Case workers can re-engage a high proportion of HIV-positive people lost to long-term care

Michael Carter
Published: 20 May 2013

Caseworkers helped 50% of HIV-positive people in New York City who had dropped out of care re-engage with HIV medical care, investigators report in the online edition of AIDS. Feeling well was the main reason why these people had initially disengaged from care.

Named-based HIV surveillance data and clinical records were used to identify individuals diagnosed with HIV but who had not had immunological or virological monitoring for several months.

“HIV surveillance data can and should be used by health departments to identify and locate PLWH [people living with HIV] who are LTFU [lost to follow-up], and public health case-workers should investigate such cases with the goal of re-engaging such PLWH in medical care for HIV,” write the authors. “Such efforts are essential to any comprehensive effort to control the HIV epidemic.”

Antiretroviral therapy means that many HIV-positive people now have a normal life expectancy. Virologically suppressive treatment has also been shown to significantly reduce the risk of transmission of HIV.

However, many HIV-positive people in the United States are missing out on the benefits of antiretroviral therapy. Research suggests that almost half are not receiving regular medical care and only 28% have a consistently undetectable viral load.

The situation in New York City is in many respects similar to that seen elsewhere in the United States: 45% of people with HIV are not receiving regular care and approximately a third are lost to follow-up after establishing HIV outpatient care.

Concerned by this situation, investigators in New York City used mandatory named-based HIV and laboratory reporting to identify people lost to follow-up. These people were then contacted by caseworkers who ascertained if they really had disengaged from medical services and, if they had, offered assistance so regular care could be re-established.

 Between July 2008 and December 2010, 797 people with diagnosed HIV infection but no record of clinical monitoring for at least nine months were identified.

Caseworkers were unable to locate 113 (14%) of these people. Of the remaining 684, 46 (7%) had moved outside New York City, been incarcerated or had died.

This left 638 people presumed lost to follow-up. However, caseworkers found that a third of these individuals were currently receiving HIV care. Most of them (73%) had been misclassified as lost to follow-up due to missing or mismatched CD4 and viral load data.

These findings lead the investigators to comment, “Surveillance data alone has limitations as a tool for identifying PLWH-LTFU.”

A total of 409 people were located and confirmed as lost to follow-up. Caseworkers linked 77% of these individuals to care. The investigators were able to confirm that 59% return to care, and 57% had CD4 and viral load monitoring in the twelve months after their first return to care visit, with 48% have two or more visits with immunological and virological monitoring during this period.

“Most PLWH-LTFU were willing to resume care,” write the authors.

Over half the people (55%) confirmed as lost to follow-up were men, most were black (67%), a quarter had injecting drug use as their HIV risk factor and 64% were aged between 30 and 49 years. Approximately a fifth reported a history of incarceration and 75% had been disengaged from HIV care between nine and 29 months before their contact with a caseworker.

CD4 and viral load monitoring showed that the importance of reconnecting the participants with regular care. More than half had a CD4 cell count below 200 cells/mm3, and three-quarters had a CD4 cell count below 350 cells/mm3. Monitoring also showed that 59% of individuals had a first viral load level above 10,000 copies/ml and 18% had an initial viral load above 100,000 copies/ml.

Caseworkers interviewed 161 people confirmed as lost to follow-up about the reasons they dropped out of care. The most commonly report reason was that they “felt good” about their health (41%). Other frequently cited reasons included the pressure of day-to-day responsibilities (16%), the side-effects of anti-HIV drugs (12%), depression (11%), lack of medical insurance (10%) and not wanting to think about being HIV positive (9%). Only a small number of participants (1 to 6%) said they had dropped out of care because they had difficulties accessing healthcare providers or social services.

The authors believe their findings have implications for the control of the HIV epidemic in the US.

“Treatment-as-prevention cannot be achieved unless most PLWH are on treatment, and currently thousands of PLWH in the US are not fully engaged in HIV medical care many years following their HIV diagnoses,” they conclude. “While the cost of deploying caseworkers to find PLWH and re-engage them in care will be substantial, it must be weighed against the cost of greater HIV-related morbidity and mortality among PLWH with untreated HIV, and the increased potential for HIV transmission to sex partners.”


Udeagu C-C et al. Lost – or just not following up?: Public health effort to re-engage HIV-infected persons lost to follow-up into HIV medical care: 108 (120). AIDS 27, online edition, doi: 10.1097/QAD.0b013e328362fdde, 2013.

Community Consensus Statement on Access to HIV Treatment and its Use for Prevention

Together, we can make it happen

We can end HIV soon if people have equal access to HIV drugs as treatment and as PrEP, and have free choice over whether to take them.

Launched today, the Community Consensus Statement is a basic set of principles aimed at making sure that happens.

The Community Consensus Statement is a joint initiative of AVAC, EATG, MSMGF, GNP+, HIV i-Base, the International HIV/AIDS Alliance, ITPC and NAM/aidsmap

This content was checked for accuracy at the time it was written. It may have been superseded by more recent developments. NAM recommends checking whether this is the most current information when making decisions that may affect your health.

NAM’s information is intended to support, rather than replace, consultation with a healthcare professional. Talk to your doctor or another member of your healthcare team for advice tailored to your situation.