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
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
These findings lead the investigators to
comment, “Surveillance data alone has limitations as a tool for identifying
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
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
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