The session opened with everyone introducing themselves, explaining when they had been diagnosed and telling others a little bit about themselves. There was a wide variety of background and experience in the room. Whilst many had experienced difficulties and rejection, there were also many encouraging testimonies of how people had prospered under effective treatment and had learned to talk about their status with friends and family, receiving support and understanding.
A number of issues of concern were raised:
Starting treatment - Issues included when to start treatment, whether it was possible to take time off work, relations with one’s pharmacist, how to support adherence to treatment (pill boxes), and the problem of phobia of taking pills. The issue of adherence was of particular concern.
Side effects - This was obviously linked to the question of starting treatment. There was concern over body changes in particular and how to cope.
Disclosure - Side effects brought us to a discussion of disclosure. Severe side effects were more difficult to hide from others. What were a person’s rights to confidentiality in healthcare settings and in the workplace?
Relationships - Disclosure was a very important question when it came to starting relationships. Linked to that was the question of ‘sero-discordant relationships’, in other words a relationship where one person was HIV negative and the other HIV positive. Isolation was mentioned as a real problem. This widens the question of relationships from the sexual relationship to the broader issue of friendships and support networks.
Pregnancy - Linked to the relationships question was that of pregnancy, and of how to conceive and give birth without transmitting the virus to partner or child.
Oral sex - Information was needed on safer sexual behaviour. For example, how safe was oral sex?
Late diagnosis - What were the implications of late diagnosis for treatment and prognosis?
Criminalisation - There was particular concern over the recent convictions for ‘reckless transmission’ of HIV, and the implications for disclosure.
In the time available only a few of these issues could be addressed in discussion. The disclosure issue was dealt with by a number of those in the room giving powerful testimonies of how they had become empowered to disclose their status in appropriate circumstances, e.g. when beginning to ‘date’ someone.
One subject covered in some depth was that of pregnancy. There were three ways that HIV could be transmitted to a baby – in the womb, during delivery and during breast feeding. There were, however, effective interventions to significantly reduce risk of transmission, including a course of nevirapine, caesarean section and the use of baby milk formula.
If the father was positive and the mother negative, sperm washing can be used to prevent transmission to the woman. In cases where the father is negative and the mother positive, IVF can be used to achieve conception without risk of transmission to the man.
Criminalisation was also a topic which provoked interest and controversy. Some felt there was a considerable element of racism involved in the fact that all three convicted in England were black Africans. Some had been warned about prosecution for reckless transmission by clinicians or sexual health advisers. Some felt in certain circumstances prosecution was justified whilst others were against criminalisation. There was certainly a need for clarity as to what the law says, and what the legal obligations are for people living with HIV who are having sex.
Move on to Looking After Your Health Group 2