 AMA PRA Category 1 Credit™

Released: September 12, 2024

Expiration: September 11, 2025

CME/CE Information

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Prevalence-Based HIV Care Continuum in United States in 2021

In more recent years, great strides have been made in making sure that people with HIV are diagnosed and linked to care. However, as you can see in the graph, only 54% of people living with HIV are retained in care. So we have some work to do!1,2

To this end, this module will discuss how to support people with HIV persisting in care and ensuring that HIV services are inclusive and equitable.

I discuss strategies for this in depth, but overall, the primary takeaway from this topic is that healthcare professionals (HCPs) need to be open to getting to know the individual they are working with and take the time to thoroughly determine what their needs are. That is the best way to ensure that patients persist in care.

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Patient Perspectives: Broad Concerns

From the patient perspective, barriers to care can be separated into 4 broad categories: physical/medical, psychological, social, and administrative.3

Counterintuitively, sometimes patients’ anxieties about their prognosis after diagnosis can prevent them from engaging in HIV care. In my experience, I often encounter individuals who come into clinic and attend appointments on a regular basis, but then drop off. When asked, they say that they stop following up because they no longer see the point of engaging in care. They ask, “What's the point of wasting my time coming to these clinic visits if I’m just going to die of HIV anyway?” It is common for feelings of shock or depression to strike some time after the initial diagnosis.

Psychological concerns also can be barriers. The most pertinent one, in my experience, has been the sentiment that people strongly dislike coming to their appointments because every time they even see the clinic building, it reminds them that they have HIV, triggering feelings of anxiety or depression.

That leads into another common barrier to care: social stigma. People living with HIV deal with stigma on numerous levels—sex stigma, sexuality-related stigma, gendered stigma, substance use stigma—on top of the stigma of having HIV itself. It is not only about the stigma that society places on people living with HIV, but it is also the stigma that they place on themselves.

Furthermore, people who rely on transportation from others, those who live with other people, or who work at jobs that are not flexible about sick time may not be able to avoid disclosing their HIV status. It can be very stressful trying to navigate that and trying to maintain professional and personal relationships.

Finally, administrative barriers exist because healthcare systems, particularly in the United States, are challenging to navigate. For example, it can be very discouraging for people living with HIV to go to the pharmacy to pick up their antiretroviral medications and find that they cannot afford them because of problems with their insurance. Just imagine that that happens more than once. People may start to say, “The clinic does not care, so why should I?”

The separation of HIV care from primary care or specialty care for other health concerns can also be a problem for people who have limited time and resources to attend clinic visits.

In fact, I find that this ties in with psychological barriers to care: Many people living with HIV also have mental health challenges, and addressing that mental health need would really help them engage and persist in HIV care. But many HIV clinics do not offer co-location of mental health services, making it difficult for people living with HIV to address both health needs.

Ultimately, although individual reasons for being lost to follow-up will differ from person to person, barriers to care can be categorized into broad concerns. These are the things that HCPs need to think about when we are trying to understand why some people continue to engage in care and why other people discontinue care at some point.

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Patient Perspectives: Potential Solutions

Let us talk about some solutions. What are some things that HCPs can do, or areas where we can potentially intervene, to make things better for the people whom we serve?

First, we can start with anticipatory guidance or setting realistic expectations for their future in care, describing the picture of what care will look like in general. It is important to do this without overwhelming people with details because that first visit can be very, very challenging. The key is to be realistic, but positive.

I tell people that, generally speaking, we will see you every quarter or every 6 months, and each visit will involve a blood draw. But above all, I try to emphasize that HIV is just another chronic condition. You can live, do all the fun things you want to do, accomplish all the goals you have, as long as you take this medicine. Our goal is to help you succeed.3

Listen to Marc Thompson, a person living with HIV in London, England, as he shares an advocate’s perspective on best practices in the clinic.  

Other than caring for their physical health, a key way that we can help people succeed is providing resources for finding a support system and working through social stigma. Some HIV clinics have support groups that people are automatically evaluated for, and each person is connected to a support group that fits their needs. Other clinics partner with community organizations that have peer support, so individuals who have been living with HIV for longer are available to help newly diagnosed people come to terms with their diagnosis and navigate healthcare. I think this is particularly effective for overcoming stigma, learning to navigate healthcare, and finding community all in one. Ultimately, I think building and finding community is key.3

However, HCPs also have to remember to meet people where they are and allow each person time to become ready. Not everyone will be ready to build community right after their diagnosis. Some people may be hesitant to build community in this particular space because they are worried about disclosure and confidentiality. It can take time, but once you figure out what works for the particular person and you link them to an appropriate community, it is going to have a profoundly positive effect on their care.3

Finally, we must remember that all members of the healthcare team are part of that community, and it is our responsibility to help wherever we can. Life can get very busy—all of us have so much work to do—but still, the patient needs our assistance. Therefore, whether it is providing help navigating the healthcare system ourselves or connecting people to others who can help, we must do our best to fulfill that role.3

Listen to Marc Thompson as he describes how helpful it is to have access to social and emotional support, either through peer support or other specialists.  

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