Irish Haemophilia Society 26th February 2016

A recent visit to the local hospital brought home to me, once again, how lucky we are with our health system, however creaky it may be at times. One of our Outreach women has been in and out of hospital for the last few months and she is currently in a very large ward with 39 other beds. The room wasn’t well lit, the bed old and the gap between the patients narrow. And over here, it’s largely family members who tend to all of the personal care of the sick person, hygiene, clean clothes etc. The ward nurses administer IVs, distribute any medication (leaving it on the table rather than ensuring the patient takes it) and seem to sit in their offices a lot, looking at their phones. The one nurse I know says she has a lot of paperwork to do but it must all be smartphone friendly. Family is a huge thing in this region and parents, children, cousins, grandparents and grandchildren are often the ones looking after hospital patients. On the rare occasion that no relative, however distant, can be found, someone will take some care of the patient, but only to the most basic extent. Kate has come across patients lying in extremely dirty sheets, with undressed bed sores and in a lot of distress.

The woman we were visiting is only 20 years old. Bob was HIV positive at birth and her mother died a few years later. She was once a resident of Sarnelli House but left after falling in love with a boy. This happens rarely, girls running away with boys but once they’re 18, there’s not a lot we can do to stop them. Bob had a baby last year (whether it’s with the same boy or not, I don’t know). We don’t yet know the infant’s HIV status. But Bob stopped taking her ARVs and got very sick very quickly. Last autumn, she developed TB and shed a load of weight. Her skin became infected as well and she had to return to Sarnelli House to be quarantined and looked after. She was desperate to leave as she wanted to be with her boyfriend (whose mother was minding the child). She got a little better and went home but is now sick again, this time with pneumonia. She had stopped taking her ARVs again.

The reluctance of some of the older teenagers and young adults here to continue taking their medication is becoming a bit of a problem for us. There are many factors at play. Some think as that they feel fine now, they have no further need to be on an inconvenient drug regime, sometimes one with harsh side effects (the ARVs available here are early generation drugs). There are a few who stop the tablets through laziness or as an act of rebellion - they are teenagers after all. Others might think that taking these drugs makes the illness all the more real. For a growing number, it is a matter of shame and secrecy. Maybe they are in a dormitory at university and don’t want their new friends to know that they are HIV+ or worse, they could be in new relationships and haven’t disclosed their HIV status to their new boyfriend or girlfriend, fearing they might be rejected. Bob has a new baby and one would think she has something to live for. But many of the youth in this area seem to lack the aspiration we see in young people at home. The grinding poverty of so many, the absence of parents or other role models, a dreadful education system, a culture of acceptance of one’s lot, whether this mentality is Buddhist or Thai or to do with generations of poverty or a mixture of many factors, are all in evidence here. Whatever the reason or reasons, the last year or so has seen five or six of our kids, some of who have left Sarnelli to make their own way, presenting with this issue. There is a feeling within Sarnelli that perhaps more attention should be paid to preparing the departing young adults for the world outside, such as budgeting, diet and nutrition and personal responsibility. It has only been in recent years that we have had these young ‘graduates’ and the focus was on getting them to this point rather than preparation for the real world.

So last Saturday, we held a meeting for all of our kids with HIV. We currently have about 50 living with us. Kate talked to them about why we were there that day and how lucky we were to have them here with us at Sarnelli House. The Thai way of talking to kids, errant or not, is a hectoring one, with loud voices and worst case scenarios painted. Kate turned it around to them, asking them what was hard for them about maintaining their drug regimens and what we could do all we could to help them. The looked a bit surprised! Then we distributed sheets of paper and pens and asked them to write any question they had about living with HIV they could think of, but not to write their names on them. Everyone asked a question, some of them incredibly basic, such as “What is HIV?” and “Why do I have it?” to some about maybe becoming a parent some day or issues regarding disclosure. It may come as a surprise that this has never been done before. There have been seminars but they are always very large and Thai-led and they tend to talk down to the kids, who invariably switch off. We now have a whole host of interesting topics to hold smaller group sessions but this time, on their terms. So, we’re very excited about the coming year in this area. Now we just need to fund it all! And of course, a lot of things I learned from the excellent IHS weekends will be extremely useful in conducting any programmes.

ZIKA VIRUS – IRISH HAEMOPHILIA SOCIETY POSITION STATEMENT