T-20 (Fuzeon®) or enfuvirtide) is the first
HIV drug that has to be injected, though it will not be the last. What’s
it like to depend on an injectable therapy? James Locke, one of the first people
in the UK to use T-20, tells his own story and interviews other users of the
drug
In 1996, combination treatment using three classes of drug started making it possible to survive HIV. However, the failure to suppress viral replication completely and problems with toxicity, adherence, and resistance to drugs has made the battle against HIV a much more complex challenge than was previously thought.
T-20 (licensed for sale as Fuzeon in 2003) was the first of a new class of
antiretrovirals known as the HIV fusion inhibitors. A subclass of a broader
group called entry inhibitors, it works by preventing HIV ‘injecting’ its
genetic information into the CD4 cells it likes to infect.
T-20 is a peptide: a long string of 36 smaller molecules joined in a chain.
This means it can’t be digested and can only be taken as an injection
subcutaneously (under the skin) twice a day. This obviously presents new challenges
when it comes to daily adherence.
 James overcame needle-phobia to take T-20 |
I was diagnosed HIV positive in 1984. I was originally given three years to live, but am now in my 20th year with HIV. In 2000 I started to show failure to my combination therapy. My CD4 count ended up at 16 and my viral load at 1.3 million. My future looked uncertain, to say the least.
In April 2001, I was the first person in the United Kingdom to enter the TORO T-20 trial of T-20. I believe that this drug has revolutionised the quality of my life. My current CD4 count is 250 and my viral load has remained undetectable since adding T-20 to my combination drug therapy.
In a culture of ‘needle phobia’ the way T-20 has to be self-administered may result in patient and doctors worrying about the process of self-injecting. “How can injecting twice a day improve quality of life?” “I am prepared to wait for a pill” and “Patients will not inject” have been heard from both patients and health professionals when it comes to T-20.
So little has been written about T-20 that I was keen to share my experience of this new treatment with other patients and see how they coped with any fears surrounding injecting as well as what impact this treatment had on their quality of lifestyle.
 Spike too overcame needle-phobia to take T-20 |
Spike was diagnosed with HIV in 1986. He is a club promoter and former contributor to Positive Nation and lives with his partner in London.
Spike remained relatively healthy and well until 1996/97 when he started antiviral treatment, not long after losing his partner of seven-and-a-half years to Aids.
It seemed that with every treatment Spike tried, he always had to endure side effects. He suffered from stomach cramps and diarrhoea that really had a major impact on his life. The drug schedule was very rigid.
“ The pills had to be either taken at a certain time, or with certain food, and I felt as though I never got it right. I found the pill combination unforgiving and ended up going to my doctor and asking if there was such a thing as ‘pill phobia’.
“ I began to feel depressed and started to resent my treatment and the effect it was having on me. So I stopped taking it regularly. It led to the HIV in my body developing resistance to the drugs. It was just like waiting for this new juggernaut to come around the corner and mow me down.”
In 2003 Spike was offered T-20.
“ I shuddered at the thought of using a needle. My initial response was that my doctor was asking too much and I would wait for a better pill to become available.”
But Spike soon realised that this treatment was the only real option open to him and, with his health deteriorating, he decided that he was going to confront his needle phobia.
“ The more I learned about the technique the more comfortable I became with mixing T-20. It was fascinating; for the first time in my life I felt I had control over my condition. I faced a huge fear and conquered it!”
Spike’s current partner has been very supportive and has even learned to do the injections for him. The only side effect he has had is reactions on his skin from injections. These are generally very mild and tend to disappear within 48 hours.
“ It is only a small bump and if I rub the skin straight after injecting, it stops it from appearing.”
Taking T-20 has not had any real affect on Spike’s lifestyle.
He has experienced no difficulties in travelling with his medications. During a recent trip to Sicily, Spike injected himself on the boat and at the airport.
Before T-20, Spike’s CD4 count had been hovering between 20 and 30 with a high viral load. His current CD4 count is 80 and his viral load has remained undetectable. He says: “I believe that you always have to be optimistic about life; there is always someone worse off than you.”
Fiona was diagnosed with HIV in 1990 and lives in Scotland with her partner. She had only been married for a short while when her partner became very sick and was diagnosed with HIV. Sadly, he died not long after she was diagnosed.
“ Initially I did not use any services from the hospital. But in 1996 I became very ill with pneumonia and an eye infection.
Getting used to taking so many pills at the start of my treatment was very hard. I was not told very much about the importance of taking the pills in a timely manner, and how not doing this can easily lead to drug resistance.
“ At one point I was taking 36 tablets a day, and as I was working shifts at the time it was difficult to construct a routine. I experienced upset stomach, a common side effect of the oral drugs, and also peripheral neuropathy that meant it was sore to stand on my feet.”
About three years ago Fiona started showing signs of treatment failure. “When the doctor offered me the chance of entering the T-20 trial, I was eager to accept, as there was little else on offer. To be honest, I didn’t think it would work for me.”
Fiona works as a health professional so she was not worried about the injecting aspect of taking T-20: “I found it easy to get used to and I really needed something new.” She administers most of her injections and gets her partner to inject those hard to reach areas such as the back of the upper arm.
Within a relatively short period of time, Fiona’s CD4 count started to increase and now stands at 700. Her viral load is now undetectable for the first time ever.
“ I feel my condition is more manageable. It has made me feel a lot more confident about the future. T-20 has brought me time and I can now look ahead and plan for the first time in 10 years.”
David was diagnosed with HIV 10 years ago and lives with his partner in South East England. After diagnosis, his weight plummeted from 11 to eight stone. He spent the next few months in hospital, not realising how close to death he was.
“ I felt shocked and confused. The symptoms had appeared so quickly and didn’t follow the ‘timescale’ that my friends with HIV had experienced.”
The years following David’s diagnosis were extremely difficult. He tried numerous drug combinations but his quality of life was constantly compromised by infections.
“ I was taking 50 pills a day, and that was further complicated because I had oral thrush. It could take up to three hours to swallow my pills; it was like swallowing pieces of glass. The whole process was demoralising and distressing.”
He was eventually diagnosed with cytomegalovirus (CMV) that was treated by 180 injections into the eyes over a two-year period. He did lose the sight in one eye and is visually impaired in the other. He would have lost his full sight if he refused treatment.
In 2000, David was also diagnosed with non-Hodgkin’s lymphoma. There really was no quality to his life, he admits.
“ Everything had to be planned, even making a cup of tea. I would sit in my chair and think: ‘Do I really want this cup of tea. Is it worth the effort?’”
By 2001 he had exhausted most drug combinations available to him. It was in May 2001 that he first heard of T-20 from his doctor.
“ I just had a positive feeling that this treatment would work for me. I really wasn’t concerned about the injections, I had overcome having injections in my eye so the thought of injecting my arm or elsewhere on my body really wasn’t a concern. My only hurdle was my visual impairment.
“ But within two weeks of injecting T-20 I knew my new combination of drugs was working. Friends started to say how well I was looking.
“ I started to taste food again and stopped my anti-fungal medications. My energy levels returned and for the first time in many years my CD4 count started to improve. In my wildest dreams I didn’t believe that I would ever reach numbers like this again.” His current CD4 count is 250.
As David’s health improved he was able to consider returning to near-normal lifestyle that many of us take for granted.
“ T-20 has given me a quality of life I didn’t expect to see again. A social life, meeting friends without the embarrassment of facial disfigurement and without having to know where the nearest toilet was in case there was an accident!”
You take T-20 by injecting yourself twice-daily with a small-volume subcutaneous
injection. Most of us shudder at the thought of self-injecting; however,
my own personal experience and those of Spike, Fiona and David have shown
that after the initial injection, our fears are dispelled.
After all, there are over 575,000 people living with diabetes that have to inject insulin every day in the UK.
And Dr Graeme Moyle of London’s Chelsea and Westminster hospital has found that patients soon get used to the idea.
In an article he writes: “Personal experience with HIV-infected persons has been that injectables are readily accepted when the patient is well educated about the therapy...enfuvurtide [T-20] is by far the best tolerated of daily injectables and a simple and well-tolerated injection may be more agreeable than yet more pills”.
It would be irresponsible to say that T-20 would benefit everyone, as we all respond to treatments in a different way. But it would be a pity to dismiss T-20 over fear of self-injecting without being informed.
James Locke is currently recruiting people living with HIV that are on or about to go on T-20 for a Positive Self-Management Course in London. It’s free of charge; contact James on 07793 314 672.
