In this section, we give some real examples of how NYAA has been able to support people living with or affected by HIV. Names and some details have been changed to protect the confidentiality of the people concerned; nonetheless, the sequence of events described in the case studies is broadly correct and is representative of the services that NYAA can and does provide.
Case sudies on this page include the following; you can jump to them by clicking on the headings below:
A, a white male in his mid-40s, was diagnosed HIV +ve after a period of illness. He was diagnosed “late” – that is, his CD4 count was below 200 when he was diagnosed, so his immune system was weak, and he was open to opportunistic infections. Indeed, almost immediately after his diagnosis, A was admitted into hospital with PCP, a form of pneumonia, and spent a week in intensive care, and many more weeks on the ward.
A was shocked and alarmed by his diagnosis, and became clinically depressed. When he was on the ward, he was put in touch with NYAA, and one of their team came to visit him in hospital. This contact proved to be very helpful for A – although the doctors and a very helpful specialist HIV nurse had told him about the basics of HIV treatment, A was still emotionally very vulnerable. NYAA was able to provide immediate support, by giving A someone to confide in and share his concerns with. NYAA was also able to support A by helping him get counselling with someone who specialised in HIV. NYAA was also able to introduce A to other people in similar situations – a peer group – and this also was of great help – A realised he was not alone, and was able to share experiences and learning from other people living with HIV. This helped A greatly, and he was able to overcome his depression and return to work.
Learning points: Early contact by NYAA with people who have been recently diagnosed can be very helpful. NYAA was able to provide emotional support, initiate peer support, and signpost the need for professional clinical psychological support.
B, a white male, had been diagnosed in the late 90s. His HIV treatment proved to be complex – his initial HAART regimen was unsuccessful, and resistance developed. Furthermore, B suffered from many side effects (remember, this was in the late 90s, using older drugs that are rarely used today). Some of these side effects, such as nausea and diarrhoea were manageable with medication. After some years on HAART, though, B was still not doing well – although his viral load was under control, his CD4 count remained stubbornly low – below 200 – leaving B vulnerable to opportunistic infections. B also felt that his HIV clinician was not taking his concerns seriously – B had recently become very fatigued, and was having pains in his feet and legs. B felt that the doctors weren’t taking these issues seriously; it was almost as if they were saying “Your viral load is OK, and you’re bound to feel a bit tired on drugs…what are you complaining about?”
B shared his concerns with NYAA. Although NYAA has no clinical background, and cannot provide clinical advice, they do have a good understanding of many of the treatment issues, and can help people understand the basics of HIV and its treatment. In B’s case, though, there were complex clinical issues. NYAA was able to put B in contact with i-Base, an organisation that specialises in HIV treatment, and provides informed, independent treatment advice. NYAA also introduced B to UK-CAB, a group of HIV treatment advocates. As B learned more and more about HIV treatment, he was able to question and challenge his clinicians more effectively, and became confident enough to say that his HIV treatment was inadequate. He changed his HIV clinicians, going to a larger, teaching hospital. Here, working with his new clinicians, B’s symptoms were taken seriously and work was done to find the cause of them. It became clear that B had drug toxicity leading to fatigue, and another HIV drug was causing peripheral neuropathy. When B’s drug regimen was changed, removing older drugs and substituting them with newer drugs with better side effects profiles, B’s fatigue went away, and his CD4 count rose steadily to over 600. Unfortunately, the damage done by peripheral neuropathy cannot be undone, so B still suffers from painful feet and legs – but at least it now would not get any worse.
Learning points: NYAA can help people living with HIV understand more about their condition and treatment, though of course NYAA can not give clinical advice. However, NYAA was able to signpost B to to organisations focussed on HIV treatment, and was able to help B develop the knowledge and confidence to ask challenging questions to his clinicians about HIV treatment, and helped B to transfer his treatment to another HIV unit.
C, a divorced, black African woman, was diagnosed HIV positive after an illness. She was very concerned about the impact that this might have on her family and friends, and found it very helpful to be able to discuss issues around disclosure with NYAA. In the event, she decided not to disclose her HIV status to anyone except her clinicians – she was concerned about the impact on her teenage children, and her only other close relative nearby, a brother, was nursing his wife though a terminal illness, so she did not feel she wanted to burden her brother with more worries.
After some time, C needed to go to hospital for a minor operation. C was normally very independent, but this day unit surgery required that someone collect her from the unit and stay with her for 24 hours. It would have been difficult for any of C’s family to do this without getting into details about her HIV condition,. NYAA was able to provide transport and appropriate support post-surgery, so that C’s fears about disclosure to her family were resolved.
Learning points: NYAA is about to offer help in thinking through disclosure isses. NYAA can also offer practical support, such as taking people to and from hospital if necessary, and no other suitable means can be found.