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Beginning treatment: issues to discuss
Current treatment regimens are less demanding than the early antiretroviral combination therapies, which could require the consumption of anywhere up to 40 pills a day at regular intervals. Some regimens also require strict adherence to dietary conditions, such as abstaining from food for one hour before taking medication. Other drugs must be taken after food. Most regimens can now be dosed twice daily and combining protease inhibitors has allowed some relaxation of the dietary restrictions and dosing schedule, commonly associated with single protease inhibitor use. Patients still need to think about the potential barriers to adherence before embarking upon any regimen.
Adherence to a regimen is essential because resistance can develop to one or all of the drugs prescribed if they are not taken at regular intervals. Trials have shown that people who missed 5% of their study medication during a 24 week period – a total of 7 days worth of medication in a 6 month period – had a high likelihood of developing resistance to the the drugs under study.
Adherence to medication regimes appears to be much more difficult in diseases where patients don't experience rapid physical consequences if they miss doses. However, even in the case of conditions such as diabetes and psychiatric illnesses controlled by medication, patients report significant difficulties in adhering to the regimen.
Reminder of infection
Many people who have no symptoms of HIV disease are likely to find it very difficult to take medication when they feel healthy, particularly if it imposes restrictions on their lifestyle. People recently diagnosed HIV–positive and considering treatment may need the opportunity to discuss their feelings regarding medication and their beliefs about drug treatment in general before they can make decisions about treatment.
Many people report that taking medication whilst they feel healthy is a constant reminder that they are HIV-positive. This experience was especially problematic when the benefits of treatment were perceived as limited in their duration. Feelings may differ if people observe significant and sustained improvements in their viral load and CD4 counts, and see such changes maintained by other HIV–positive people.
Fear of side-effects
Many people are likely to express fears about the short and long–term side–effects of the drugs they might be prescribed. Especially, negative perceptions of AZT treatment may be frequent, and clients may be especially wary of drug combinations which include this drug.
Current experience and research suggests that:
Side-effects are less severe in people who begin treatment when they are asymptomatic. Side effects are most severe during the first 1–3 months of treatment whilst the body adjusts to the presence of the drug. After that, most side–effects disappear.
Short–term side–effects such as diarrhoea, headache and nausea can be controlled by medication. Check whether it is clinic policy to prescribe this back–up medication with combination therapy.
Careful monitoring should ensure that any longer–term side–effects are picked up quickly before they become too damaging. The side effects of all drugs in current use are discussed in detail in the HIV & AIDS Treatments Directory, published by NAM.
Medication and lifestyle
Some people may have lifestyles which make it difficult for them to adhere to treatment regimens. Some injecting drug users may have particular difficulties if their lifestyle could be described as 'chaotic'. Beginning HIV treatment may be secondary to beginning methdone treatment or some form of rehab treatment. The pressure of adherence to a treatment regimen may be unrealistic for someone who has very problematic drug-using habits.
On the other hand, a regular treatment regimen may present no additonal challenges to someone who has already begun a methadone course and whose drug use could be classified as stable. Indeed, people in this position may be especially well prepared for adherence to combination therapy, and future problems are more likely to arise as a result of methdone prescribing policies (e.g. a reduction in methadone dosage, leading to chaotic drug–seeking behaviour).
Use of more than one illicit drug is frequent amongst injecting drug users and gay men. Interactions between recreational drugs and anti–HIV drugs may exist, and these could be dangerous. Clients should be encouraged to discuss their drug use, its patterns and the difficulties which drug interactions might present for them when considering anti–HIV therapy.
Interactions between protease inhibitors and recreational drugs are discussed in detail in the HIV & AIDS Treatments Directory published by NAM.
Medication and confidentiality
For some newly diagnosed people, starting anti–HIV therapy may raise particular problems regarding disclosure of their HIV status.
For example, a demanding treatment regimen may be difficult to withhold from partners, flatmates, family or work colleagues. A three times a day regimen may be difficult to disguise at work, whilst a regimen which requires people to avoid food at certain times may be problematic in many contexts. Keeping medication in the fridge may be difficult in some circumstances.
Medication may also imply to others that the newly diagnosed person is much sicker than they are in reality.
Starting treatment soon after diagnosis may accelerate the speed at which the newly diagnosed person discloses their HIV status. Discussion of how to manage this process is likely to be an important form of support.
Uncertainty over durability of treatment effects
A problem facing everyone starting therapy is a lack of information about how long the treatment effects can be expected to last.
Prior to the advent of Highly Active Antiretroviral Therapy (HAART), many newly diagnosed people arrived at an understanding about their future options which assumed that they would become ill at some point in the future, and that they should plan for a foreshortened life. Whilst this was an extremely unpalatable prospect, it did offer a degree of structure to the future.
Now the picture has changed. HAART may extend the life expectancy of the newly diagnosed very significantly, or it may not. It will take some years before we have a clear indication of its durability, and during this time many people will be encouraged to consider starting treatment.
Counselling about infectivity and antiretroviral treatment
See HIV transmission for further discussion of this issue.