Increasingly people with HIV are overcoming needle-phobia to reach new heights
in health. Robert Fieldhouse reports
I recently attended a lunch where I was sat next to a glamorous beautician
who had diabetes. Just before we started eating, without any fuss or anyone
noticing but me, she tested her blood and injected herself in the abdomen.
It took no more than two minutes. I was hugely impressed. When I told her
I was researching injecting she asked: “Why? What’s the big deal?”
With improvements in treatments over the past decade, HIV has become less
of an invasive, and arguably a more sanitised, disease for those of us in
countries with access to antiretrovirals. We have thankfully come a long way
since people with CMV retinitis received injections directly into the eye
or were hooked up to constant intravenous infusion of anti-CMV drugs. Pill-popping
has become the norm.
But as new drugs become available and we learn more about managing long-term
infection, more and more people with HIV may be presented with drugs which
require injecting. Interleukin-2 has been studied for its ability to raise
even the most stubborn CD4 counts. Pegylated interferon is the drug of choice
for those co-infected with hepatitis C while T-20, the first fusion inhibitor,
is a breakthrough for people with HIV who have tried other classes of drugs
and experienced failure.
Our reticence about injecting in the UK may be due to our cultural attitudes
and its associations with intravenous (IV) drug abuse. Americans, by comparison,
think medicine only does any good if it comes in a syringe and vitamin injections
are big business there. Meanwhile the French don’t think a medicine
is going to be effective unless it goes up their bum. Here we address key
questions about self-injecting and speak to people on living life with the
needle.
Why can’t I just pop a pill?
Drugs like T-20, insulin and interferon are all proteins. If taken as a tablet,
they would be broken down by the digestive enzymes in the stomach, just like
food, and would not reach to your bloodstream. These meds will only ever be
available as an injection.
Aren’t side-effects worse if I inject?
With T-20 this is absolutely not the case. The payback for injecting is that
all the side-effects you have come to fear with the tablets, particularly
the nausea, diarrhoea and vomiting, occur less frequently with T-20 than with
tablet-based combination therapy alone.
Studies show that side-effects diminish the longer you are on the drug. Perhaps
this is because the drug avoids the stomach completely as it is injected,
and also it attacks the virus in a different way to other drugs; it stops
the virus from getting into CD4 cells. As a result it does not mess around
with the normal processes occurring inside our cells, so it should not hopefully
lead to an increased risk of heart disease or lipodystrophy.
In Australia a study is underway to see if it is possible to avoid lipodystrophy
if you can a take T-20 with protease inhibitors alone and avoid the nukes
all together. I asked the lead investigator, Professor David Cooper, one of
Australia’s top HIV clinicians, whether fear of injecting had made it
hard to recruit.
He said: “We had it recruited almost immediately. People would much
rather inject than get lipodystrophy.”
Interferon is a different story. It is renowned for its side-effects, and
the once-weekly injection is recommended at night, due to the flu-like symptoms
which may develop after the dose. Interleukin-2 is the same, the side-effects
can be quite debilitating, though at least this drug is only taken in cycles
of a few days over a period of weeks or months.
20 million Annual NHS spend on needles and syringes
188 million Hypodermic, insulin and TB syringes bought by the
NHS in 2003/4
1 in 65 Adults aged 15 - 44 in Liverpool, London and Brighton is an
injecting drug user
700,000 Diabetics in UK who inject insulin daily
How do I overcome my fear of needles?
Zoe Cuthbertson, an HIV research nurse at the Royal Free Hospital’s
Ian Charleson Centre, helps people overcome their fear of injecting.
“You take whatever time is needed. In time, ‘I can’t do
this, I don’t want to do this,’ becomes ‘I can do this.’
“We encourage people to involve others, like partners or friends. One
guy got his partner to inject him until he built up the confidence to do it
himself.’
“There is an element of perceived fear, either on the part of the medic
or the patient. You’ve got to confront this from a medical point of
view. If a doctor is not confident, as a nurse you have to take this on.
“Doctors at the Royal Free are open to having the nurses heavily involved
in the care. This has made all the difference. There is an element of some
doctors not knowing how to deal with the practical side. This is where nurses’ skills can be best put to work, and I am willing to invest the time.
What if my doctor refuse to prescribe me T-20?
It may be you do not fit the guidelines drawn up last year by the British
HIV Association which say T-20 should be available to people who have experienced
drugs from all three other classes: the nukes, NNRTI’s and protease
inhibitors.
If you are triple-class experienced, adding a drug from a new class such as
T-20 offers you the best chance to get your viral load undetectable and get
your CD4 count back up. Other kinds of drugs are a long way off - perhaps
two or three years for the new entry inhibitors.
Doctors may fear you will be unable to inject yourself and stick with it.
Ultimately, you are the best judge of this. Studies show patients on T-20
are just as treatment-adherent as those only on pills. This fear may mean
the drug is never presented to you as an option. A research nurse from a top
London teaching hospital told me: “Only our most senior clinicians feel
comfortable recommending it.”
But the drug is also expensive - just under £13,000 per patient per
year. NHS HIV treatment and care budgets are tight, with more people living
longer with HIV as well as more people being newly diagnosed year-on-year.
In London in the coming year there will be no increase in the funding available
to primary care trusts to spend on HIV treatment. In the UK, doctors are under
increasing pressure from trust managers to balance their books. This coupled
with anxieties over your ability to inject may mean new drugs like T-20 are
simply not discussed with you.
There is only one acceptable reason for you waiting to use T-20 right now;
that you are waiting for other drugs to add to T-20, like tipranavir, TMC-125
or TMC-114 to become more widely available to enable you to construct a potent
new regime. If you turn it down on the basis that it is injected, you could
be denying yourself the opportunity to benefit from a drug with low side-effects,
that offers you the best chance of raising your CD4 count and get you back
to undetectable, bringing back energy and quality of life.
If you are offered any injectable drug, ask your nurse if you can speak to
someone who has been there. If you feel you are a candidate for a drug like
T-20, ask your doctor about it.
Spike Rhodes
Club promoter Spike first started on HIV meds 10 years after he was diagnosed
in 1986. He has tried all the different kinds of pills, but experienced the
nausea, vomiting and diarrhoea associated with protease inhibitors. The side-effects
were so severe he became ‘pill phobic’ and would vomit after taking
the tablets. Just over a year ago, his CD4 had fallen to 15 and his viral
load was sky high. His doctor offered him a resistance test and put together
a new combo, including the soon-to-be licensed protease inhibitor tipranavir
and the newly-licensed fusion inhibitor T-20.
Spike immediately assumed he would have to inject into a vein. But his nurse
told him the injection was sub-cutaneous, into fat, as for diabetes. She trained
him to develop the confidence to inject himself. And Spike had a role model. “My mother became diabetic later in life, and she managed the injections.
“It was important I did the first injection myself.”
He has not looked back. His current CD4 is 178, his viral load is undetectable
and he is hoping for a CD4 count over 200 by the New Year. “I am healthier
now than I’ve been for eight years.” His side-effects have also
improved, “I’d rather inject myself twice-a-day than spend the
day worrying where the next toilet is”.
Laurence Gibson
Freelance journalist and pianist Laurence Gibson was diagnosed with HIV five
years ago, five days before his 21st birthday. His CD4 count was 26 and his
mother was told he would not make it through the night. Battling three Aids-defining
illnesses at once, he was put on antiretroviral therapy immediately and, after
many months in hospital, he confounded everyone’s expectations by making
a full recovery.
He has tried various combos, but none has worked well, and he has experienced
a wide-range of side-effects. Three years ago he signed up to clinical trial
studying T-20. At the start his CD4 count was 80 and his viral load over a
million. But two years into treatment his CD4 count rose to over 800, and
his viral load was undetectable for the first time since his diagnosis. At
this point Laurence took a treatment interruption, and stayed off HIV therapy
for a year, until his CD4 fell to 65 cells. He recently went back on T-20,
and in the first eight weeks of treatment his CD4 count increased again to
325 cells and his viral load is again undetectable. When talking about injecting,
Laurence proudly displays his smooth and blemish free stomach.
“I inject morning and night, everyday, but unlike the tablets which
need to be taken twelve hours apart, the injection has a four hour window
either side of the dose. This allows me to get on with normal life.”
Tony Scott
It was diabetes rather than HIV that forced Londoner Tony, 63, to overcome
his fear of needles. Tony learned he had late-onset type 2 diabetes at 51,
five years before he received his HIV diagnosis. At first he was able to control
his diabetes with pills, but two years ago he had to start self-injecting
insulin twice-a-day; 46 units in the morning and 38 in the evening.
“I was nervous. I had never done it before and don’t do recreational
drugs. The nurse showed the first time me but then it was up to me.
“But now I think nothing of it and have built it into my day. I already
take many pills for HIV (ritonavir-boosted atazanavir and Combivir) and arthritis
and I have to monitor my blood glucose with finger tip pricks after meals.
So I always carry all my equipment with me. The syringe is actually a ‘pen’ and the injection subcutaneous.
“You can inject into the bottom of your stomach or in your legs. I do
my right leg in the morning and left in the evening. That way I don’t
end up using the same place twice.”
At that’s not the end of the pricks: he also receives acupuncture to
help with his HIV and arthritis.
Martin
Martin was diagnosed with HIV in December 2001. His CD4 count was around 350.
Just over one year later he started HIV therapy, but found his first line
efavirenz-based combo hard to tolerate.
“It left me completely unable to make any decision,” he explains.
He switched, as many do, to nevirapine, and that failed leaving him with resistance.
Feeling let down by the drugs, he took a treatment interruption. In May 2003
he read about T-20 in PN.
“To my knowledge I am the only person who has gone into clinic and asked
for T-20.” By September, after a brief spell in the Royal Free with
PCP, he re-started combination therapy including T-20.
His CD4 count on re-starting treatment with T-20 was a solitary one; the viral
load was one million. Within two weeks his CD4 was 137 and a month later his
viral load was undetectable.
He had asked for T-20 as he wanted to avoid the side-effects he had found
so difficult with other drugs.
“I’d had a lot of problems with my stomach and drugs, all kinds
of drugs, not just antiretrovirals. Feeling like you are going to throw up
all day can be psychologically wearing.
“To be honest I enjoy mixing it up, like chemistry at school, and I
don’t have a fear of needles, so injecting is absolutely not a problem.”
“Of all the drugs I am on, T-20 is the one that I would be loathe to
change. It’s really important doctors don’t make assumptions about
people’s ability to inject.”
Richard
“I hate taking pills. I was diagnosed in 1991. In 1996 I was rushed
into hospital due to a reaction to anti-sickness tablets which made me lose
my sight and power of speech.
“I was shaken by that experience. I tried a couple of protease inhibitor
combinations in the late 1990s, but suffered badly with various digestive
problems. I stuck with it until 2001.”
He made more changes to his therapy and then in December 2003 stopped completely. “When the doctor told me about T-20 being an injection I said: “Not
on your life, it ain’t gonna happen”. His response was: “This
is the best of the lot.”
“I could not guarantee that I could do it, but Zoe, the nurse, sold
it to me. She spent a week teaching me how to inject, building my confidence.
My first injection was in front of her, my hand was shaking, but I did it.”
“In May when I started T-20 my CD4 count was 81 and my viral load was
almost 1 million. Currently my CD4 count is 370 and my viral load is 1,300.
Since I’ve been on T-20 I’ve had a better outlook on life; I no
longer let my meds dictate how I live.
“I wish it could have come sooner.” And what advice would he give
others in a similar position?
“Don’t deliberate, making up excuses why not to take it, get on
with it.”
James
James, the first person in the UK to begin T-20 told me ‘one of the
first times I injected was in the loo flying 36,000 feet above the Baltic
Sea in turbulence, after that I could do anything.’ For travel, the
hospital can give you something called a ‘certificate of medical need’ which allows you to travel with syringes and needles. It is best to keep the
drug with you in your hand luggage rather than check it in, in case the bag
goes missing.
• For more information on drugs like T-20 call the HIV i-base phoneline
Monday, Tuesday or Wednesday 12-4pm 0808 800 6013
Top tips about injecting
• Wait until the liquid has reached room temperature before injecting
• Rotate the injection sites
• For sub-cutaneous injection, use backs of arms, top of legs as well
as the abdomen
•l Inject slowly and spend a few minutes rubbing the area; use moisturising
lotion if it encourages you to rub longer
• Take a deep breath, then insert the needle as you blow out
• Lean into the injection so the skin is not taut
• Don’t inject below the belt line and avoid the area around the
belly button.
• If injecting into the backs of your arms, use a clothes peg to pinch
the fat.
• Use calamine lotion or a hot towel to soothe injection site reactions.
