Support: financial and psychosocial

Financial support

The low employment market affects all people to varying degrees living in Serbia and in Montenegro. As we have heard, PLHIV also have to overcome the additional barrier of discrimination if they want to get or keep a job. This disadvantaged access to income means that many PLHIV are now living in poverty. Anyone with a chronic illness needs to take extra care with their health. As with any chronic illness PLHIV need to take extra care to maintain their health. Some PLHIV find that they do not have enough money to maintain a good diet, which is crucial in ensuring HIV treatment is effective and in keeping well (Paton, 2006).
Sandra, who does not have the support of her family, is currently on a very low income. She is aware her health is suffering, as her CD4 count is dropping, because she can only afford to eat sporadically.

But if I go on like this [poor diet], for example in spring I could expect it to be lower [CD4 count]. And if we’re lucky enough to have something to do and find a job maybe… Then we could go on living normally… It’s very burdening. ‘Cos we’re all alone, me and him, we have no relatives, no one… to turn to when we’re in a crisis and it causes fear both with me and him. I worry because I’m ill and that’s why I consider I should be a little better off financially. If I was healthy, if I didn’t have HIV I wouldn’t worry so much. (Sandra)

This echoes Ma{an’s remark in Chapter 3 that the consequences of HIV make PLHIV feel more vulnerable and makes everything much more stressful.
Not all PLHIV are well enough to work (even if jobs are available for them) and some financial pension support is available to those entitled to it. Like others though PLHIV often fail to access it because they are unable to navigate the complex bureaucratic systems.
However there are additional problems particular to PLHIV. Firstly, it is very difficult to find information which helps you understand what you are entitled to. Many PLHIV are missing out on support because they are unaware of the specific opportunities for assistance, for example either financial or legal support.
Secondly HIV is not a static illness. There can be long periods of time when you are well and then you can quickly become ill – for short or longer periods of time. There are difficulties in managing the financial support systems when your health status is changing. Ironically whilst sadly telling someone that you are HIV can still have explosive social consequences, physically it can be very hard to tell if someone is ‘well’ or ‘ill’. So those who are too weak to work can fail to get assistance because they appear too ‘well’. Physically ‘AIDS doesn’t make you dramatic’. (Ana)
Finally HIV positive individuals have to cope with the response they get from personnel working within the social welfare system. Some personnel are still ‘afraid of me’ (Milutin).

(Milan) describes how one centre reacts to him when he comes by:

“Don’t come in, tell me what you want to know?” [while I stand] in the doorway, and: “Contact us on the phone.” And then when you go out they wipe the door handles with alcohol and then it provokes sorrow with a lot of people and all… regardless that they too know that’s not the way… (Milan)

Milan suggests that the issue is not education because they too know that it’s wrong. It may instead be about prejudicial attitudes towards PLHIV. As we suggested in Chapter four, as with healthcare workers, there needs to be a greater appreciation for the difficulties that PLHIV may be facing in every aspect of their lives and within this context how upsetting their actions and approach can be for that individual.
Milan describes a more positive experience with a social worker and what a significant difference her reaction made to him and his life.

Here, for example, from three, four weeks ago, because I should have my teeth done and my social worker said: “Well, you have the right to this, because you haven’t used this short-term assistance, because the amount is large for this…”, because these medicines hurt our teeth a lot and I said I really don’t have that much money, and then she said like: “We’ll try and apply for this…”. And she’s new there, I saw her the first time now I was there, but my file had been there from before and she called me, she contacted me, and when I saw her knowledge about the disease itself and her interest even … It thrilled me so much I said: “This is a wonder!” (Milan)

Psychosocial support

Other important forms of support that PLHIV need are psychosocial, advocacy and legislative support.
An analysis of the Non-Governmental Organisation (NGO) situation is available in our previous report (Bernays et al 2007). The stability of the NGO community is improving: although short term funding remains a concern for the stability of organisations.
Many PLHIV feel that it is important that they are included in NGO and support activities, not only as beneficiaries but also as service providers. For example in training conducted around HIV, PLHIV have considerable expertise from their experiences and this needs to be acknowledged and better utilised. Increasing their inclusion in community activities enhances the ability for others to understand the realities they face. It also counters the marginalisation brought about by the societal or anticipated prejudice towards PLHIV.
A few of the individuals included in this booklet are working in HIV NGOs. Here are a few accounts of what this means to them.

Really, it moves me and when you know… You tell someone there, they had a problem and they say: “You try.”, then when you also resolve that problem then you’re happy and they’re happy and then it gives me even more potential that I can do something for myself too. (Milan)

But alright, these are some things that are very important for living with HIV. When someone who’s been through it themselves tells you about this support, it’s a bigger thing, than when you’re reading about it in the newspapers, when you’re sceptical. When you hear it live… It’s not like it solves the problem for you, but you approach it differently. (Ana)

I think that by being active I’m fighting for human rights, my immune system’s improving, but I’m involved and I live like normal people, and it’s there I can see myself, that’s my thing, I want to live as long as I live… (Stefan)

It feels good that I’m somehow equal to all these people who are professionals: there’s a doctor infectologist, then another doctor who works with these younger children with an NGO, then there’s the doctor who’s chief of transfusion there, then there’s… I consider them professionals involved in all this. I’m not saying I’m underestimating myself now, but it means a lot that you’re being accepted, that they plan all these things with you. (Milena)