should women
be treated differently ?
Has the time come for women living with HIV to receive treatment more tailored
to their needs?
Words Amanda Elliot
Images John Clarkson
After
20 years of working in HIV, Dr Jane Anderson has earned a formidable reputation.
But in recent years she has won additional plaudits for her work on how HIV
affects the lives of African women (and more recently, men) in the UK.Official
figures show around 11,000 of the 25,000 people receiving HIV-related care
in England and Wales in 2003 were women. Women living with HIV in the UK are
most likely to be from an ethnic minority, with 60-70 per cent from Africa.
The major pathologies for HIV are the same in men and women but specific pathologies
like gynaecological disorders clearly only affect women. It is generally accepted
that women get faster viral load suppression with therapy and have a more
durable response. But there are scant data on their specific problems. Most
of the data available on how HIV and HIV drugs affect people in the UK is
largely based on studies of men, and white men at that. Dr Anderson is among
those trying to fill the gap in research into women’s problems with
HIV.We caught up with her at Homerton University Hospital, Hackney, east London,
where she is director of the centre for sexual health and HIV and where 60
per cent of patients are women.
Positive Nation: What did your research on African women in London
tell you about their experiences of living with HIV in the UK?
Dr Jane Anderson: When we started that research in 2001,
more and more women from African backgrounds were seeking healthcare. We knew
they had incredibly complicated lives and problems that had a huge impact
on their health, but there was little literature or evidence documenting this.
We decided to delve deeper to find out how women’s day-to-day lives
were shaped by HIV and their health and social care needs. The result was
My Heart is Loaded which used women’s voices and put some of their experiences
on record for the first time.We learnt a great deal about the substantial
problems many faces as carers, parents and living in a country many did not
consider home, in addition to living with HIV and all that entails. Many were
overwhelmed by problems but despite these challenges I was often amazed at
their strength and stamina.
We need to find better ways to work with those strengths but the structures
are not in place to do that. Inherent strengths, like a strong spiritual belief,
can be a powerful mechanism for helping women get through difficulties and
engage with HIV services. Many of the women we spoke to were reluctant to
use HIV services because they were terrified of meeting someone from their
own community, who would then know their diagnosis. Many African women with
HIV in the UK are literally living across continents. It is as if part of
them is somewhere else. Often they still have responsibilities and family
back home. Some organisations like Positively Women have excellent outreach
workers helping women access peer support in hospitals where they may feel
safer. But there could be so much more. Peer support is incredibly important.
One woman told me: “The day I met another HIV positive woman was the
day my life changed.”
PN: How did the findings affect your clinical practice?
JA: I hope I have a better understanding of the problems women may
face. I try to always inquire about women patients’ religious faith
and whether their church or pastor is able to support them. I am also more
conscious of their other problems. There may considerable anxiety about money,
relationships and frequently, immigration. It’s important to take account
of their home situation and levels of privacy at home.
PN: What do we know about the differences in service and treatment
uptake among heterosexual men and women?
JA: Although African people present later to services than white
British people, women tend to come in at an earlier stage than men. Women
may be diagnosed when they are pregnant and when they are still well. So many
African men who walk through the door here has very advanced disease, with
average CD4 counts well below 200 and they are often very unwell.
PN: Female gender confers cardio-protective effects. How does HIV
influence this?
JA: Pre-menopausal women have a degree of protection against heart
disease in comparison to men. We do not know what the long-term impact of
HIV has on that. We can however hypothesise that HIV and HIV therapy may increase
their risk of heart disease, bringing their risk closer to that of (HIV negative)
men.
PN: Studies suggest women are more likely to stop or switch therapy.
Is this because side-effects are more prevalent in women?
JA: Some studies suggest women do have more side-effects than men,
across all classes of antiretroviral drugs. Although this may be related to
sex differences in metabolism, there is still a lot of work to be done on
this. But most research into the pharmacokinetics of HIV therapy [the way
drugs are absorbed] has only been done on men. Therefore, when it comes to
prescribing HIV therapy, women are treated like men even though higher drug
concentrations may be seen in women for the equivalent dose. Most of the research
into antiretroviral medication tends to only involve women opportunistically,
which means there are relatively few studies specifically designed to answer
questions relating to women and drug metabolism.
PN: Which side effects are more prevalent in women?
JA: Women experience more of all the commonly reported side effects
than men. With lipodystrophy, women are more prone to putting fat on in their
middles than facial wasting, including putting fat on their breasts. There
are other differences that may be more problematic for women. Drug-induced
nail pigmentation can be more noticeable in people with black skin. In white
men this may appear as greyness whereas in African women it will appear as
a big black stripe. It also seems women may experience more central nervous
system disturbance with efavirenz than men, especially at the beginning of
therapy. Insulin resistance is associated with female sex even without HIV
and there is more osteoporosis in women.
PN: During the last year, the NNRTIs nevirapine and efavirenz have
fallen out of favour as treatments for women during pregnancy. Why?
JA: Newer research has had a big impact on clinical practice in this
area. There is now good evidence women with HIV get greater side effects with
nevirapine than men. Women are 12 times more likely to get liver side effects
(hepatotoxicity) than men, although we are not sure what the reason for this
may be. This is particularly the case for women with CD4 counts above 250.
Current advice is that women in this situation should not be prescribed nevirapine.Efavirenz
should not be prescribed to pregnant women or women trying to get pregnant.
This is based on information from studies in monkeys where foetal abnormalities
occured. However, the data for harm in humans is less robust and there have
been pregnancies in women who have been on efavirenz. Women and babies in
this situation have been monitored closely and so far we have not seen any
problems. Nonetheless, for those women already on efavirenz when they fall
pregnant, we discuss all the evidence and find out what’s right for
them.We have to take full account of the mother’s health as well as
her baby’s. Virological suppression is important for both and failure
to properly address the health of the mother could be a risk factor for the
child. Decisions taken about treatment in pregnancy will have an impact on
the mothers care for the rest of her life. For those women already on efavirenz
planning a pregnancy, we will offer a switch to more foetus-friendly antiretrovirals.
PN: What are the alternatives?
JA: Protease inhibitors such as lopinavir/ritonavir or saquinavir/ritonavir,
although there is some evidence that PI drug levels may be lower in pregnant
women Therapy must be tailored to the woman, her clinical needs, her lifestyle,
and the resistance profile of her virus.
Dr Anderson’s well-woman guide
* Timely HIV diagnosis
* Psychosocial and peer support
* Appropriate advice and support on
reproductive choices
* Regular gynaecological examination
and smears
* Advice on specific aspects of
short- and long-term side effects
* Eating well
* Stopping smoking
* Ensuring balance in your life
* Regular monitoring
• Positively Women has produced a new booklet, supported by Bristol-Myers
Squibb, which deals with a range of issues for women living with HIV. It
is available by calling 020 7713 0444