Recommendations and conclusion

HIV treatment:

In Serbia treatment availability has improved, but some problems remain.
The treatment situation has improved a good deal since 2004/2005, when we found that there were frequent interruptions or treatment changes due to treatment shortages. Whilst there are still sporadic shortages of particular drugs, treatment supplies in general have become much more stable. PLHIV still remain anxious about their supplies: as their lives directly depend upon consistent availability.

In Serbia irregular monitoring testing is a serious problem. This may undermine the effectiveness of treatment and is a cause for concern.
Not being able to monitor the efficacy of treatment and the condition of patients makes the effective treatment of PLHIV much more difficult. PLHIV almost universally find this a cause of stress and anxiety- as though they are feeling their way in the dark.

New clinics opening in Serbia
New clinics are opening in Novi Sad and Nis for PLHIV living in these areas. Our research shows that there is a great need for these clinics and not having to undertake the journey to Belgrade, with all the difficulties this can involve, is likely to be a very positive development for PLHIV in these regions. We hope that patients visiting these clinics will be treated with appropriate care and the necessary confidentiality.
The clinic in Belgrade continues to be regarded as a source of good care and support with committed staff working well given constraints of equipment etc.

Montenegro delivers treatment to patients post Independence
Significant progress has been made towards providing access to full HIV treatment and care for PLHIV since Montenegro became independent. There are some cases where patients receive all of the necessary treatment, however some patients have reported experiencing inconsistent availability of drugs in Montenegro. Monitoring tests are available regularly.

Recommendations:

• Implement data management software which enables more efficient management of treatment procurement, delivery and need to reduce incidence of shortages.
• Urgent action is needed to add reagents for monitoring tests to the positive list in Serbia.
  
• Ensure sufficient support is given to the training and development of the new HIV clinics/ wards to ensure appropriate levels of expertise, efficiency, confidentiality and trust. This also applies to local pharmacies who may be dispensing HIV treatment.
  

Access to healthcare:

Direct discrimination reduced.
Over the course of the study reports of direct discrimination of PLHIV by healthcare workers have reduced. Some individuals continue to encounter problems in accessing primary health care, dentistry, surgery and gynaecology. PLHIV reported finding it very difficult to demand their rights to be treated and are extremely upset by receiving such poor care from medical professionals.

Indirect discrimination is common.
Indirect discrimination was found to be very common in the experience of participants. Doctors and nurses often do not refuse treatment outright but make excuses about equipment or time availability; or refer them onto another colleague in order to avoid having to treat them; or in some way treating them more harshly than another patient without HIV. This was a source of immense frustration for some individuals as it is so much harder to explicitly address this more slippery form of discrimination.
Personal or recounted experience of discrimination have made some PLHIV very anxious about seeking healthcare outside of the HIV clinic. Many individuals anticipate a negative reaction. This may result in the behaviour of healthcare staff being interpreted as discriminatory when it may in fact be more to do with workload or manner. Medical staff therefore need to be sensitive to the context in which PLHIV are managing their illness and always act professionally. If they frequently encounter harsh responses, more effort may be needed to show that they are open to and considerate of the situations faced by PLHIV when they come to them for care and support.

Recommendations:

• Support training of healthcare workers on the situations faced by PLHIV to sensitise them to their behaviour and the needs of PLHIV. In particular emphasising the influence they have in providing a positive example to the rest of society about how to treat PLHIV.
  
• Medical personnel need to be made more accountable for their actions. Mechanisms for reporting cases of unprofessional behaviour by medical personnel need to be made clear, simple and confidential.
  
• Legislation to address indirect discrimination and for healthcare workers to take responsibility. If they are unable to treat PLHIV for legitimate reasons, to provide patients with a viable alternative.
  

Support: financial and psychosocial

Access to employment is severely hampered by an HIV diagnosis. For a minority this may be because they are not well enough to work. For the majority this is because of discrimination. Poverty is a significant problem for PLHIV.

The majority of participants were unemployed. Those who did work were employed in private firms or NGOs. Contrary to expectations this is rarely a result of poor health but reflects the difficulty of getting a job with an HIV positive status and also the demands of following treatment and check-ups etc. Again whilst there are some incidents of direct discrimination in which people have been fired or refused a job on the basis of their status, more commonly it results in a fear of anticipated rejection. People do not feel able to put themselves through the upsetting scenario of potentially being abused and humiliated.
As treatment has improved so has life expectancy. ‘Making ends meet’ is a major concern for PLHIV. Their health is particularly vulnerable to poverty as effective treatment requires a good diet. Many PLHIV feel they need additional income to cover HIV treatment, monitoring testing when shortages occur as well as private healthcare in the face of limited access to public healthcare.

Social welfare and financial support is difficult
to access and perceived discrimination common.
Participants reported encountering discrimination when accessing social welfare. Many participants find that the system is overly complicated and information about opportunities scant.

Recommendations:

• Support to make pursuing legal cases against employers needs to be made more accessible and affordable for PLHIV. In particular recognising the importance of financially and legally supporting initial cases.
  
• The changeable nature of HIV as an illness means that an HIV positive individual can be generally healthy but suffer infrequent bouts of illness. Employment terms and social welfare requirements need to be flexible in accommodating this reality.
  
• Providing more accessible information to PLHIV about their employment rights and access to social welfare support.
  
• Training amongst personnel working in the social welfare system about HIV and issues that PLHIV are facing needs to be made available, in order to overcome misunderstandings about HIV and to foster an increased sensitivity towards PLHIV.

NGOs need to be more transparent and inclusive.
Many NGOs are playing a vital role in supporting PLHIV. Some of our participants gain great satisfaction and self-esteem by being involved in helping other people cope with their illness. However many of them are concerned by a lack of transparency about the use of funds and have reported feeling under utilised by these organisations. Many PLHIV would like to get more involved in trainings etc undertaken by NGOs. Recognising the expertise of PLHIV on their experiences would add value to the authenticity and sensitisation objectives of the trainings. It would also contribute to further empowering PLHIV and countering their marginalisation.

Recommendations:

• More transparency on funding and activity by NGOs to foster trust with the HIV population
  
• More involvement of PLHIV at every level, in particular in trainings about HIV with service providers etc. Acknowledging their expertise.
  
• Capacity building for self-support groups.
  
• Supporting the sustainable development of networks amongst HIV NGOs so that organisations can work more effectively together at national and local levels.
  
• Protect activists from ‘burn out’. Currently the HIV community is led by a few leading HIV positive individuals. It is critical for their health and the success of HIV community work that those taking on a significant proportion of work and responsibility are given adequate support and training by others working in the sector.

Family, friends and community

This booklet has illustrated the various and unpredictable responses people have when they hear that someone they know is HIV positive. The study has found that the consequences of accidental disclosure are most feared by those living in smaller towns or rural areas, where communities are more densely networked.
Understanding the transmission risks and protective measures that can be taken is critical in reducing the fear of HIV. In addition people need to be encouraged to think about HIV as an illness not as a person. Those that have HIV are still persons: a brother; a daughter; a best friend; a mother; a boyfriend; a wife. Support for PLHIV post-diagnosis and for those whom they choose to disclose to is important in facilitating understanding and care. This is already done informally by some doctors. This should be continued, better supported and expanded.

Recommendations:

• Offer accessible information and counselling for family members and friends of PLHIV.
  
• Establishing a support network for all those affected by HIV, for example a family support network.
  
• Ensure that your reaction to learning of someone’s HIV diagnosis is fair.
  

You can change their stories

You have read the stories of individuals living with HIV here in Serbia and in Montenegro. Often they are active people, getting on with living a normal life as much as possible.

Everything about our illness is kept behind a veil of mystery [and] not reaching these masses of people, because the people don’t want to see and they don’t want to hear. So, you cannot begin from the end, you know, when you want to educate somebody you must begin at the beginning, you know. (Neda)

So this is what these individuals have tried to do by being part of this research: to bring the experiences of being HIV ‘out of the shadows’.
What restricts the quality of life of those living with HIV is no longer so much their illness, as treatment has made a substantial difference to how long they can live with HIV. What impairs their quality of life is the social prejudice that clings to HIV.

They pull their sleeve: “Hey, don’t stand with her, she has aids, you’ll get it too!” that’s that. I know I have to die – we’ll all die, but with dignity, if it’s like that – at least be civilised, be dignified, be human. I just want you to play fair with me, cos that’s the way I behave, and I expect a normal attitude toward me regardless that I have HIV. (Milena)

Throughout the study participants have remained inspiringly hopeful that their situations will improve. There is a tangible sense of hope amongst these individuals that if others understood more about the illness, the transmission risks and the impact of unfair behaviour towards PLHIV- they would behave differently. This would mean that they could live positively with HIV as a manageable chronic illness.
And although we may not be able to discover new treatments for HIV: we can all make a significant difference to changing the social consequences of being HIV positive.