Facilitators: Susan Cole, Robert Fieldhouse, UKC and Simon Collins HIV i-base
Rapporteur: Annie Temba, UKC
Introduction
The workshop began by introductions from the participants. The participants informed each other about when they were diagnosed, type of treatment they were taking and their experiences with the treatment. The group reviewed what had been discussed in the morning session and were asked to suggest the issues to be discussed in this session. Thus the participants set the Agenda for the session.
Agenda
The Agenda for this workshop mainly dealt with issues relating to treatment. The following were the issues that were identified for discussion;
Care and access to care
Drug resistance
Risks of re-infection
Changes in body shape
Where to go when ill
Care and access to care
It was emphasised that the relationship between the doctor and patient was very important in the process of treatment. The standard of care differed from hospital to hospital and it is generally true that the more experienced the doctor was the better the treatment. It is still important to take an active interest in your care though. Sometimes the more experienced doctors have less time to spend with each patient. Some tips for people living with HIV include:
It is important to have a doctor that you develop a relationship with, so that you are free to express your views on the treatment
Everyone has the right to change their doctor if not happy
Some people may want to get a bit more information on the doctor and the drugs recommended before making any decision
Meeting others in a similar situation to find out how they are managing can often be helpful
Drug resistance
On this issue the group was informed of the importance of having a drug resistance test before commencing treatment. If someone is infected with a drug resistant virus, this may still be detected several years later, depending on how long the person has been infected. Some resistant virus drops to levels that are too low to measure in a resistance test within a few months. The earlier a test for resistance is carried out the better the opportunity of having it picked up. Resistance can develop as a result of being infected with resistant virus, or if the HIV combination is not strong enough to reduce viral load to undetectable (less than 50 copies/ml) or if someone regularly misses or is late taking medication (not adhering). Resistance is the only thing that can stop HIV treatment from working.
It is recommended that everyone ask for the resistance test to be done whether they were diagnosed some years back or recently because some resistance may disappear quickly while others may be long lasting. Even for those not on treatment, it may be necessary to take the test because the results could be used later when treatment is started.
The importance of adherence in relation to resistance was also highlighted. A certain level of drug content in the blood needs to be maintained to avoid resistance. If levels are too high the risk of side effects increases; if they are too low the risk of developing resistance increases. This also relates to following any dietary restrictions with the medication.
Risks of re-infection
There have been increasing reports on re-infection but it is not clear how often this occurs as it is difficult to study. However, the importance of the viral load was stressed when looking at risk factors because this would help people consider the risks involved in relationships – the higher the viral load, the higher the risk of transmission in all circumstances. For example someone on treatment with an undetectable viral load who has no drug resistance and who is re infected by someone with multiple drug resistance could find that his or her treatment stops working. On the other hand at a different extreme, two monogamous partners with the same HIV resistance profile and treatment history, who have not been using condoms anyway for several years already, would not gain any benefit from starting to use condoms now.
Changes in body shape
Changes of body shape were either fat loss (in arms, legs, face) or fat accumulation (abdomen, shoulders, breasts). Fat loss is generally caused by certain drugs (like d4T), which are no longer first line drug regimes. Fat accumulation is more difficult, but higher awareness should make it easier to change treatment when symptoms occur. Information can be found from websites, helplines, newsletters etc.
Where to go when ill
The question of where to go when ill (whether the GP or the GUM clinic) was raised. In most cases experience has shown that GPs sometimes refer people back to their HIV clinic if there are any complications that they are not experienced with. Some HIV clinics were now providing less non- HIV treatment because of costs, however as it is a right to have HIV treated anonymously at a GUM clinic, anything that relates to HIV has to be provided by that clinic. People have to give permission for the HIV clinic to contact their GP.
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