10 TOP THINGS YOU WANTED
TO KNOW IN 2006
As the year draws to a close, PN’s roving treatments editor Robert
Fieldhouse looks back on his UK treatment tours and tells us the
ten top things most on your mind in 2006.
Illustration Antonio Maggi
My
work gives me a unique opportunity to meet thousands of people living with
HIV. Each year I travel the length and breadth of the UK giving treatment
talks to anyone interested from Belfast to Brighton. What drives my work is
a desire to enable anyone affected by HIV, regardless of where they live,
to discuss, debate and learn about up-to-date treatment information.
No single HIV agency has ever managed to provide such a service across the
UK; it’s a time-consuming and expensive undertaking, and would not be
possible without the support of the pharmaceutical industry.
Over the past year, I’ve had the pleasure of being inspired by, and
hopefully inspiring, thousands of individuals living with HIV. Luton, Sheffield,
Newcastle, Bournemouth and Southampton are some of the places where people
were bold enough to share their stories.
Often people I speak to ask similar questions so, for the benefit of all those
who missed my 2006 tours, here are the ten most common - with answers.
Am
I going to die?
Yes, we all do at sometime. But in the UK, HIV’s ability to move us
more speedily to an untimely end has been severely hampered by new and effective
therapies.
A young, recently-diagnosed woman asked me, “How long have I got?”
I struggled for a moment before realising she was still under the impression
her death was imminent. I told her if she started treatment at the point her
doctor advised, and took it as prescribed, she could hope to have a normal
life expectancy.
On a more sombre note, studies show, much the same as the general population,
people living with HIV can expect to die of lung, liver and heart disease
as well as cancer. Our risk of developing these is increased by the HIV, but
unlike most of the general population we get constant medical monitoring that
may allow us to identify problems at an early, easier-to-treat stage.
Which tests should I be offered if I’ve just been diagnosed?
Firstly,
it’s important that your HIV antibody test is confirmed with a second
test.
A viral load blood test will measure the amount of virus in your blood. CD4
testing can be used to see how much damage the virus has done to your immune
system.
If you have been fairly recently infected, ask about having a ‘de-tuned
antibody test’ which can identify how likely it is your infection occurred
within the past six months. If you are identified as a recent seroconverter,
you should be offered the chance to take part in a clinical trial to see if
taking HIV treatment at this early stage could protect your immune system
from becoming completely battered by HIV.
The number of newly diagnosed people who have a strain of HIV resistant to
certain drugs is rising, so you should also be offered a drug resistance test
to see which options work best for you. The British HIV Association (BHIVA)
guidelines are clear about this, though some clinics across the UK still don’t
offer a test to the recently diagnosed. www.bhiva.org
What should I do if I am losing body fat?
Ask
if it is possible for you to switch some or all of your HIV drugs. If you
are taking the thymidine analogue nukes d4T (Zerit) or AZT (Retrovir, Combivir
or Trizivir) you should be offered the chance to switch to drugs that are
‘cleaner’ from a fat loss perspective.
These ‘cleaner’ drugs currently are tenofovir (Viread) and abacavir
(Ziagen). Studies show switching to either of these is associated with a gain
in weight of around 1 kilo over one or two years.
Ask to be referred to a dietitian who specialises in HIV. If you clinic does
not have one you can seek advice from DHIVA, a group of dietitians with expertise
in HIV.
Take up exercise, such as resistance training, as studies show that as little
as three times a week for 30 minutes can bring results. Stop smoking, you
might gain a few pounds, and you’ll certainly save many more.
Will there ever be/is there already a cure?
It
always amazes me how many people think a cure already exists and is being
suppressed by the powers that be, in a ruthless attempt to protect the billion
dollar revenue garnered by antiretrovirals in the richer nations. There will
always be conspiracy theories but I don’t buy them.
I hope that one day the various scientific challenges which prevent us finding
a cure will be overcome. For this to become reality we’d have to find
ways of eradicating HIV from so-called ‘sanctuary’ sites where
it reproduces at very low levels. Some drugs don’t attain good levels
in the brain, which may allow HIV to replicate there despite being undetectable.
Antiretroviral therapy as we know it is insufficient to eradicate HIV, but
many studies around the world are exploring ways of doing just that.
What if I need access to unlicensed drugs?
It’s
rare for people to burn through all their options, but it does happen. There
are a couple of ways of obtaining drugs before they become fully approved,
though you should discuss the relative risks with your doctor. You could enrol
in a clinical trial, but may have to go to another clinic to do this, and
will need to meet selection criteria. Secondly, you could wait for a drug
to become more available through an ‘expanded access’ or ‘named
patient’ scheme that provides the drug to a wider range of patients,
and provides the pharmaceutical company with more information about a product
before it is approved.
What if I am unhappy with my clinic?
Most
people are happy and satisfied with the level of care they receive. BHIVA
treatment guidelines and MEDFASH HIV standards are not recipes for how patients
should be treated, but they do exist to try to establish equality of care
regardless of where you live. Most of us living with HIV in the UK have the
right to receive our HIV care from whichever hospital or doctor we choose.
If you are unhappy with your care, speak to your clinic about your anxieties.
If you still feel unhappy, ask others with HIV or your local HIV support centre
to recommend a clinic or a doctor. Switching clinics is easier for people
in large cities where there may be more than one clinic for you to choose
from, less so for those living in remote areas with poor transport links.
In this case, switching to another doctor within the same clinic might be
your best option. Also seek advice from the Patient Advocacy Liaison Service.
What does HIV and/or its treatment do to your fertility?
I
was asked this question recently at a London group called Str8Talk. In the
absence of antiretroviral therapy, HIV has been shown to decrease a woman’s
chance of becoming pregnant or, if she does become pregnant, of miscarrying
the baby. Women with HIV have lower success rates with IVF treatments. Men
with advanced disease not on therapy have been shown to have reduced sperm
counts. No evidence about the effect of antiretroviral drugs on human sperm
production has been published. It’s possible taking potent therapy and
increasing the CD4 count will improve semen quality but there is no direct
evidence this is the case. New draft guidelines on the sexual and reproductive
health of people living with HIV from BHIVA have recently been posted on the
BHIVA website. Take a look - you have until 6 December to comment. www.bhiva.org
What if my side effects don’t improve?
A
majority of people starting therapy see an improvement in the side effects
they initially experience when starting combination therapy. If you don’t,
you should speak to your doctor about whether it is possible to switch one
or all of your drugs. We now know longer term side effects, such as increases
in blood fats or body fat changes, are best avoided in the first place. That
is great for people who started on newer, better tolerated meds but less so
for those on treatment for years using the drugs we now know have the potential
to lead to problems with extended use.
How do you see the future?
Truthfully,
with optimism. We have many new, potent, exciting treatments just around the
corner which may offer hope to people with drug resistance and the prospect
of further simplifying therapy, without (hopefully) paying a price in tolerability.
Many new classes: integrase, maturation, CCR5 as well as other entry inhibitors
are in the pipeline, alongside drugs from existing classes like protease inhibitors
or non-nukes. I’d love to see a therapeutic vaccine that could be given
safely to people living with HIV allowing us to safely interrupt antiretroviral
therapy, but not at the expense of losing the CD4 cells we gained while on
therapy.
People ask if I ever think it would be possible for HIV therapy to be contained
in a patch or implant, or if it will be possible to tailor the therapy completely
to an individual patient to eliminate side effects and choose the most potent
option. Science is bringing us closer to these objectives and I like to think
they will be possible within my lifetime.
What’s the single most important thing I can do to support my health,
aside from taking HIV therapy if I need it?
Simple
- if you smoke, give up smoking. This will reduce your risk of heart and lung
disease and help you gain weight, improve your fitness levels and save you
lots of money. If you don’t smoke, keeping yourself informed is vital,
and you are holding one of the best sources of information in your hand right
now.I would like to acknowledge the continued support of the pharmaceutical
industry, particularly Gilead Sciences Ltd and Roche Pharmaceuticals for believing
in my ability to provide treatment tours, and in the right of all in the UK
to have access to the same information to make informed choices regardless
of where they live.
