TODDLERS TO TEENS
TREATING KIDS WITH HIV
There are around 1,000 children with HIV in the UK.
Dr Hermione Lyall is one of the doctors making sure they make it to adulthood,
writes Susan Cole
itting in the paediatric out-patients at St Mary’s Hospital, London,
I’m eyed suspiciously by a toddler brandishing an ominous, melted Mars
bar. He lunges towards me, seemingly intent on smearing my white skirt with
his
chocolatey mess, while his tiny comrades hurtle around the waiting area in
frenzied high spirits. I’m rescued in
the nick of time by Dr Hermione Lyall, consultant in paediatric infectious
diseases, who seems cheerfully oblivious to the Armageddon around her.
It’s difficult not to immediately warm to Hermione. Tiny, with a soft
Scottish accent, she demonstrates none of the grandeur and ego you might expect
from one of Europe’s leading experts on children and HIV. She has worked
at St Mary’s since 1994; prior to that she worked with three children
with HIV
in Edinburgh.
“That’s what really got me really interested in HIV,” she
says. Currently Hermione sees between 150-200
children living with HIV at St Mary’s and is involved in the care of
children at a number of other hospitals.
I ask her about the epidemic in the UK. “At the moment there are around
1,000 children living with HIV in the UK. The number of children born with
HIV in the UK has been continually decreasing over time, and at the moment
about 60 per cent of the children we see were born abroad and that figure
continues to increase.”
Rapid progression
I asked her how the course of HIV infection differs in adults and children.
“Well, there are two important things,” she begins. “One
is what we know from the data we had before combination therapy for children:
that survival in children was less than in adults.
“By the age of 10, 50 per cent had either died or developed Aids. So
there was a more rapid decline.
“In addition, and maybe most importantly, up to 20 per cent of children
infected in the first year of life developed Aids (usually PCP or pneumonia
related), severe failure to thrive, or died. With adults you don’t often
see such severe presentation in the first year of infection. Those 20 per
cent of babies who were progressing rapidly were most likely to die the quickest.”
More births, less transmission
“We have to work very hard to protect infants from HIV. And the best
way to do that is to prevent them getting it in the first place. Women are
now tested in pregnancy. Mothers with HIV can get anti-retroviral drugs, avoid
breast feeding and opt for elective Caesarean section, and the risk of passing
on HIV to their baby is very low.
“The number of new babies infected with HIV in the UK is now tiny, but
the number of mothers with HIV having babies continues to increase quite dramatically.
We’re seeing very few newly infected babies, which is good news.”
Early starters
Doctors starting children on HIV treatment follow the PENTA (Paediatric European
Network for the treatment of Aids) guidelines.
“A new set of PENTA guidelines came out in 2004. Infants are treated
even if they have minimal symptoms and quite high CD4 counts. There’s
some evidence from a French cohort that suggests if you treat infants in the
first six months of life you can prevent the onset of Aids.
“But outside the infant period there’s a very big cohort of almost
4,000 children that shows the risk of progression relates to CD4 percentage.”
This is the proportion of all immune cells that are CD4 cells; in an HIV negative
person this would usually be 40 per cent. Normally with HIV infection the
proportion declines over time and when it reaches 20 per cent this represents
the same chance of getting sick as a CD4 count of 200.
“We’ve created an algorithm which recommends they start treatment
if they’ve got HIV-related symptoms, or if they’ve got CD4 counts
that put them at risk of disease progression. The aim is that anyone who has
more than 10 per cent risk of progression within the next year should be started
on treatment.”
Toxicity in kids
She says treatment for children is much the same as adults.
“You’re looking at combination
therapy with an NRTI backbone and either a PI or NNRTI. Obviously there are
many issues for children such as the formulation of the drugs, acceptability,
taste, etc, as well as pharmacokinetics, as sometimes there’s not much
data on the formulation of certain drugs for children of a particular age.
“Nobody knows for certain with children if it’s better to start
with an NNRTI regime or a PI regime and there’s currently a study where
children are randomised to start either with a PI or NNRTI. It’s looking
at toxicity and acceptability as well as the response to treatment.
“Toxicity issues are very important for children who start treatment
at a young age when their organs are still developing and the risk of toxicities
may be greater for them than for adults.”
Pharmas and paediatric drugs
It is widely assumed that there isn’t the financial incentive for pharmaceutical
companies to develop new drugs for children, as few children in the West are
now diagnosed with HIV. I asked her thoughts on this and whether any new drugs
were being developed. She answered with great diplomacy.
“There are fewer children diagnosed than there are adults and the drug
companies have to put a lot of effort into making liquid formulations for
children which are very difficult to make. “I think all the companies
make an effort to produce paediatric formulations although sometimes the progress
is slower than we would like it to be.
“But in many cases it’s actually related to technical difficulties.
There’s a lot of good will from the drug companies in trying to make
HIV drugs for children. They are making an effort. The vast majority of drugs
developed for adults are also trialled for children in parallel.
“New drugs in the pipeline for adults are also being developed for children.
But we’re always a little bit behind. If there are severe toxicities
first found in adults, it’s important to protect children from these,
so it’s good for drugs to be tried out first in adult.”
Fewer side effects
What about side effects in children? “Interestingly, children seem to
tolerate a lot of anti-retrovirals better than adults,” she explains.
“I don’t know if that has anything to do with psychological effects
or anxiety; maybe adults are sometimes more worried about going on to treatment.
Younger children in particular don’t have these anxieties. So we see
fewer side effects in children but the same range of side effects.
“What worries me about children and anti-retrovirals is not the short-term
immediate side effects but those that we may see in 20 or 30 years time. I’m
concerned about possible long-term side effects that we don’t even know
about yet. For example, could there be an increased risk of malignancy, or
effects on fertility or other organs in the body?
“However, when you put it in the
balance, at the moment anti-retrovirals are still the best things for treating
the infection and keeping children well.”
Adolescence and HIV
Currently, around 20 per cent of Hermione’s patients are over 12. Did
adolescents living with HIV have
different problems to those of younger children?
“There are a lot of big issues for them,” she begins. “Issues
around sexuality, relationships and gaining
independence. Older children might not feel able to talk to their friends
about their health status and may have to carry the burden very much on their
own. We see lots of depression and
behavioural problems in adolescents because of these issues.”
Telling children they are HIV positive
HIV doctors use various strategies to tell children about their diagnoses.
They are also now more direct in encouraging parents to tell their child that
he or she is living with HIV.
“Of course parents want to protect their children, but it’s important
for the kids to understand about their own
condition. When children are between nine and 11 we first start to talk to
them about fighter cells and an infection in the blood. We have a complete
educational package.
“The next stage is to talk to them about having a virus and the amount
of virus in the blood. Gradually we then name the virus. This process can
take up to a year or two, so when they finally know they have HIV, they are
quite confident about it.
“We now tell parents about the disclosure process and may have to push
them on it a bit,” Hermione continues. It’s easier for children
to know about HIV when they’re 10 or 11 rather than when they are in
the roller coaster of adolescence. Parents are often scared that their children
will tell friends
and everyone.
“However, we reassure parents that children rarely do this. Children
can appreciate that there are only certain people they can discuss it with.
We are very lucky to have psychologists and nurse specialists to support children
through this.”
Keeping down the meds
How do they deal with adherence problems in children at St Mary’s?
“It’s important to have specialist nurse input to help parents
with issues around
adherence. We are not just treating the child, but the whole family, so we
need to have family clinics for issues faced by the whole family.”
“It’s more difficult to get the virus under control in children
who vomit or spit out their medication a lot. A
gastrostomy tube (a tube that is fitted into the stomach into which medicines
can be directly injected) can make a real difference in treating children
who find taking their medication difficult. And it can be a great relief to
their parents. We even have some teenagers who still use one. If they are
not able to swallow liquids it can really help. How long the tube stays in
depends on the individual case.”
What would she say to a parent whose child has recently been diagnosed with
HIV? “I would say your child has a
long-term future, although we can’t say exactly how long. I would expect
your child to grow up to be an adult, have a job and a family. It’s
very important for the child to be well-monitored and to begin treatment when
necessary.”
• PENTA: www.ctu.mrc.ac.uk/penta
