How to End the HIV Epidemic in One Word:  Retention

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The landscape of HIV control looks very different than it did 30 years ago.  In the early days of the epidemic, most people living with HIV didn’t know they had the virus.  Our main challenge was finding them, testing them, and getting them into care.

Fast forward to now:  The problem isn’t finding people with HIV.  Eighty-seven percent of people living with HIV already know they are positive.1  The problem is keeping these people retained in care.

Retention is key because a person can only become virally suppressed if they are regularly in care and staying adherent to the medicines prescribed by their provider.  Viral suppression, in turn, is key because:

  1. People with HIV who achieve and keep an undetectable viral load can live long and healthy lives
  2. When virally suppressed, the virus levels in the body are so low, the virus will not transmit to the HIV negative partner during sex

But of the 1.2 million people living with HIV in the US, only 57% are living with the HIV virus at undetectable levels.  At the same time, the US has over 35,000 new infections a year.2  Nearly two thirds of these new infections come from people who know they are HIV positive, but are not virally suppressed because they aren’t retained in regular care and adhering to their medicines.3  The logical conclusion is inescapable:  If people stay in care and take their medicines, they will be healthier, the number of new transmissions will be reduced, and we will be within throwing distance of the end of this terrible epidemic.

At AHF, we have followed the path of the destructive HIV virus for 36 years, providing care and treatment for anyone who needs it, regardless of ability to pay.  As HIV has changed from a killer to a chronic, but treatable condition, we have pivoted from providing hospice care, to providing pharmacies and health care clinics.  In the days when finding people who were positive and linking them to care was the priority, we developed a cutting-edge linkage model that brings a newly diagnosed individual into care within 72 hours of learning their positive status.  This program has been a model for programs throughout the world.

Since we started opening up clinics in 1991, HIV+ patient census has grown to 56,500.  A few years ago, however, we realized that our growth and size obscured a big problem.  We were losing roughly 12% of our census each year to follow up, and we didn’t know why.  We set our minds to finding out.

We quickly realized that there are two components to retention:  (1) continual engagement and (2) recapture.  At AHF, we have processes in place to keep people engaged in care, mostly through appointment and medication refill reminders.  What we did not have was a systematic process for recapturing patients once they fell out of care.  At first, “falling out of care” meant the patient had not been seen in two years.  Over time, we realized that was too long, and changed the time to one year.  We deployed a team of pharmacy representatives to locate these people through a “cascade” of outreaches that include texts, calls, and letters.  

Since we started our Back in Care program in September 2019, we have brought over 9,000 patients back into care.  The program has been successful beyond our imagination.  Over time, we learned more about why people fell out of care, and debunked wrong assumptions about those reasons.  For example, we learned that most patients left because they moved.  Digging deeper, we learned that most of them moved to areas where AHF had another healthcare center – but because we didn’t know that at the time, we missed an opportunity to link them in their new location.  Also, we learned that many patients didn’t believe they had left care and were mildly surprised by our outreach.  In their minds, they were healthy, so the fact they hadn’t been in for a visit or renewed their prescriptions didn’t trouble them.

In fact, our Back in Care program has been so successful, we are now piloting a program to outreach to patients who have not been seen in six months to one year.  These patients are not necessarily lost to followup, but they are at risk.  Each one has their own unique barriers, so we are deploying community health workers to act as a bridge back to care.  We believe this approach will be as successful as our Back In Care program, because it is founded on the key principles of compassion, understanding, and personal touch – which, in the end, are the essential elements of a successful retention strategy.

  1. What Is the HIV Care Continuum?, October 28, 2022, https://www.hiv.gov/, https://www.hiv.gov/federal-response/policies-issues/hiv-aids-care-continuum/
  2. The HIV/AIDS Epidemic in the United States: The Basics, Jun 07, 2021, https://www.kff.org/, https://www.kff.org/hivaids/fact-sheet/the-hivaids-epidemic-in-the-united-states-the-basics/#:~:text=Today%2C%20there%20are%20more%20than,35%2C000%20new%20infections%20each%20year.
  3. Li Z, Purcell DW, Sansom SL, Hayes D, Hall HI. Vital Signs: HIV Transmission Along the Continuum of Care — United States, 2016. MMWR Morb Mortal Wkly Rep 2019;68:267–272. DOI: http://dx.doi.org/10.15585/mmwr.mm6811e1

Laura Boudreau is Chief of Operations/Risk Management and Quality Improvement at AHF. She can be reached at feedback@ahf.org.

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