Dr Caroline Foster presented data from St Mary’s, London’s
leading hospital for the care of children living with HIV. During adolescence,
care is ‘transitioned’ from the family HIV clinic to a youth clinic that is
located within the adult HIV department. This is a gradual process in which the
young person is supported to take more responsibility for managing his or her
own healthcare. The youth clinic is staffed by a doctor, clinical nurse
specialist, peer support worker, psychologist, dietitian and pharmacist.
The review included all 182 patients who were born with HIV
and who transitioned to the youth clinic between 2006 and 2017. Their current
ages range between 18 and 33 years, with half being 22 years or under. Just
over half are female and 85% are of black African ethnicity.
Retention in care has been very good, with 158 (87%) still
attending HIV services at St Mary’s. Sixteen people have transferred their care
to other services, four have been lost to follow-up and four have died. Foster
attributed the success to the holistic care provided and lowering barriers to young people re-engaging with care – for example not needing to have an appointment.
All but one (157 of 158) are taking HIV treatment, 80% (127
of 158) have an undetectable viral load and the median CD4 cell count is 626 cells/mm3.
Among those aged 25 years or older, 87% (39 of 45) have an undetectable viral
Although many of those in their late teens and early
twenties struggle with adherence to medication and engagement with care, things
often improve once patients reach their mid-twenties. “They get there in the
end, but sometimes you have to be quite creative in supporting them through
that period,” Foster said.
This was corroborated by an analysis from the adolescent
clinic at another London hospital, the Mortimer Market Centre.
Among those in their late teens, only around 30% have a sustained undetectable
viral load. Between the ages of 20 and 23, somewhere between 50 and 60% are
undetectable. The proportion steadily rises, until it reaches 100% at the age
of 28, where it remains.
Returning to the St Mary’s cohort, although the majority
have good outcomes, a significant minority do have difficulties. Twenty per
cent currently have a detectable viral load and 11% a CD4 cell count below 200 cells/mm3.
Many have had complex treatment histories, including previous use of
suboptimal regimens, resulting in resistance to multiple drug classes and
treatment side-effects. Six have had surgery for lipodystrophy.
Spending or having previously spent time with uncontrolled HIV
does create serious health issues for some young people. Nine per cent (14 of
158) have had an AIDS-defining illness while in adult care, including HIV-associated
wasting, sepsis and opportunistic infections. The incidence of cancer
(especially the blood cancers Hodgkin’s lymphoma and non-Hodgkin’s lymphoma) is
far greater than seen in young people in the general population. Most of those
who develop cancers have had a long history of poor adherence to HIV treatment.
Mental health difficulties are also frequent – 33 have
depression and/or anxiety, eight have psychosis, six have drug or alcohol
dependency and four have learning disabilities. However, this appears to be
linked to the challenging social circumstances in which some of these young
people grow up, rather than specifically related to having HIV themselves. The AALPHI
study compared these issues in adolescents born with HIV and in adolescents
who had HIV-positive family members but did not have HIV themselves, and did
not find significant differences between the two groups.
More encouragingly, 16 patients are now parents to a total
of 25 children, none of whom have HIV.