Why is NAPWHA asking you to start a treatment conversation with your doctor? Surely everyone with HIV talks to their doctor?
Well, yes, most of us do. But some of us don’t.
Some people find out they are positive and simply don’t go back to the doctor. In clinicalPertaining to or founded on observation and treatment of participants, as distinguished from theoretical or basic science. speak they get ‘lost to follow-up’ and often don’t resurface until their CD4 count hits rock bottom, something goes horribly wrong and they end up in hospital.
Others decide to put off treatment for as long as possible. They may have had a bad experience in the past or heard that all treatments still have hideous side effects and require multiple pills taken numerous times a day.
Some people have been on the same combination and putting up with the same niggling little side effects for years. Their blood results are fine and they see their doctor regularly but they don’t like to make a fuss.
We think it’s particularly important for these people to engage more with their doctor, to update their knowledge and gain the benefits of modern HIV treatment.
For those who may not have been positive for long and who have stable CD4 counts over 500, the decision about whether to start treatment is a little more controversial.
When to start
There is a body of expert opinion favouring earlier initiation of HIV treatment. The view is that earlier treatment may prevent the damage associated with HIV replication during early stages of infection and may also reduce the risk of developing complications later in life.
In March this year, the US DHHS Antiretroviral Guidelines were updated to recommend antiretroviral therapy (ART) for all people with HIV.
The strength of this recommendation varies on the basis of pre-treatment CD4 cell count—so, those with counts below 350 cells receive a rating of ‘AI’ (strongly recommended based on data from randomisedA method based on chance by which study participants are assigned to a treatment group. Randomization minimizes the differences among groups by equally distributing people with particular characteristics among all the trial arms. The researchers do not know which treatment is better. From what is known at the time, any one of the treatments chosen could be of benefit to the participant controlled trials); those whose counts fall between 350 and 500, one of ‘AII’ (strongly recommended based on data from well-designed nonrandomised trials or observational cohortIn epidemiology, a group of individuals with some characteristics in common. A cohort study is a special kind of clinical trial which looks at a treatment or treatment strategy in a cohort of people. studies with longterm clinical outcomes) ; and anyone who has over 500 CD4 cells gets a ‘BIII’ (a moderate recommendation based on expert opinion).
In Australia, a panel of experts meets each time the US guidelines are updated to provide commentary on their application in this country. The most recent Australian Commentary, released in May, reported that a majority of the panel does not support commencing treatment for everyone with over 500 CD4 cells unless there are significant reasons for doing so.
This corresponds with the current prescribing criteria set out under section 100 of the Highly Specialised Drug Program.
The Commentary did support the US position that the decision to initiate ART should always include consideration of other conditions and the willingness and readiness of the patient to start.
As there is no randomised trial data to support treating above 500, it remains, as the US guidelines stipulate: an ‘expert opinion’. The START trial may provide some more concrete answers but these will not be available for a couple of years at least.
Treating to prevent
Since 2004, San Francisco has been engaged in a ‘test and treat’ revolution where everyone who tests positive for HIV is linked to care and offered treatment. And from a public health point of view, it seems to be working, with a decline in community viral loadA measurement of the quantity of HIV RNA in the blood. Viral load blood test results are expressed as the number of copies (of HIV) per milliliter of blood plasma. linked directly to a reduction in new infections to the end of 2009 of around 40%.
The Australian Commentary agreed with the guidelines that a secondary goal of ART is to reduce an HIV positive person’s risk of transmitting the virusA small infective organism which is incapable of reproducing outside a host cell. and that the public health benefit of being on treatment is significant. However, it maintains that the decision of when to start ART should be based primarily on the benefit of treatment to the person with HIV.
A majority of the panel wanted it noted that the results from the HPTN052 trial that showed a 96% reduction in transmission amongst serodiscordant heterosexual couples is not directly transferable to our situation in Australia where 86% of newly acquired HIV infection occurs among men who have sex with men.
That said, many clinicians in Australia today would support someone in a serodiscordant relationship (gay or straight) who wanted to commence treatment.
‘When someone goes on treatment it makes them much less infectious, perhaps 1,000 times less infectious than they would be if they weren't on treatment,’ said Ass/Prof Don Smith, head of Clinical Services at the Albion Street Centre in an interview on NAPWHA’s campaign for ABC Radio National.
‘So,’ he continued, ‘the more people who actually end up on treatment, the less new infections that there should be.’
At the launch of NAPWHA’s treatment campaign, infectious diseases physician at The Alfred, Dr Edwina Wright, summarised it like this:
‘If someone does not fit the current prescribing criteria because their CD4 cells are greater than 500, but they are convinced by what current science is saying and/or they wish to reduce the risk of transmitting HIV to their partner then I think it is perfectly reasonable for us as HIV clinicians to endeavour to commence them on treatment.’
So, while the time to commence ARVA medication or other substance which is active against retroviruses such as HIV. therapy is influenced by guidelines and governed by prescribing criteria, the ultimate decision, like many things in medicine, is very dependent on each individual situation.
Time to decide
A recent study conducted by the Australian Research Centre in Sex, Health and Society, the Tracking Changes Study, documents some of the fears and concerns that some of us have about commencing treatment.
The report includes quotes from interviews with people living with HIV, like this one: “the barrier to commence my HIV treatment was the hardest thing to work through personally. It took my doctor three years to convince me it was the right thing to do. In hindsight having now been on meds for over a year and my health at its best I wish I could have known and started them earlier . . .”
This experience is not unusual. Some of us require considerable time to adjust to the idea of starting treatment. The concern is that many of us may be waiting too long.
Recent data from the Kirby Institute reveals that many PLHIVPerson (or people) Living with HIV. This term is now preferred over the older PLWHA. have been starting treatment when their CD4 counts have dropped well below the lower recommended level of 350. According to the Australian HIV Observational Database, the median count for people starting treatment since 2006 is just 294.
In 2010, the median CD4 count of those newly diagnosed with HIV was 399 CD4 cells, which suggests that people are losing around 100 CD4 cells between the time they are diagnosed and when they start on treatment.
If it takes us time to adjust to the idea of going on treatment then perhaps we should give ourselves that time and start planning earlier. Doctors may also need to start discussing treatment options sooner after diagnosis.
While the decision of whether and when to treat ultimately falls on each of us as individuals; both decisions can be made a lot easier by starting and having ongoing treatment conversations with our doctors . . . and each other.