HIV in SEE II: Istanbul, Turkey 2009 : Working together for progress

This second meeting invited delegations of a doctor, nurse, patient/community advocate, diagnostician and a government representative from each of the countries of the region and used an innovative format of forums based around four specific subjects to explore cultural, economic and structural barriers to successful responses to HIV and related conditions in the region. Each forum had a moderator and two panellists, which included doctors, nurses, patient/community advocates, international HIV specialists and representatives from NGOs and pharma. Delegations were sent from Albania, Bosnia & Herzegovina, Bulgaria, Croatia, FYR Macedonia, Greece,Hungary, Kosovo, Rep. Srpska, Romania, Serbia, Slovenia & Turkey. In total, 116 participants attended the meeting, including 76 delegates from SEE. Delegates were grouped into four multinational and multidisciplinary groups to encourage wide-ranging discussions of problems, gain information and share possible solutions to the significant obstacles to access to quality HIV treatment, diagnostics and care within the region. Each group took part in all four forums and the following reports summarise the discussions from all four groups for each forum.

Forum A: Diagnostics and drugs from pharma to patient

Licensing, regulatory, guidelines, supply chain and cost. What are the obstacles and what are some creative solutions?
Moderators: Josip Begovac and Smiljka de Lussigny
Panellists: Donald de Korte, Nenad Petkovic, Tekin Tutar, Jennifer Watt, Mike Youle
The session dealt with the issues surrounding the delivery of treatment and diagnostics from producers to people living with HIV. It was interesting for it revealed many obstacles and problems that are similar across countries. The discussion was structured around four issues shown below with the obstacles and suggested solutions identified.
1. Funding issues :
Obstacles identified
a. Shortage of funds for treatment programmes varies across the region. The budgets for purchasing drugs and diagnostic tools are buried in the total governmental healthcare
budgets in many countries
b. Alternative examples of resource mobilisation exist, such as hospital special funds. In Serbia, for example, diagnostic tests are purchased from a special fund set up from
revenues collected via selling post stamps
c. Once in the EU, countries can count on EU structural funds, which also contribute to healthcare
d. In some countries, such as FYR Macedonia, the Global Fund is the only source of funds for medicines. With the Global Fund project finishing soon, in this situation the question arises
– will the Government be ready to take over the commitment of providing access to treatment to those in need?
Suggested solutions
a. Governments need to understand the importance of providing treatment and encouragement to commit to funding
b. A proposed advocacy tool, to help on a regional level, was the development of a research paper outlining the cost-effectiveness of treating people living with HIV
c. Although many pharmaco-economic studies exist, specific research that would take into account the regional context is necessary to move Governments towards committing to
continued provision of treatment and care
2. Registration issues for drugs and diagnostics
Obstacles identified
a. Complicated and cumbersome registration procedures that differ markedly from country to country
b. Countries of the region face delays in registrations of up to >5 years in comparison with the timing of EMEA registration. The participants discussed possible reasons for this situation
with the most common explanation being defining the countries as small “markets”
c. On the other hand, pharma representatives raised the issue of cumbersome registration procedures at national level. FYR Macedonia today has not one ARV medication registered
as yet. There are ways to import medications when not registered – but it is important to
remember that the costs can be higher if the prices are not regulated via usual channels The situation with diagnostics is less complicated, due to the less stringent regulations
d. Paediatric solutions are missing across the region. Many countries reported that they usually have to use adult formulations and make in-house solutions
Suggested solutions
a. Since the registration processes across the region are often complex and lengthy and often require repetition of studies that have already been performed at EU level, the opportunity
for regional harmonisation or recognition of EMEA registration was discussed as a possible solution
3. Pricing
Obstacles identified
a. Long process of getting medications actually prescribed in a country. Even when the product is registered in a country, the important message came across: what is available is
not necessarily accessible in the country. The reason for this is that once registered, drugs need to be priced, and after price approval, they need to get onto the national drug list,
only then can it be prescribed. In Turkey, this process can take up to two and half years for non-HIV drugs
b. High prices for EU member countries and accession countries. Most of the companies do recognise the different financial situations of countries in the region and reflect it in their
pricing policies
c. However, being a EU member or accession country presents a barrier to being considered as a country entitled to a lower price – due to the free-market regulations within the EU (or
potential status in the future), FYR Macedonia, Croatia, Romania, Bulgaria and other EU member states or accession countries often end up with the same level of prices as more
developed, Western European countries. On top of that, many countries don’t have legal solutions for discounting
d. Another issue of concern is the level of distributors’ mark-ups. It has been shown that the price can differ considerably – often increasing to twice the initial price – due to the markups
that different distributors add to the producer’s price
e. It also became apparent that the national laws and regulations sometimes don’t allow for discounting
Suggested solutions
a. No solution was suggested in relation to the long process of getting drugs onto a national
drug list
b. Identifying legal mechanisms for discounting, which pharmaceutical companies can use for
reducing their prices
c. As a proposed solution, participants outlined more strict regulation of distributors’ mark-ups
and the possibility of regional distribution
4. Delivery and supply chain
Obstacles identified
a. Interruptions in supply of medications. Some participants outlined problems with small stocks in pharmacies that are distributing drugs to patients (i.e. one month), which carries a
danger of delays in delivery of drugs
b. Disturbance in treatment supply, which has been reported in Serbia in recent years, forcedinterruptions in treatment uptake or abrupt and non-strategic changes in regimens.
Communication within the supply chain needs to be improved – sometimes participants had a perception that no one is responsible for delays in treatment provision
c. Lack of confidentiality during delivery process. Also, where and how is the drug delivered is an important factor for this region where stigma and discrimination are very high
d. The confidentiality issue is important and in some countries endangered PLHIV – patients in Turkey receive their medications in local pharmacies and their files can be accessed by any
pharmacist and therefore potentially become public
Suggested solutions
a. Better planning – which would also require a better and centralised software system
b. A computerised database would also allow for better monitoring of HIV care, as well as better planning of drug supplies and would ultimately provide data on the
effectiveness of ART and care
c. No solution was identified for the problem of the lack of confidentiality in some countries.

Forum B: Research and research partnerships – How to advance research efforts in the region

Moderators: Alan Landay and Mario Poljak
Panellists: Ann Deschamps, Gordana Dragovic, David Haerry, Dimitrios Paraskevis, Simon Portsmouth
What is the current situation and what are the roadblocks?
Initiatives have been successful in the region. A network of six laboratories – the Southern European Collaboration for the study of HIV and Other Infectious Diseases (SECH) has begun
collecting epidemiological and virological data from the region. Collaborative research efforts with other countries have allowed investigators access to laboratory and statistical expertise. The long term solvency of the group will depend on identification of sustainable sources of funds, such as grant applications to the EU as well as pharmaceutical funding.
Obstacles identified
a. The difficulty with finding couriers able to ship samples on dry ice and to gain agreements for infectious samples to cross borders. This problem has impeded epidemiological work in
Bosnia working with EUROSIDA. However, Serbia has managed to work with couriers to overcome this problem
b. Social isolation and stigma with poor representation of patients’ interests, a hierarchical medical model of care with underutilisation of the skills of nurses prevents initiation of
c. Some countries have little accurate epidemiological data as rural communities are less well reported
d. There is a need for standardisation and agreement on the ethical conduct of research in the region
Suggested solutions – building networks and collaborations
a. There was general agreement that a cohort modelled on the ‘Swiss Cohort Study’ should be established in the region. Realistically this would take little effort once up and
running and the challenge is getting collaboration between clinicians, bench researchers, epidemiologists and social scientists
b. The SECH would like to expand their network from the current six to 12 countries, and gain support and input from epidemiologists, patients groups, social scientists etc
c. The European Network for Clinical Trials (NEAT) would like to expand into SE Europe, (Although little has come of it to date).
Suggested solutions – opportunities for growth
a. Several pharmaceutical companies operate in the region and have supported initiatives in HIV. Research can be supported with grants and educational initiatives can be supported
with educational grants
b. Involvement in global studies of new medicines and diagnostics would allow early access to new drugs and provide infrastructure for future studies
c. A bid for the European AIDS Clinical Society annual meeting for 2011 to take place in the region is underway. This would provide an excellent opportunity to champion and
disseminate research in the region (This was successful and EACS 2011 Belgrade will take place this year and will act as a focus for development of HIV in SEE).

Forum C: Positive Change – How to overcome barriers to quality care – stigma, testing programmes, patient empowerment

Moderators: Sarah Bernays and Ranko Petrovic
Panellists: Mitja Blažic, Snezana Brkic, Ben Collins, Deniz Gökengin, Eileen Nixon
Stigma has been a dominant characteristic of the epidemic throughout its history. However stigma’s association with HIV/AIDS is neither immutable nor inevitable. This workshop was framed around breaking down the hypnotic monolith of stigma and discrimination through outlining practical steps and activities to get on with ‘doing’ positive change. The aim of this session was to expose delegates to the current activities and possibilities within the region in order to energise them around the opportunities for small, feasible steps to create positive change. The remit and objectives of the session were introduced and the stigma of HIV in the region was placed in a historical and global context. It was particularly stressed that: the regional experience of HIV stigma was not exceptional globally; and that much progress was already being made and could be further developed within the region to enable and create ‘positive changes’ to improve the lives of those affected by HIV.
1. Increasing testing rates to encourage early presentation
Testing rates are currently very low among the general population and amongst some groups in which the epidemic is concentrated the rates remain low (e.g. MSM). As a result the majority of newly diagnosed are late presenters.
Obstacles identified
a. Voluntary Counselling and Testing (VCT) Centres are being rolled out in many countries within the region, however publicity around them is low
b. There are instances in which there is inadequate availability of tests in VCT centres
c. Media involvement in publicising testing facilities is limited to World AIDS Day
d. There are concerns around confidentiality and disclosure in smaller communities
e. HIV testing is not considered or encouraged amongst non-HIV specialists. This is attributed to low levels of knowledge around early indicators and financial arrangements for testing
f. In some situations, people in communities hear that x person has come for a test. There is the concern that staff at the testing centre are gossiping and not maintaining anonymity
Suggested solutions
a. Improve and provide ongoing training for doctors in: early indicators of HIV (provide userfriendly tabular guides); testing procedures, e.g. to make them aware that testing costs
may be covered by alternative sources than their own budgets
b. VCT centre networks need to ensure consistent availability of tests and provide ongoing professional training to staff (including nurses) so users can be assured of routine
confidentiality and appropriate treatment
c. Promote the need and opportunity for testing by involving the media in publicising the centres, normalising testing amongst the mainstream populations and reassuring the public
of the centres’ professional conduct. Collaborate with journalists by operating open door days and providing non-sensationalist human stories (e.g. following someone through
testing procedure). Work with media throughout the year. Media training was suggested d. Ensure access is suited to service users’ needs, e.g. for young people provide late night
opening or make testing available at music festivals, for at risk populations use outreach work programmes. Successful models are available within the region which use mobile
testing units and community organisers
2. Fostering positive change amongst health care professionals for better patient care  and increased capacity
Nurses work on the frontline with patients and are a potentially crucial resource in providing improved patient care and support. This is a concrete way to decrease doctors’ patient load.
Obstacles identified
a. There is a dominant medical hierarchy which considers the role of nurses to be inferior
b. There is a lack of continuous education for nurses (and often for other health professionals)
c. Nurses rarely receive any specialist training in working with HIV and feel disempowered
d. Nurses often don’t have a choice where they are placed within the hospital. Therefore, it can be perceived by some as punishment to be sent to an HIV ward
Suggested solutions
a. Recognition of the crucial role nurses can play (especially by doctors and at a government level)
b. Ongoing training of nurses (particularly in relation to HIV assessment skills and skills to support adherence); e.g. through inclusion of HIV module in initial nurse training, specialist
and ongoing training for nurses working with HIV/AIDS, inclusion of nurses in country HIV delegations attending international trainings. Training should be designed to enable nurses
to take more active roles in care
c. Allow nurses to choose to work in HIV. Examples were given that where coupled with basic but effective specialist nurse HIV training this improved the quality of care given to patients
(especially in significantly reducing discrimination) and rewarded motivated nurses with opportunities to increase their skills and responsibilities
d. Self organisation of nurses and greater partnership with NGOs so that together they can lobby government and their clinical institutions to provide training as a crucial step forward
in improving patient care
e. Develop a benchmark for current nursing care nationally and/or within the region to be able to measure any improvement.
3. Genuine inclusion of PLHIV in positive changes
The involvement of PLHIV is often interpreted to be tokenistic, whilst their genuine involvement is undermined by pervasive fears around the risk of disclosure and the need to focus on their own health and care.
Obstacles identified
a. PLHIV fear that getting involved in NGO activity, self-support groups and lobbying may mean their status is disclosed
b. The efficacy and impact of NGOs are undermined by low levels of communication and collaboration between organisations due to perceived competition for funding
c. Whilst PLHIV have a significant contribution to make in advocating for and implementing positive changes they are also curtailed by human resource constraints
Suggested solutions
a. A key emphasis was placed on ensuring that funders and organisations allow adequate time for PLHIV and key stakeholders to build trusting relationships between and among
themselves. This is a crucial step in enabling positive change. Many successful examples were based on allowing for the development of trust and not being disheartened by the
time that it took
b. In order to encourage initial involvement of PLHIV there needs to be some flexibility and openness shown to allow people to feel safe and welcome
c. Training and capacity building, involving professionals from external sectors which can provide valuable support, e.g. lawyers, psychologists, and which can develop the skills and
capacities of PLHIV to manage the organisations
d. Improved collaboration and communication between organisations and government by encouraging transparency, shared initiatives and joint involvement in funding bids
e. PLHIV’s involvement can operate in multiple formats which do not threaten their anonymity. The use of electronic media had been successfully employed in many settings to encourage, foster and maintain ongoing dialogue with PLHIV who would otherwise feel unable to be involved. Virtual networks can be used to establish self-support and information sharing groups, which may later evolve into face to face groups
f. Focusing on relevant, feasible issues for PLHIV (e.g. treatment availability) can not only encourage PLHIV about the value of participation but one success can empower PLHIV to
become involved in further work and provide additional energy and motivation
g. Other suggestions included applying the Peer Educations Model, used in HIV prevention to encourage PLHIV participation: Information, Motivation, Behaviour Change (training) and
h. Whenever possible, in this area, efforts should be made to move toward people affected by HIV patient and their needs

Forum D: Building a successful treatment experience – Exploring issues of treatment literacy and relationships between patients and health care providers

Moderators: Arzu Kayki and Svilen Konov
Panellists: Alina Dumitriu, Luminita Ene, Can Pekkara

The forum identified three key relationships that affect a successful treatment experience. These are given below with the major obstacles identified for each relationship and suggested solutions.
1. User of care vs. the system of provision of medical care relationship
Obstacles identified
a. Centralisation of the system of provision of treatment, care and support
b. Continuity of ARV supply
c. Health insurance for people with lower socio-economic status, marginalised groups or migrants without an official status
d. Payment for treatment of opportunistic infections (OIs) and HIV-related conditions
e. Scattered and suboptimal monitoring
Suggested solutions
a. Lobby for decentralisation, especially where the cost-effectiveness and cost-benefit analysis show that decentralisation will improve the access to treatment and care. In the cases
where it is not cost-effective to decentralise, a doctor regularly visiting a local clinic may be a solution. In addition, paying the travel expenses for going to hospital may be an incentive
for some people to be more regular in their attendance
b. Lobby for a buffer of medicines, so that when an interruption of ARV supply is nascent (as a result of administrative, financial or other hindrances), then the buffer can be used
c. Lobby the government for a cut-off, under which PLHIV will receive free access to medical care. This includes mainly the treatment of OIs, as in almost all of the countries ARVs are
provided free of charge
d. Lobby for free of charge OI treatment and medicines, if not for all, then for a certain sum, above which the treatment and medicines become free of charge
e. A multidisciplinary team from different countries to work on guidelines or adapt existing guidelines that could be approved by the local governments. A unified (several countries)
procurement of assays to reduce the price and improve coverage
2. User of care vs. the provider of care relationship
Obstacles identified
a. No clear boundaries of expectations or rights and responsibilities on either side
b. The role of GPs is limited to being administrative
c. Users of medical care (and in most cases nurses themselves) underestimate the possible role of nurses
d. Users of care do not have the culture of consulting the pharmacist
e. Lack of patients’ treatment information
f. Users of medical care cannot choose the provider of care
g. Refusal of treatment – discrimination cases in receiving other health care services outside of infectious disease/HIV clinics e.g. dentists, gynaecologists etc.
Suggested solutions
a. Raise awareness in the provider about the importance of the relationship between patients and health care providers for effective treatment adherence. Talk to your patients.
Contractual relationship, so that at the point of registration, a patient signs information sheet that clearly defines his/her rights, but also responsibilities. Provision of information on
legislation concerning the patient in non-technical language
b. Organise trainings for GPs, so that their image can be improved and their expertise used accordingly. Organise regular meetings between community based organisations (CBOs),
PLHIV and GPs, so that a relationship of co-operation can be reinforced
c. Organise meetings between users of medical care and nurses where the nurses are the speakers, so that a culture of trust between them is created or reinforced, as well as
patients perceiving nurses as competent and having a major role in their care. Further to that, nurses (when appropriate) can be asked to work as counsellors too
d. Proactively channel questions on drug interactions, adherence and other pharmacology orientated issues to the pharmacist. Allow time for discussion between the pharmacist and
the patient. Create a relationship of trust between the pharmacist and the patient, as some topics like recreational drug use, herbal use, etc. may appear out of a discussion between
e. Involve PLHIV and CBOs in developing information. Make use of internet, since printed materials may not be sustainable. Apply to international NGOs and pharmaceutical
companies for funds to create a hub of information in different Balkan languages. A centralised approach is preferred – this will avoid waste of resources, as well working better
for quality assurance purposes
f. Lobby for regulation at hospital level to allow patients to choose their doctors, as well to be allowed to get specific appointments, so that they can see their doctor, rather than the
doctor who is on shift
g. We need activists! Doctors, CBOs and PLHIV should react collaboratively. Awareness raising activities at heath care settings. Discrimination court to challenge treatment refusal
3. User of care vs. NGO service provider relationship
Obstacles identified
a. Some NGOs are small enterprises and users of care are simply a number that proves activity. Others are created and supported by the government for the purpose of applying
for Global Fund money
b. There are NGOs with strange values systems i.e. use herbal therapies and stop using ARVs, etc.
c. Peer counsellors and psychologists are perceived as either a last resort or opponents, rather than a part of comprehensive care
Suggested solutions
a. Create Community Advisory boards for the Ministry of Health and other stakeholders where the voice of each organisation can be heard
b. Work with media and community press to identify those NGOs and protect PLHIV from their service. Create a culture of including NGOs and peer counsellors at an earlier stage of treatment and care, i.e. when patients deal with the first shock of diagnosis or when discussing sensitive issues. For that purpose hospitals should provide premises for the NGOs on the grounds of the medical establishments, so that patients can access low-threshold, one-stop-shop comprehensive care, including the services of the NGOs. NGOs should have a clear policy
and list of services that they can provide and inform both users of care and providers of care about these
c. The concept of a multidisciplinary team, where the patient is provided with the comprehensive care of a team (doctor, nurse, pharmacist, psychologist, peer educator and
counsellor, social worker, nutritionist, etc) should be pursued. The opportunity to receive the best care out of each specialist’s expertise should be provided.

Recommendations for action from HIV in SEE II

1. At all levels from patient to government, countries in South East Europe should work together to provide bigger markets for purchasing and supply of diagnostics and drugs
2. Regional harmonisation of drug approval, planning and distribution should be considered to provide uninterrupted supply and service user access to drugs
3. Regional networks and collaboration are required to increase research within SEE, with expansion of current research networks and the involvement of nurses in research a priority
4. Multi-disciplinary teams – involving doctors, nurses, pharmacists, psychologists, peer educators, counsellors, social workers, nutritionists and others – should be seen as good
practice for the region
5. Training, education and capacity building for all members of the multidisciplinary team and those involved in healthcare commissioning is vital
6. Utilisation of the skills of all stakeholders will enhance: testing and diagnosis; treatment and adherence; care and management; research; and the recognition of the importance of the
countries of SEE as a regional grouping.
‘It was my pleasure to attend the meeting in Istanbul and work with a great team of professional  and knowledgeable panellists. We learnt a lot during our sessions, and only scratched the surface of what is really hidden under the problems of treatment interruptions, limited treatment options and distribution specificities in the region. I hope these results will be used further to react to and solve some of the issues. Thank you for everything! Smiljka de Lussigny’– Forum Moderator
‘It was a great experience for me to work in such a great team and an opportunity for networking. I returned home full of energy and many new ideas. Thank you all’ – a patient advocate, Romania ‘We had a nice campaign last year… it was a year of cooperation and nice projects and joint efforts … I was talking just about lack of cooperation 2 years ago in Istanbul… and we (made) some improvement sincethen’ – Mitja Blažic, Slovenia, 2011