This edition of HIV Weekly is a little different. It includes two first hand testimonies from HIV-positive people writing about their experiences of everyday life with HIV. In the first, Edwin describes what he went through, and what it felt like when his viral load became undetectable. There’s also Alan’s account of his experiences of starting HIV treatment. Finally, an anonymous writer tells of her experiences adopting and caring for an HIV-positive baby.
In contrast to recent weeks, there was relatively little HIV treatment news published in the last week for inclusion in this edition of HIV Weekly. Nevertheless, three interesting studies were published recently falling into the following categories:
- Starting HIV treatment: People who started potent anti-HIV therapy very soon after infection with HIV are still doing well on their HIV treatment five years later.
- Resistance testing: A new study finds that resistance tests can be highly accurate, even if a person has a viral load below 1000. A viral load of 1000 had previously been thought to be the lowest level needed for resistance tests to be reliable.
- Children and HIV treatment: HIV therapy is most effective in children if it is started before they are five months old.
In addition, news emerged that five people enrolled into clinical trials looking at the safety and effectiveness of the experimental anti-HIV drug vicriviroc had developed cancers. However, a relationship between the cancers and the experimental drug could not be established at this time.
Starting HIV treatment
It is currently recommended that HIV treatment should be started by anybody who whose immune system is so damaged that they are at high risk of developing a potentially life-threatening HIV-related illness, or are already ill because of HIV.
However, it’s still not known for certain when the best time to start HIV treatment actually is. The current recommendations are very much a “best guess” based upon research findings so far and from the experience gained through the everyday use of anti-HIV drugs.
Thoughts on when is the best time to start anti-HIV treatment have changed since potent HIV therapy first became available in 1996. Around that time some doctors, particularly those in the US, said that HIV treatment would achieve the best results if started when a person still had a high CD4 cell count – ideally no lower than 500. This approach was called “hit hard, hit early” and some doctors even hoped that long-term use of potent combinations of anti-HIV drugs would be able to completely eradicate infection with HIV.
Many doctors and people with HIV adopted a much more cautions approach to treatment. Arguments in favor of early treatment were being countered by increasing evidence that long-term use of anti-HIV therapy could not cure HIV, but could result in side-effects such as lipodystrophy; and that HIV treatment required an extraordinarily high level of adherence which many people found difficult to maintain in the long-term.
Doctors monitored these people for five years. Before they started HIV treatment they had an average CD4 cell count of almost 500, well above the level where the initiation of HIV therapy would normally be considered. CD4 cell count increased to an average of 700 after a year of potent HIV treatment and was 842 after five years. Viral load was undetectable in 91% of people after a year’s treatment and 97% after five year’s therapy.
However, 11% of people had problems such as diarrhoea or nausea because of their HIV drugs, 7% had increased blood fats such as cholesterol, and 4% had kidney problems and 4% rash.
The doctors who conducted the study concluded that early treatment was safe, suppressed viral load in the long-term and preserved immune function. However, they note that these findings should be balanced against the risk of side-effects, the risk of resistance and the impact of early treatment on quality of life.
In the UK, it is currently recommended that treatment during the very first stages of HIV treatment is only offered within the context of a clinical trial.
Resistance testing
The aim of anti-HIV treatment, particularly in people who are taking it for the first time, is to get viral load to undetectable levels and keep it there.
However, many people either never achieve an undetectable viral load or experience a rebound in their viral load to detectable levels over time. This is usually because HIV is resistant to some or all or the HIV drugs being used and before prescribing any new anti-HIV drugs doctors should use a resistance test to see which drug or drugs HIV is resistant to.
Genotypic resistance tests are a key resistance test and look for changes in HIV’s genes which make the virus resistant to HIV drugs. It had been thought that the results from these tests were only accurate if a person had a viral load above 1000.
Keeping a person on an HIV treatment combination until their viral load increased to 1000 could mean that they developed a lot of resistance to anti-HIV drugs. Therefore doctors at the Chelsea and Westminster Hospital, the largest HIV treatment centre in the UK, looked at the results of over 100 resistance tests to see if it would have been possible to accurately test for resistance when a person had a lower viral load.
All the people in the study were taking HIV treatment but nevertheless had two consecutive viral loads above 50 but below 1000. The doctors found that it was possible to accurately detect resistance in 70% of people who had a viral load between 50 – 200; 90% of those whose viral load was between 200 – 600; and, 93% of those with a viral load between 600 – 1000.
When they analysed the results of their study further, they found that resistance testing was most accurate for people with a viral load between 200 – 1000. They recommended that all people with a viral load above 200 should have a genotypic resistance test, as should people with a persistent viral load below 200.
Children and HIV treatment
HIV treatment can mean a longer, healthier life for HIV-positive children. However, as in adults, there is still debate about the best time to start HIV treatment in children.
In the UK, it is currently recommended that anti-HIV treatment should be started if they have a 10% risk or greater of becoming ill because of HIV. It is possible to calculate risk here.
It is also recommended that children start HIV treatment before their immune system, measured by their CD4 cell count, is damaged to such an extent that they are vulnerable to serious, potentially life-threatening illnesses. In adults this is when the CD4 cell count falls to about 200. In children the numbers are different. In infants aged under twelve months, a CD4 count of 750 is equivalent to an adult count of 200. The figure is 500 for children aged one to five. After the age of six, as in adults, a CD4 cell count of about 200 indicates severe immune damage and treatment should be started. Some centres use the CD4 count percentage as a guide.
When considering when to start treatment in children doctors also have to consider the risk of side-effects, the likely need for life-long treatment, the need for high levels of adherence, and the risks of drug resistance.
The study included children infected with HIV since 1986 – a full decade before effective anti-HIV treatment became available. Almost a third of children received HIV treatment consisting of just a single drug, and a further 40% were treated with only two drugs before switching to more potent three drug combinations.
Nevertheless, the researchers found that children who started HIV treatment in the first five months of life were much more likely than those starting treatment later to experience a substantial increase in their CD4 cell percentage.
The doctors point out that children who received treatment aged under five were effectively receiving therapy during the “primary infection” period which some doctors believe results in a better response to treatment has HIV has had less of an opportunity to damage the immune system.Vicriviroc
Vicriviroc is an experimental anti-HIV drug which belongs to a class of drugs known as CCR5 inhibitors. The development of this class of anti-HIV drugs has encountered a lot of problems.
Now, it has been reported that five people enrolled into a clinical trial into the safety and effectiveness of vicriviroc have developed cancer. Four people developed lymphoma and one patient developed stomach cancer.
The study involves people who have taken a lot of anti-HIV drugs before and is comparing two doses of vicriviroc combined with the most effective (or “optimised”) anti-HIV drugs selected by resistance testing against a dummy placebo pill combined with optimised anti-HIV drugs.
The review board for the study concluded that there was not enough evidence to show a “causal” relationship between vicriviroc and the development of the cancers and point out that all the people who developed cancer had “severely advanced HIV disease”.
The study into vicriviroc is to continue but there will be more intensive monitoring of people enrolled onto it.
Living with HIV
In late 2004 NAM published Living with HIV, a book providing basic information on all aspect of life with HIV. It contained first-hand testimonies from people telling how they had responded to day-to-day life with HIV.
Work on the next edition of Living with HIV is being finalised and it includes many new testimonies. It will be published in the early summer of this year. Below is a selection of testimonies from the first and second edition. If you’d like to see your experiences of HIV in print email michael@nam.org.uk. You have until the end of March 2006 if you’d like to see your work published in the next edition.