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HIV Return to Care
A Triumphant Return: Welcoming People Back to HIV Care

Released: May 24, 2024

Expiration: May 23, 2025

Linda-Gail Bekker
Linda-Gail Bekker, MBChB, DTM&H, DCH, FCP(SA), PhD
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Key Takeaways
  • Cycling in and out of HIV care is part of the cascade of care, and healthcare professionals must be aware and accepting of this practice—returning to care should be celebrated and not punished.
  • It is important to establish the causes of treatment disengagement so that the causes can be reviewed, supported, and overcome.

For people living with HIV and healthcare professionals (HCPs) alike, the return to care is a pivotal step in the HIV journey. According to the CDC, only approximately 50% of people living with HIV are consistently retained in care, making it crucial for people returning to care to feel welcomed and supported during this critical time. This is key to meeting the important goal of achieving undetectable HIV-1 RNA and return to health for people living with HIV.

To begin the discussion about the return to care and our attitude toward this phenomenon as HCPs, I will start with an illustrative case. This individual is a 38-year-old woman living with HIV who has a son with special needs. Her 4-year-old son was born shortly after her HIV diagnosis.

She was last seen at our clinic in April 2023. At that visit, her HIV-1 RNA was undetectable, her CD4 count was 659 cells/mL, and she was receiving an antiretroviral therapy (ART) regimen of dolutegravir (DTG)/lamivudine (3TC)/tenofovir disoproxil fumarate (TDF). She appeared happy, and although her son was a handful, she had support caring for him. All seemed well.

However, she then did not return to the clinic for scheduled appointments and 2 attempts to call her went unanswered. After many months, she reappeared out of the blue 3 weeks ago, presenting with a productive cough. It was obvious that she had lost quite a lot of weight during her time away. She also was listless and seemed depressed. Her CD4 count was now 156 cells/mL, and her HIV-1 RNA was 850,000 copies/mL, a drastic change since her last visit. Her sputum was positive for drug-sensitive mycobacterium tuberculosis.

 
Welcome Back
In my clinic, the standard practice for people like this is to welcome them back to care, which encompasses addressing both their acute health needs and the circumstances that led them to disengage and reengage with care. This person was immediately seen by an HCP, followed by an empathetic peer counselor. Her story then unfolded.

This was a mother who had to return to her family home after the father of her 4-year-old son suddenly died of HIV. His family kicked her out, blaming her for bringing infection into the home. At this point, she had nowhere else to go and immediately returned to her family, who live out of town. She also was trying to find employment and supportive care for her son, and she began to sicken 2 months ago. Fearing that she had tuberculosis and worried about whether she might have passed the infection to her son, she returned to my clinic to find care. She mentioned that she had heard the messages left on her voicemail by the clinic, and this had given her hope that she would not be turned away if she returned.

She also expressed that she had not taken any ART since her supply ran out in June of 2023. Because this was not a case of stopping and starting treatment, the HCP who saw her felt confident that the risk of resistance mutations was low and was willing to reestablish her on her primary regimen of DTG/3TC/TDF within a 2- to 8-week period, depending on how well she did on tuberculosis therapy.

The counselor established that she had a safe place to stay in the interim and discussed where she would prefer to receive her ongoing care, given that she was now living out of town. The counselor also referred her for a social work assessment to receive more social support, particularly an income grant for her son’s care and management and an assessment for further mental health support. Because she was going back to her family out of town, she also received a referral letter with her medical history and contacts for a preferred local clinic, as well as recommendations for household contacts and for her son to be screened for tuberculosis. 

 
Getting to the Source
This case illustrates the fact that most of our patients have very good reasons for disengaging from care and that cycling in and out of care is common. HCPs now realize that this is part of the cascade of care and that we must be aware and accepting of this practice.

I believe that returning to care should be celebrated and not punished. When people find their way back into care—whether it is after a few months or a few years—we need to welcome them back. This is not to say that disengaging with care is a part of best practices. It is not recommended, and it obviously undermines patients’ outcomes and the public health benefit of treatment. Nevertheless, getting people back into care is better than permanently losing them to follow-up. Therefore, it is important to provide a welcoming return. Our attitude is key to all of this, and I do not just mean HCPs. This starts with the people who meet with patients at the reception desk and includes counsellors, ancillary staff, and nurses, who often do the initial clinical assessments.

This brings me to the next point, which is that patterns of disengagement and reengagement can vary from person to person. Some people disengage only once, often because of life transitions or significant extenuating circumstances, and are model patients following their return to care.

However, there are others who may engage and disengage from treatment a number of times. Unless HCPs get to the heart of why they are disengaging, these patients may develop a pattern of starting and stopping treatment that can be very detrimental to their long-term health. Thus, it is important to establish the causes of treatment disengagement so that they can be reviewed, supported, and overcome. In that sense, supported patient navigation is very valuable.

Reaching Out

Resource-limited settings often do not have dedicated patient navigators readily on hand, but there are wonderful programs that have, through non-governmental structures, been able to address these needs with very good effect. For example, there is a program in Zimbabwe, the Zvandiri program, that connects young people living with HIV to trained peer counselors (called CATS) who also are living with HIV. Counselors are able to connect with their peers at home, in clinics and support groups, and through mobile health to provide wide-ranging support. The improvements in HIV care continuum outcomes associated with this program were so striking that it was adopted by 13 other countries.

The success of this program underscores the importance of peer support and supported navigation to get people back to care. The data show that outreach provides a sense of value and can be the trigger for people to reengage with care. Outreach programs also reduce the likelihood of disengagement in the future. At the very least, people should be supported with empathic peer counseling when they return to care to unpack their reasons for disengagement and determine what both HCPs and individuals alike can do to overcome these challenges and reduce the likelihood of further disengagement. 

 
It is also our responsibility as HCPs to identify support structures that may be missing. People may disengage due to stigma; mental health issues; substance use issues or other social, structural, and personal issues; or purely access barriers. So, the solution may be as simple as having a discussion about locating a clinic closer to home or multimonth dispensing arrangement to reduce the number of trips people will need to make to the pharmacy.

 
A Common Goal
The last point I want to make is that patients generally want the best possible outcomes for themselves—the same way that we do.  We need to remember that and work with them to attain that goal. We should not turn them away at the gate or scold them, but welcome them back when they return to care. We should make it a triumphant return by making them feel valued and work with them to reduce the possibility of disengagement happening again. It is about making sure our patients go beyond just surviving to thriving. 

Your Thoughts?
How often do you see patients returning to care? What are some ways that you make them feel welcomed back into care? Leave a comment to join the discussion!