SEE & MENA

THE JUSTRI ‘HIV in South East Europe (SEE) and the Middle East and North Africa (MENA)’ PROJECT

JUSTRI is a UK based not-for-profit organisation that seeks to bring together doctors,nurses, other health-care professionals, patients and advocates, governmental representatives and those form the pharmaceutical industry involved in HIV, viral hepatitisand allied conditions. We strive to break down barriers and develop linkage within thisfield to the benefit of all concerned in the fight to diagnose, manage, treat and live with these conditions.

Over the past 4 years we have held 3 meetings, in Belgrade, Istanbul and Malta whichexplored subjects of difficulty experienced across the regions and have attempted here to summarise the findings which we hope will be helpful in engendering change.

Many of the recommendations of the first two meetings have been taken forward in the SEE region and at the Malta meeting representatives from MENA had the opportunity tosee how small steps can start the process of improvement and to see how a previously isolated group of countries with marked political and socio-economic differences can build and develop their capacity to deal with HIV in their own settings. We hope that this process can be replicated in some of the newer members of the JUSTRI family.

HIV in SEE I: Belgrade, Serbia 2007 :Crucial Issues in HIV Diagnosis and Management in SEE

This inaugural meeting brought together around 100 HIV professionals and activists from 13 countries within the region, from Hungary and Romania in the north to Greece. Recognition of this region as an area in great need of networking, sharing and education relating to HIV, led to sessions on HIV therapy and guidelines and led to discussions about treatment access. This meeting allowed participants to interact to share their experiences, problems and develop

solutions.

‘Most of the countries in South East Europe have a low-level HIV epidemic that has unfortunately translated into low priority not only for local governments but also for the international community. There have been only a few international and almost no European-based initiatives for HIV training in the Balkans. This is why I welcome (this) that has helped us not only in training physicians, virologists, nurses and patient advocates but also in raising awareness for the need to improve patient care in the whole region.Because the HIV epidemic in the majority of countries seems to be still in an initial early stage this regionhas a unique opportunity to sustain a low-level epidemic and to avoid treatment modalities known to be suboptimal. I … personally look very much forward to continuing this collaboration’ – Josip Begovac, Croatia 2007

‘In May 2007 on the 1st SEE meeting organized in Belgrade, Serbians and Croatians met for the first time after the war and they started to talk. By May 2011, Serbs were in Croatia talking and making plans for joint projects and scientific papers in future’ – Gordana Dragovic-Lukic, Serbia, 2011

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

research

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

Resources

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

them

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

HIV in SEE and MENA III: Valetta, Malta 2011 : De-stigmatisation through Normalisation

Our third meeting brought together individual doctors and other professionals from 7 MENA countries; Algeria, Egypt, Iraq, Israel, Lebanon, Morocco, Tunisia with delegations of doctors, nurses, patient advocates and government representatives from most of the countries and entities in SEE. The same forum format was used again with delegates divided into 4 groups and all groups taking part in all forums. The following comments summarise the discussions

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?

Moderator: Josip Begovac

Panellists: Daina Dzirkale, Dan Turner

1. Universal access to diagnosis and care

Issues identified

a. Most countries in the region have universal healthcare insurance. But there is an issue delivering HIV care to uninsured HIV+ patients, such as immigrants, asylum seekers and

refugees

b. Different approaches in countries – free care for all HIV+ patients, care for some eg. pregnant women and children, or no care

c. Basic diagnostics are available in most countries – but access to viral load and CD4 count testing is sometimes limited

Suggested solutions

a. Importance of an HIV resistance test or at least data on local resistance prevalence before initiating treatment was stressed

b. To reduce cost – less frequent monitoring of CD4 counts in patients on combination antiretroviral therapy (CART) with full viral load suppression

c. Global Fund grants can be used in resource-limited settings to set up laboratories and perform CD4 counts and viral load measurements

2. Problems with registration, introduction of new drugs and cost

Issues identified

a. Antiretrovirals available throughout the region but the number of drugs is limited

b. Stavudine is seldom or never used but still in WHO guidelines, a conflict for good quality care

c. Co-formulated and newer drugs are less available

d. Cost of CART is increasing due to new guidelines on earlier initiation at higher CD4 counts

e. Registration requirements in some countries are complex and time consuming for pharma due to low prevalence and therefore a small market from business point of view

f. Lack of local pharma company representation in some countries lengthens the registration process

g. Little clinical research done in the region to enhance drug access

Suggested solutions

a. Some countries using generic drugs or Global Fund money to finance CART

c. Newer antiretrovirals are not as available for first line therapy because of cost – even though they are recommended in guidelines, well tolerated and of good potency -

More frequent use of Nevirapine could lower cost of CART

e. Active role of NGOs, patient advocate groups and professional societies for doctors, nurses And others need to raise issues more frequently and to help develop solutions

f. Regional research projects are vital

3. Other issues discussed

a. Post- and pre-exposure prophylaxis

b. HIV infected healthcare workers and mandatory HIV testing

c. Stigma is present for several reasons: 1) low number of patients makes HIV a low identification priority in many countries; 2) however low prevalence figures may be due to

under-reporting because of stigma; 3) fear and misconceptions about HIV transmission still exist; 4) HIV is connected with behaviours such as sex between men (MSM) and injecting

drug use (IDU) that are stigmatised regardless of the HIV status; and 5) the high cost of treatment and care

Conclusion

Regional networking and co-operation is vital to overcome the problems of low prevalence meaning a small market and therefore reduced access to treatment. Regional research initiatives are vital.

Forum B: Women, children and HIV. The issues faced and how to overcome them

Co-moderators: Gordana Dragovic-Lukic and Luminita Ene

This forum was used to start exploring this huge subject and to start identifying issues, rather than suggesting solutions. Further in-depth work is required at future meetings, both professionalspecific and regional meetings.

1. Differences for women

a. Women are 2-4 times more susceptible to HIV infection than men

b. Women tend to be diagnosed with HIV later than men, with advanced stage of the disease (with opportunistic infections) or during pregnancy

c. In addition to manifestations seen in men, women may also have recurrent vaginal yeast infections, severe pelvic inflammatory disease and increased risk of cervical cancer and

precancerous changes

Feedback

a. Low prevalence of HIV in women in most countries of the region apart from Romania and Morocco

b. Late presentation of women was noted in most countries within the region

2. Psychological and social problems

a. Women find it difficult to speak to partners about condom use

b. Women have less power in relationships, may rely on male partners

c. Violence against women – higher risk and fear of violence when seeking treatment

Feedback

a. Women lack power to decide on condom use and control of pregnancy

b. Gender inequality varies between EU/non-EU and within countries among different groups/regions within a country. Financial dependence on men is related to

unemployment/lack of employment for women, particularly in non-EU countries and rural areas

3. Barriers to care for women

a. Less access to and less use of health care resources by women

b. Fear of stigmatisation

c. Lack of education

d. Less access to transport

e. Care role – for children, other family members

f. High-risk behaviour

g. Religious problems

Feedback

a. Need for medical community to have network for HIV care – gynaecologists, surgeons, dentists – with ID specialist as co-ordinator and communicator

b. Stigma everywhere to varying degrees, related to lack of education/ignorance. Stigma seems to be related to HIV rather than to being a woman with HIV. Stigma within the medical/care community is frequent leading to denial of medical care for HIV+ women. Therefore an HIV network of specialists as noted above is vital

c. Community and family stigma is related to lack of education and ignorance. Women infected by a partner or through violence may be shown some empathy, but not if a woman is tested

and diagnosed first in the family

e. Limited literacy and care role, in addition to low social status reduce access to education/awareness programmes about HIV and STI

f. Commercial sex work (CSW) – accurate numbers are not known and focussed action therefore difficult, as commercial sex not legal in countries within the region. 3 groups

identified – sex workers trafficked from former Soviet and African countries are most difficult to handle; with traditional sex workers, some attempts to promote safe sex and testing,

through legalised brothels in Turkey or mandatory health control and STI testing for women working as artists in legalised/unlegalised pubs used as façade for brothels; occasional sex

workers or escort services involve women selling sex to improve incomes. Custom of paying more for sex without condoms, as condom use only mandatory for sex workers in some

legalised settings. Countries within region have NGOs working with risk groups to provide anonymous testing and counselling for STIs – but huge difficulties getting governments

involved re sex work and IDU, though Malta, Israel, Egypt and Morocco have government supported clinics for anonymous STI testing Immigrants – women more vulnerable to forced sex for money and to use drugs. Child abuse and paedophilia also present. Illegal status and language barriers make approach to and programmes with this group difficult IDU – low among women even where IDU main route of transmission within HIV cohort but underestimation due to other risk behaviour such as sex work

g. Church involvement in education and prevention of HIV and STIs and support for HIV+ve women reported as relatively low, more emphasis on restriction not education. Some

examples from Arab countries of promotion of condom use among Muslims

4. Issues for children

a. Access to HIV testing during pregnancy for mothers

b. MTCT reduction – access to prophylaxis after birth limited by availability of syrup formulations, access to formula feeding

c. Stigma issues – access to school

d. Peer effects for older children/adolescents

e. Rebellion against authority figures and infection

f. Risk behaviours – IDU/alcohol, cigarette smoking

g. Sexual issues as mature – no/low use of condoms, lack of education on sexual/reproductive rights, risk of sexual abuse

h. Problems of disclosure of diagnosis – issues with adherence, life/future with HIV

i. High age for young people to consent to testing without parental consent in many countries creates obstacle to testing

j. Lack of juvenile justice systems and child protection agencies

Feedback

a. HIV testing in pregnancy only mandatory in Greece and Romania. Some countries offer testing. Discussion about government/official position re opt-out HIV testing in pregnancy,

not considered cost-effective as low prevalence among women or low heterosexual transmission. Other approach is offer testing only to pregnant women in risk groups – but

risk groups not defined properly. Mandatory HIV testing for all pregnant women is urgently recommended, with the offer of

free tests for all STIs seen as the ideal approach.

b. Rate of HIV infection amongst children within the region appears to be low. The concept of preventing MTCT is understood and appears to be working. In most countries women accept

advice not to breastfeed if advised. Non-EU countries have problems with supply of syrup ART formulations.

c. Disclosure to a child of their diagnosis can lead to issues. Early disclosure is recommended, using age-appropriate tools and support for parents

d. Peer effects can increase risk behaviours

e. Rebellion against school and authorities including medical/staff leads to adherence problems

f. Some countries reported children starting drug use aged 10

g. Sexual issues with HIV+ve adolescents include unprotected sex, multiple partners, refusal to use condoms. Child abuse noted as problem in some former Yugoslavia countries

h. Disclosure and adherence for infected adolescents.

i. Some countries need parental consent for testing children aged under 18 – leads to reluctance to test.

Conclusions

Women and children are a group who need a special approach with regard to HIV, from focussed

prevention measures to individualised care for those who are infected. Lack of power in

relationships, financial dependence and the propensity to be victims of violence and abuse make

women and children a particularly vulnerable population. Pregnant women need special attention

and sustained support in order to get free testing for STIs including HIV. Prevention of HIV

infection has to be focussed on MTCT but also on older children and adolescents who may become

infected from higher risk behaviours.

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

Moderator: Tristan Barber

Panellists: Mitja Blažic, Patrick Byrne

This forum looked at the spectrum of stigma – from the individual to the government – and what can be done about it. Issues around HIV testing and patient empowerment in relation to stigma were considered and discussed.

1. HIV testing programmes

Issues identified

a. Should HIV testing be ‘opt-in’ or ‘opt-out’?

b. Where should testing programmes be conducted?

c. Who should testing programmes be focussed on? Should testing be focussed on gay men, pregnant women, IDU, CSW, everyone?

d. When and how are programmes developed? Focus testing on every STI diagnosis, yearly, change in job, change in partner, pregnancy?

e. Who implements testing programmes – should it be focussed on accident and emergency, all hospital admissions regardless of cause, doctors’ surgeries/clinics, specialist sexual health

services, antenatal services, saunas, needle exchanges, maybe job centres?

Suggested solutions

a. If mandatory testing then need protection of human rights and access to therapy but if everyone is tested there is no vulnerable group. But cannot have an ‘opt-out’ model of

testing if patients are then denied services eg. surgery

b. Stigma is feeding into testing programmes due to risk of exposure of status and the need for confidentialit. If testing in a healthcare environment, need to check the patients you want to test actually attend for healthcare anyway

c. Better to have outreach programmes for MSM, CSW, IDU – use of term ‘high risk’ allows money to be targeted at outreach services – but is this approach due to limited funds

If people not willing to identify as MSM, IDU or sex workers, difficult to access even if outreach programme.

d. If testing used to increase prevention programmes by providing treatment – what are the limitations and short-term financial constraints? Need to be sure more routine testing is followed by intervention in primary infection to prevent onward transmission. Need agreement that HIV testing is a priority within the region to maintain the low prevalence currently seen.

e. Make testing a one-stop procedure. Try all modalities and venues for delivering testing as no single solution . Empower nurses to increase testing programmes. Recognise that voluntary testing and counselling (VCT) is not working in some countries as confidentiality is failing, this acts as a disincentive to test and must be addressed

2. Patient empowerment and stigma

Issues identified

a. Who is the patient?

b. Positive role models

c. Education

d. Involvement

e. Patient choice

f. Research

Suggested solutions

a. Important to remember HIV uninfected risk groups. Norms for groups need to be defined but rights of HIV are human rights HIV affects minority groups such as IDU, MSM – need to consider if the term ‘risk group’ is stigmatising. ‘High risk’ can be an epidemiological term (eg. high risk for cardiovascular disease) or seen as a pejorative term – important to discuss if need to prioritise HIV or risk group ‘High risk behaviour’ vs. ‘high risk group’ terminology.

b. Positive role modelling is very important in empowering patients who may be poor, unemployed, satisfied with what they get and who don’t know their rights But need to recognise that patient representatives may become closer in thought to professionals as they gain knowledge and skills

c. Education of general population through government led destigmatisation programmes, ensuring work place regulations give legal protection for those who test HIV+. Education of patient groups to ensure patients know their rights and how to use the legal system, empowerment through litigation. Education of colleagues – stigma still remains from surgeons, gynaecologists etc who may not operate or deliver babies for HIV patients – need education programmes for doctors/nurses, lead on scientific basis as well as moral/ethical one

Consider patient delivered education.

d. Involvement by patients at clinic, local, national and international level – to achieve better services for weakest service users. Involvement by clinic staff in education programmes, maybe specific teaching in medical/nursing schools – problem is basic education needs outweigh HIV education; also focus may be on big cities not smaller places and clinics.

e. People with HIV may not want to make their case public as this will expose them as HIV+ -need to respect individual autonomy. Internalised stigma must be recognised as important as externalised stigma – an HIV patient may still feel like a second class citizen, however empowered they are – some patients still stigmatise themselves.

f. Research is needed as very little evidence based work on what works against stigma – controls, measure interventions. Make research culturally specific – do your own research!

Conclusion

Stigma was identified as remaining a problem even amongst educated health care professionals (HCPs). We identified a clear need to develop and integrate better education packages for HCPs (to involve patient representation) in order to reduce stigma and facilitate delivery of testing programmes. It is possible that the change in the epidemic has affected who NEEDS to know about – or who comes into contact with – HIV and this is having an effect on continuing stigma.

Forum D: Education, interface and society. Exploring the issues of treatment literacy and education, the relationships between patients and health care providers and the interface with society

Moderator: Milena Stevanovic

Panellists: Cenk Soyer, Zoë Sheppard

The main focus of this forum was education for patients, nurses and the general public to improve healthcare provider-patient relationships and increase access and uptake of counselling and testing programmes.

1. Patient education

Issues identified

a. General lack of education for patients and low treatment literacy in many countries in the region. There is also little availability or absence of general information about HIV.

b. In some countries lack of real communication between doctors and patients.

c. Provision of care vs. education/health promotion.

d. Lack of knowledge by media that HIV is chronic not acute disease.

Suggested solutions

a. Positive Living Association (PLA) in Turkey has set up legal polyclinics project to increase treatment literacy and knowledge of rights. PLA started as patients connecting by email –

this model could be applied in other countries.

b. Medical model of care needs to be challenged by patients so decisions about treatment are made jointly by doctor and patient.

c. Israel has education/health promotion programme for patients but recent influx of HIV+refugees is stretching care system. Some MENA countries are concentrating scarce resources on providing primary health care rather than promoting education about HIV. Kurdistan Iraq has no monitoring system, testing is only in Baghdad and the only patient education is at the hospital. Other delegates offered to use their knowledge and experience to help. Health care providers and agencies need defined systems for purchasing and accessing patient education to ensure funding accompanies education work.

d. Understanding and recognition by media about HIV as chronic disease, so messages are correct and negative historical stereotypes are not continued

2. Nurse and medical staff education

Issues identified

a. Need for good nursing care just as important now as at start of epidemic. In many countries there is little understanding of what nurses can undertake in HIV care

b. Knowledge and skills needed to deliver quality HIV nursing care need to be defined. Educational packages need to recognise individual requirements while providing quality

education.

c. Education for medical professionals in some countries is not adequate leading to on-going stigma and discrimination by some health care professionals (HCPs) towards people with HIV.

Suggested solutions

a. Role of nurse generally in the medical hierarchy makes for problems in many countries within the region. It is possible to challenge this but slow process. Education of both doctors and

nurses can inspire nurses, as well as helping doctors see the expansion of nursing roles as freeing their time to pursue other areas, rather than as a threat to doctors.

b. National HIV Nurses Association (NHIVNA) in UK has developed HIV Nursing Competencies for standards of knowledge and skills required to deliver quality nursing care, including webbased learning packages based on the competencies. These could be adapted to other countries to provide locally and culturally specific programmes for nurses – contact NHIVNA

through www.nhivna.org. This educational programme has enhanced professional and personal development of nurses.

c. Continuous post-qualification education is required for all medical, dental and nursing staff, including using web-based learning, e-networks for support and collaboration with crossprofessional education, to reduce stigma towards and improve care for people with HIV.

3. Voluntary counselling and testing programmes

Issues identified

a. Funding for programmes

b. Maintenance of funding and NGO involvement

Suggested solutions

a. Global Fund (GF) funding has been/is used in many countries to set up testing programmes. But GF have strict and difficult procedures to follow – need strategic plan, monitoring system related to indicators etc – some countries have difficulty putting systems in place. Many countries are struggling to resource testing and health promotion programmes. Other

countries such as Tunisia, have good testing programme with centres throughout the country. Needs to be dialogue and support between countries to transfer best practice and

programmes that work.

b. Big issue about what happens when GF leaves and funding stops – need major effort byNGOs to continue the work and find funding. But some countries do not have NGOs – in Tunisia they are not allowed – or there is a problem reaching NGOs to work with eg. Morocco

Conclusion

Education for doctors and nurses is vital to decrease HCP stigma and increase capacity for care as well as improving the actual care provided. Shortfall in testing and counselling could be reduced by good utilisation of well educated nurses. Collaboration between countries within the region could provide a way forward, through sharing of experience and knowledge to address lack of access to education programmes. Alternative strategies need to be identified to enable collaboration/communication, such as internet/web-based networks of education and support.

Recommendations for action from HIV in SEE and MENA III

1. Countries in South East Europe, Middle East and North Africa have very similar issues ofaccess to diagnostics and drugs. Concerted efforts to work together could provide bigger

markets for purchasing and supply of diagnostics and drugs.

2. Differences in processes for drug approval, planning and distribution between EU and non-EU countries and those relying on global treatment programmes need to be addressed to

provide uninterrupted supply and service user access to drugs,

3. 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.

4. Training, education and capacity building for all members of the multidisciplinary team and those involved in healthcare commissioning continues to be vital.

5. Regional research programmes would enhance capacity throughout the region.

‘I wanted to take this opportunity and thank you for inviting us to your meeting on behalf of the Egyptian delegate. I think it was a great opportunity to learn to know people and share experiences with healthcare staff from other countries. It gave me personally many ideas how to proceed with our anti-stigma projects…On the way back to Cairo, our Egyptian doctors discussed how to establish a clinic for HIV+ patients. I think this really shows how much influence the meeting had on them, which is really great. So many thanks for giving us this opportunity’ – Anna-Leena Lohinva, Egypt

‘Thank you for every thing. It was interesting experience in Malta. I learned so much about what is going in the Middle East and eastern Europe. I have (made a) good relation with Arab colleagues and I think that I can contribute to incoming meetings’ – Gamal Hassoun, Israel

‘I want to thank you because finally I feel I am not alone, that we are not alone … (HIV) is in my country a big problem … nobody wants to talk about it, and to acknowledge the existence of the problem is exactly what is needed in my country. This must change! I believe and have hope – for me and all HIV + people …Thank you for an unforgettable experience’ – a patient advocate from Bosnia.

‘Thank you for your understanding, your efforts and your host at the last meeting in Malta. Congratulations for the high quality of the organization. The scientific program was excellent’ – Mohamed Chakroun, Tunisia

‘Good chance to hear other stories, to make connections to strengthen previous ties and to work collectively on possible solutions’ – Anon

‘All sessions were interactive by the participants and it was really interesting to hear about experiences and the situation of different countries like Iraq, Morocco, Egypt’ – Anon

‘Thanks to you all as ever for an excellently organised and inspiring meeting. These meetings are truly a pleasure to be part of, thanks for having me along’ – Tristan Barber, UK

‘The idea of not having people’s designation on the name badges was excellent as it contributed to breaking down barriers and getting people chatting… The group discussions were excellent and the dynamics of each group was so different’ – Patrick Byrne, UK

‘On the way back to Cairo, our Egyptian doctors discussed how to establish a clinic for HIV+ patients. I think this really shows how much influence the meeting had on them which is really great!”

“ I want to thank you because finally I feel I am not alone, that we are not alone. HIV in Bosnia is a big problem… but nobody wants to talk about it. Acknowledging the existence of the problem is exactly what is needed for my country.”

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SEE & MENA

THE JUSTRI ‘HIV in South East Europe (SEE) and the Middle East and North Africa (MENA)’ PROJECT

HIV in SEE I: Belgrade, Serbia 2007 :Crucial Issues in HIV Diagnosis and Management in SEE

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

Forum A: Diagnostics and drugs from pharma to patient

1. Funding issues :

2. Registration issues for drugs and diagnostics

3. Pricing

4. Delivery and supply chain

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

What is the current situation and what are the roadblocks?

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

1. Increasing testing rates to encourage early presentation

2. Fostering positive change amongst health care professionals for better patient care and increased capacity

3. Genuine inclusion of PLHIV in positive changes

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

1. User of care vs. the system of provision of medical care relationship

2. User of care vs. the provider of care relationship

3. User of care vs. NGO service provider relationship

Recommendations for action from HIV in SEE II

HIV in SEE and MENA III: Valetta, Malta 2011 : De-stigmatisation through Normalisation

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?

1. Universal access to diagnosis and care

2. Problems with registration, introduction of new drugs and cost

3. Other issues discussed

Forum B: Women, children and HIV. The issues faced and how to overcome them

1. Differences for women

2. Psychological and social problems

3. Barriers to care for women

4. Issues for children

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

1. HIV testing programmes

2. Patient empowerment and stigma

Forum D: Education, interface and society. Exploring the issues of treatment literacy and education, the relationships between patients and health care providers and the interface with society

2. Nurse and medical staff education

Recommendations for action from HIV in SEE and MENA III