Independent Evaluation Report on the IFRC/RRC Programme for Comprehensive Tuberculosis Control in Belgorod Region

Independent evaluation report on the IFRC/RRC programme for comprehensive tuberculosis control in Belgorod Region

September 2008

This report reflects the findings and opinions of an independent evaluation team consisting of:

Dr. Michael Pelly MB MSc (Clin Trop Med) FRCP Chelsea and Westminster Hospital DTM+H NHS Foundation Trust

369 Fulham Road

SW10 9NH London

United Kingdom

Dr. Thyra E. de Jongh MSc DIC PhD Centre for Health Management

Imperial College Business School

South Kensington Campus

SW7 2AZ London

United Kingdom

Dr. P. Sai Kumar MD MPH Imperial College Consultants Ltd.

58 Princes Gate

SW7 2PG London

United Kingdom

Contents

Summary ...... 1

1. Background ...... 4

1.1 Global TB situation ...... 4

1.2 TB situation in Russian Federation ...... 4

1.3 Project Objectives ...... 6

1.4 Methodology ...... 6

2. History of Red Cross TB Programme in Belgorod ...... 8

2.1 The beginning ...... 8

2.2 Model for collaboration between TB services and Red Cross ...... 9

2.3 Overview of the USAID/IFRC/RRC TB programme ...... 10

2.4 Results of collaborative Red Cross TB project ...... 11

3 Evaluation of the Red Cross TB Programme in Belgorod region ...... 16

3.1 Organization of TB services in the region ...... 16

3.2 TB Programme performance in Belgorod Region ...... 18

3.2.1 TB burden and notification rates ...... 18

3.2.3 Supervision and monitoring of TB services in the region ...... 24

3.2.4 Training of medical and paramedical staff...... 25

3.2.5 DOTS Plus for management of MDR‐TB ...... 25

3.2.6 TB‐HIV collaborative activities ...... 27

3.2.7 Links with the penitentiary system ...... 27

4. The way forward ...... 28

4.1 Contribution of the IFRC/RRC TB project ...... 28

4.2 The Challenges ...... 29

4.3 Sustainability ...... 31

4.4 Recommendations and Future suggestions for RC involvement ...... 31

Summary An independent evaluation of the IFRC‐RRC comprehensive TB programme in Belgorod was undertaken by the team from Imperial College, London. The evaluation primarily focussed on the achievements and challenges in the implementation of the USAID assisted TB project in the Belgorod region, with special emphasis on the role of social incentives in improving treatment adherence among the TB patients.

The evaluation report is the outcome of detailed review of available project reports, TB performance reports, and interviews with key stakeholders from the IFRC/RRC TB project, regional TB programme staff, policy makers, donors, WHO and more importantly the TB patients. The field visits to collect relevant information and conducting interviews was undertaken between 25th June to 4th July 2008 and 22nd September to 27th September 2008.

Russia is currently ranked 11th among the list of 22 high burden countries in the world, and accounts for 36% of the TB burden in the WHO‐Euro region. The resurgence in TB has been the outcome of socio‐economic crisis in the early 90s, breakdown of health care delivery systems including that for TB, and increasing rates of drug resistant TB and TB/HIV infections in the community. The Tb case rates were estimated to be nearly 50 times higher in the penitentiary system as compared to the general population, and were considered to the focal points for transmission of disease.

Against this background the Russian Red Cross with support from several development partners initiated a comprehensive TB/HIV control programme in Sept 1999, in collaboration with the department of health, regional governments, TB services, WHO and the community. The project is being supported with USAID assistance since Sept 2001. The essential model for collaboration in the challenging environment of a strong vertical TB structure, and early resistance to globally recommended DOTS Strategy was made possible through an innovative collaborative model. The model clearly identified the areas of collaboration and primarily focussed on health education, capacity building of TB network (both infrastructure and human resource – training), and facilitating convenient patient centred supervised treatment during continuation phase of TB treatment. To improve patient compliance, the project targeted the identified socio‐economically vulnerable groups, especially the unemployed, the difficult patient groups like alcoholics, ex‐prisoners, drug users, and homeless.

The major outcomes of the USAID assisted IFRC/RRC TB project is outlined below.

 Strengthening of relationship between RRC and TB services at national, regional, district and community level. RRC is currently involved at all levels in planning, implementation and evaluation of TB services.

 Strengthening of TB infrastructure, especially the development of laboratory capacity (including culture and drug sensitivity testing) both within the general health system and in the penitentiary system. The RRC project has provided both technical support and funds for strengthening laboratories, MDR‐TB facilities with novel infection control measures, and TB programme surveillance systems.

 Significant inputs in building human resource capacity by organizing training workshops, and facilitating training of TB staff at national and international level.

 Implementation of the social support programme, which involved a mix of patient support and counselling, provision of food and hygiene packets and individualized attention. This has resulted in decline of treatment default rates from a reported high of 30% before the initiation of project to fewer than 5% currently. From the analysis of available data, it has been calculated that on an average the risk of default is 5 times higher among those not receiving social support, as compared to those receiving social support (OR‐ 5.34, 95% CI‐ 3.55‐8.29, p<0.0001). This observation, significantly lays the emphasis for continuing social support packages for improving treatment compliance

 Strengthening of Visiting Nurse programmes in the regions, that has not only led to improvements in TB service delivery, but is also benefitting the traditional patients who are sick, old and needing support. In some of the regions, including Belgorod, the local governments are providing additional support (funds) for the VHN scheme.

In spite of the significant gains, few challenges have been identified which needs to be considered for strengthening the programme and ensuring sustainability of the project. Some of them are highlighted below.

 Given the expansion of TB services and inclusion of DOTS Plus services, there will be increased demand for social support. The RRC should develop a strategic 5 year plan (an immediate 2 year plan under the USAID project and a plan for the 3 years beyond that) for the TB/HIV/AIDS project, with special emphasis on estimating resources needed (human resource needs and funds) to undertake expansion of services and activities.

 The IFRC/RRC should develop a comprehensive plan to engage with federal and regional authorities for increased commitment to co‐financing and budgetary support. Alternate avenues for fundraising, for example through engagement with industry (Confederation of Industries, World Economic Forum, etc.), would not only attract resources, but would also facilitate improved understanding of the disease and reduction of stigma within the private sector/industry.

 Although substantial efforts and resources are invested to improve awareness, the impact and success of these measures have not been systematically assessed. We suggest that the RRC carefully reviews its current information and education activities to further help develop a comprehensive needs‐based and cost‐effective strategy. Continued pro‐active engagement with communities and health care providers (feldsher points, community health workers, mid‐wives, etc.) through information and education activities should be used to help reduce the delay in diagnosis and initiation of treatment.

 Implementation of DOTS Plus services in the regions necessitate training of VNs on MDR‐TB guidelines. Plans for monitoring adverse drug reactions, and referral linkages for support in such conditions must be built in.

 The TB/HIV interventions need to be extended across all regions.

 The RRC staff may be trained in aspects beyond TB care, essentially on soft skills in programme management like monitoring, advocacy and communication, etc. Regular inter‐regional meetings of RRC project staff may be conducted to share ideas and experiences to address local challenges, build capacity, and promote solidarity.

 The RRC has a wealth of data available which needs to be routinely analyzed and monitored. It is critical that all records at the regional level are maintained in electronic formats (computerized) for easy retrieval and analysis. Local medical institutions and research bodies may be helpful in conducting small‐scale studies/analysis.

 The IFRC/RRC can take a lead in the organization of inclusive regional and national workshops that highlight the socio‐economic consequences of TB on patients and their families. Such workshops would help in building consensus towards patient friendly policies and services.

 Lastly, In the event of fully state‐funded and strengthened TB services, wherein the RRC is no longer required, it will be important for the RRC, as a neutral civil society organisation, to seek its best niche. Although the described transition would be the hallmark scenario for the programme, it is likely that specific activities, such as the support of ex‐prisoners and migrants (groups often suspicious of state services) or homecare for PLWHA, remain best performed by the RRC.

1. Background

1.1 Global TB situation1 Tuberculosis, a disease caused by the bacterium Mycobacterium tuberculosis, has affected mankind for over 5,000 years and the disease has been a major cause of mortality and morbidity. Poor living conditions, debility and malnutrition predispose a population to the disease, and over 90% of the world’s cases occur in low and middle income countries, especially in Asia and Africa, leading to a vicious cycle of disease and poverty. Although the bacilli have been discovered over a century back (1882, Robert Koch), and drugs have been available for more than 60 years, the disease continues to infect 9.2 million people every year, and 1.7 million people die of TB every year globally – making it the 2nd leading infectious cause of death, next only to HIV. In 2006, 8% of incident TB cases (0.7 million) and 12% of TB deaths (0.2 million) were in HIV‐positive people.

Recent trends in new case notifications and in the estimated disease burden suggest a slow decline in incidence (‐0.6%), prevalence (‐2.8%) and TB mortality (‐2.6%). It has been estimated that if the current trends are maintained, the TB related Millennium Development Goals (MDGs) will be met in most regions except Africa and Europe. The slow progress in Africa and Europe is attributed to a complex interplay with the HIV epidemic, the growing burden of drug‐resistant TB and a weakening of TB health systems due to economic and political crisis.

1.2 TB situation in Russian Federation 1, 2, 3 The Russian Federation is ranked 11th on the list of 22 highest‐burden countries in the world. An estimated 153,000 new TB cases (107 per 100,000 population) occur annually, accounting for 3.1% of the global incident cases, and for 36% in the WHO‐Euro region. TB accounted for nearly 24,000 deaths in 2006 (17 per 100,000 population), making it the leading infectious cause of death (83% of deaths from severe infectious and parasitic diseases) in the Russian Federation. Over three‐fifths (63.7%) of TB deaths occur in the economically productive years of life (15‐55yrs), indicative of the severe socio‐economic consequences of the disease on families and communities.

1 World Health organization (2008). Global tuberculosis control: surveillance, planning, ﬁnancing. WHO, Geneva. No. WHO/HTM/TB/2008.393. 2 Joint United Nations Programme on HIV/AIDS (2008). Report on the Global AIDS epidemic. No. UNAIDS/08.25E/JC1510E. 3 Ministry of Health and Social Development (2007). Tuberculosis in the Russian Federation 2006. An analytical review of the main tuberculosis statistical indicators used in the Russian Federation. Moscow. RF/FPHI/RIPP/CTRI/FSIN/WHO

The resurgence of TB in the Russian Federation in recent decades is exacerbated by the dual burden of TB/HIV co‐infections and drug resistant TB. Although the prevalence of HIV in the adult population is low (0.1%‐0.6%, ~35,000 new cases annually), there has been a 40 fold increase in the estimated number of people living with HIV people living with HIV in the last decade (21,000 in 1997 to 940,000 in 2007) and 85 fold increase in the number of people registered with HIV/AIDS during the same period (4361 cases in 1997 to over 376,000 cases in 2007).4 The HIV‐incidence among new TB cases is estimated at about 3.8% (0%‐9.8%), the proportion of co‐infected among TB patients has increased from 0.6% in 2002 to 3.1% in 2006. This apparent increase, however, is also the result of expansion of screening services (90% of new TB cases screened for HIV in 2006).

The lack of anti‐TB drugs and the use of non‐standardized and suboptimal therapies during the 1990s have resulted in alarmingly high numbers of MDR‐TB cases, both in the civilian and prison populations. The available data suggests an increase in the rate of MDR‐TB in the country from 10.5% among respiratory TB cases in 1999 to over 20% in 2006. With an estimated 36,000 MDR‐TB cases, and insufficient availability of quality assured diagnostic services, quality assured 2nd line anti‐ TB drugs, and adequately trained staff across the regions, the need for strategic expansion of DOTS Plus services is highly critical.

As in most countries, the TB prevalence in penitentiary facilities poses a significant challenge. In the 1990s, the TB case rates among prisoners were estimated to be 50 times higher than in the civilian population, and mortality was about 30 times higher. Prisoners were therefore considered a potential source of continuous TB and MDR‐TB infection for the general population. The penitentiary system contributed to 12% of new case notification in 2006. With improvements in TB activities in prisons, the TB notification rate has declined three‐fold from a maximum of 4,347 per 100,000 (inmate) population in 1999, to 1,387 per 100,000 population in 2006. However, the risks of drug‐ resistant TB and TB/HIV co‐infection are comparatively higher in the prison population (socio‐ demographic profile of patients, high risk behaviours, drug abuse, etc.) and pose a significant challenge.

With the renaissance of the public health system at the turn of the century and the implementation of supervised short‐course chemotherapy, the new smear positive case‐detection rate (%) has improved from 31% in 1999 to 47% in 2006. However, the treatment success rate among such cases continues to be low at about 60%, due to significant failure rates, death rates and default rates.

4 World Health Organization, UNAIDS, UNICEF. Epidemiological fact sheet on HIV and AIDS Core data on epidemiology and response Russian Federation July 2008.

These poor treatment outcomes are indicative not just of a higher prevalence of drug‐resistant TB, but also of health system weaknesses in the ability to diagnose TB cases early, and to ensure adherence to treatment.

1.3 Project Objectives To compliment national efforts to address the challenge of the TB epidemic and to strengthen the TB care services, several national and international partners, including the Russian Red Cross (RRC) and the International Federation of Red Cross and Red Crescent Societies (henceforth called the Federation or IFRC) have forged a partnership. With support from a grant provided by USAID this partnership has developed a comprehensive model for tuberculosis control in several regions of the Russian Federation. This report summarizes the findings of an evaluation of the USAID assisted programme in Belgorod Region. The broad objectives of the evaluation were:

1. To review and document the contribution of RRC/IFRC to the TB control efforts in Belgorod region: a. To measure the impact of RRC/IFRC services on treatment adherence

b. To analyze the role of various forms of social support in improving treatment adherence

2. To review and document the strategic working partnership of the RRC/IFRC project with the Federal and Regional governments and with the National TB Programme (civilian and penitentiary services): a. To analyze stakeholders views on the RRC/IFRC programme

b. To review the barriers and opportunities for effective collaboration

3. To assess the sustainability of the project and to formulate recommendations for the future role of RRC/IFRC involvement and for strengthening the project to achieve the desired epidemiological impact for TB control

1.4 Methodology The evaluation was undertaken in two phases. An initial visit to Moscow and Belgorod region was undertaken from 25th June to 4th July 2008. This visit focused primarily on eliciting opinions on the social support component of the IFRC/RRC programme. These findings will be reported on separately at a later stage, together with an in‐depth quantitative analysis of the effectiveness of social support on treatment adherence. A second visit by the evaluation team was conducted from

22nd September to 27th September 2008. This evaluation involved reviewing the relevant NTP documents and semi‐annual project reports, conducting key‐informant interviews with different stakeholders, and visiting Red Cross facilities and TB facilities to review the organization of TB services in the region. The details of the places visited and key‐informants interviewed are given in Annex I

2. History of Red Cross TB Programme in Belgorod

2.1 The beginning The Russian Red Cross (RRC) is the oldest humanitarian organisation in Russia, founded in 1867. In 2001, it consisted of a network of over 100 regional committees, 1,321 local branches and 775,000 volunteers. The Federation formed its delegation in Russia in the beginning of 1992, and its main focus has been on developing and strengthening health programmes, including a first aid and Visiting Nurses Service (VNS), and on providing relief assistance to the vulnerable in winter.

The rationale for involvement of the RRC and the Federation in TB control services arose from the fact that TB primarily affects the poor and vulnerable sections of the society – like the homeless, unemployed and the malnourished. The impact of TB on individuals and the society is devastating not only for its high morbidity and mortality, but also because of the economic consequences. Given the acuteness of the TB epidemic and the economic crisis that broke out in the 1990s after the break‐up of the Soviet Union, in 1999 the RRC and the Federation initiated a TB/HIV/AIDS/VNS programme in seven regions – Arkhangelsk, Astrakhan, Buryatia, Kemerovo, Murmansk, Pskov and Tomsk – with support from the European Community Humanitarian Organisation (ECHO) and its donor participating national societies (Danish RCS, British RCS, Norwegian RCS, American RCS, Icelandic RCS).

In September 2001, with assistance of a USD 3.4 million grant from USAID (Grant No. 118‐G‐00‐01‐ 00180), an effective, comprehensive, sustainable and replicable model of TB control was developed in three identified regions in partnership with the regional authorities. The project has five objectives: a) To assist regional authorities to develop an effective TB control system; b) To assure access to care and follow‐up for the most vulnerable TB patients, using social/ nutritional support to increase adherence to treatment; c) To facilitate improved links between the prison and civilian TB services; d) To increase preventive awareness in the general population concerning TB, HIV/AIDS and sexually transmitted infections and to promote a healthy lifestyle; and e) To strengthen the institutional capacity of the RRC and its Visiting Nurses Service.

The project sites were selected based on the size and vulnerability level of the potential beneficiary population, the commitment of regional authorities to TB control, the presence of a strong Russian Red Cross branch organisation, the commitment from the regional TB services to introduce

internationally recognised TB control measures, a pre‐existing foundation for providing social support and DOT to TB patients, and a commitment to extend co‐operation between civilian and prison TB services.

Based on the above criteria, the initial 3 regions identified under the project were Pskov, Belgorod, and Khakassia. With extension of the USAID grant the project was expanded to Khabarovsk in 2005, Adigea in 2006 and Jewish Autonomist Region in 2007.

2.2 Model for collaboration between TB services and Red Cross The Red Cross programme was designed to support and complement the existing health care service and to encourage and assist the development of a new approach to TB care. The intention was to work in close collaboration on strengthening parts of the TB service, which would enable a gradual change to a more ambulatory style of care. From the outset, health education, training and capacity building were considered key pillars of effective TB services and catalysts for change.

The design of this comprehensive model for TB care is summarised in Figure 1, which outlines the various roles and responsibilities of each of the agencies involved.

Fig 1: Model for collaboration between TB services and Red Cross

Role of agencies in TB care

CASE-FINDING CLINICAL CARE FOLLOW-UP

Health Com pl i an ce Edu cat ion Monitoring Sput um Diagnosis microscopy Drug Social/Nutritional +/- and Su ppl Suppo rt Identifying X-Ray y vulnerable Treatm ent Education families grou ps + patients

Authoritie M.O.H. Authorities s +/- +/- +/- WHO/CDC Red Cros s Red Cross Medical NGO

Source: Pelly.M.D.E. 1998 (private communication)

Under the proposed model, the role of the Red Cross includes provision of assistance to the health authorities in health education activities for the general public, TB patients and their families, as well as identification of vulnerable groups for outreach and assistance. To facilitate the transition from radiology to microbiology as the primary method of diagnosis, resources and training were given to strengthen and upgrade laboratory services. The model furthermore illustrates the importance of social support for vulnerable TB patients (e.g. soup kitchens, food parcels) and of improved organisation of DOT services to promote adherence to treatment. Provision of social support is a traditional Red Cross role and was easily accepted in connection to TB services. Through its VNS, the Red Cross furthermore assisted the TB services in the supervision of DOT for the most vulnerable patients. This included tracing defaulters.

As per its mandate, the Red Cross has not been involved in the area of direct clinical care (diagnosis or prescription of treatment), which remains the responsibility of the national and regional public health system. However, as stated by one of the key informants “The Red Cross has been a catalyst for change for strengthening the TB services in the region”. This acknowledgement of the contribution of the Red Cross to the change in the TB management practices and quality of TB services is a significant achievement for the organization, and owes to the successful implementation of the above‐described model.

2.3 Overview of the USAID/IFRC/RRC TB programme

The extension of the USAID assistance until September 2010, and an increase in the support to 10 million USD, has enabled expansion of the programme to 6 additional regions. The extension and increase of funding reflect the recognition by USAID of the importance of the project and its comprehensive approach to TB care, which has at the same time strengthened civil society. Part of the success of the programme has been attributed to the fact that ownership of the programme rests with national specialists, aided only when necessary by international advisers.

Of the six regions, four are supported financially by their local authorities. In Belgorod, this support translates into financing of all social support. The RRC branch (through the USAID grant) supports the VNS as detailed below. This shared model of funding has been replicated by a Global Fund project in twenty regions of the Russian Federation.

Four regions (Pskov, Belgorod, Khakasia and Adigea) have recently been approved by the Green Light Committee (GLC) for the care of MDR‐TB cases. This supports the distribution of appropriate drugs

for MDR‐TB to the value of 3 million USD adequate for the treatment of 300 patients (at an estimated drug cost of 10,000 USD per patient).

2.4 Results of collaborative Red Cross TB project

The key features of the Red Cross programme have been technical, programmatic and administrative collaboration with various stakeholders, including the Russian Federation's Ministry of Health and Social Development; the Ministries of Justice, Education, and Culture; regional/local authorities; the penitentiary institutions; Federal TB institutes; and international partners like the USAID, WHO or CDC, and the community. Over the years, the Federation and RRC have been invited to participate in high‐level technical working groups that are involved in policy formulation and programme management. As observed in Belgorod, the working relationship with the local authority is excellent and the RRC are asked to meetings with the Governor. The working agreement for joint activities in Belgorod has been agreed locally with the regional MOH rather than with the federal authorities as health is considered a regional issue. As indicated by the regional RRC Chair in Belgorod, “it is a great privilege to be invited for the Governor’s meetings…” [a special civil society working group formed in Belgorod Region to support local authorities], indicative of recognition of the key role that the RRC has in the region.

Through this overarching collaborative work, the RRC/IFRC has facilitated improvement of the TB programme in the region by getting necessary funds, technical inputs from national and international experts, logistic support in the form of equipment, and capacity building trainings at regional, national and international fora, and adoption of policies for patient‐centred care. As stated by a representative from the penitentiary system, “the Red Cross programme has facilitated interaction with colleagues outside of our system and with colleagues from abroad …”.

Some of the overall achievements of the project are summarized below:

o Capacity building: The Federation has facilitated and organized training programmes for medical and paramedical staff on various themes for TB Control. In addition, they have facilitated participation of national and regional experts and technical staff in international training workshops, seminars and conferences. The programme has also developed training modules for the Visiting Nurses on TB control, covering a wide range of aspects related to TB control. They focused not only on the programmatic management of TB control and preventive services, but also addressed psychosocial

aspects of TB care, and concepts like patient rights and professional conduct, which under the new Stop TB strategy has been included in the Patients Charter.  Laboratory infrastructure strengthening: A key area of project support has been the strengthening of laboratory capacity in the region. Besides organizing training programmes for staff and laboratory personnel on sputum microscopy/culture DST, the project has supported the establishment of a quality assured sputum microscopy network by funding upgrading of laboratories, procuring and providing laboratory equipment such as binocular microscopes for sputum microscopy, and establishing culturing and DST labs in the regions.  Strengthening supervision and monitoring: A second key activity of the project has been facilitation of monitoring visits to the project regions, carried out in accordance with the national monitoring strategy by supervisors from the federal institutes, permanent consultants of the programme, and representatives from the RRC Health Department and Federation Delegation. During these visits all activities related to registration and reporting, chemotherapy, microscopy research diagnostics and control are monitored. Special visits are organized to support regions with the establishment of MDR‐TB control interventions and the preparation and submission of the GLC grant applications. Special training workshops were organized on “How to conduct monitoring visits” to build regional capacity, standardize the approach, and bring objectivity into such evaluation visits.  Strengthening Recording and reporting systems: Through the projects, the RRC has facilitated implementation of revised recording and reporting formats. Training programmes were organized for all concerned programme staff (TB dispensary, penitentiary system, Red Cross staff) to facilitate the establishment of Surveillance and Monitoring Units in regional institutes by providing necessary hardware (equipment, computers, vehicles, etc.).  Social Support: A critical component of the Red Cross project has been the provision of social support during the continuation phase of TB treatment. The social support interventions include food parcels and hygiene kits, which act as incentives by their direct link to attendance of DOT visits, and enablers such as transport reimbursements, legal and psychological counselling, home care by a visiting nurse for very sick patients, and personalized care through organizing convenient DOT. A more detailed analysis of the various forms of social support is given in the following sections. o The nutritional support package involved provision of ‘protein kits’ (given daily/ three times a week) consisting of high protein products, such as stewed fish, vegetables, beef, milk products, noodles and grouts (oat‐flakes). The average price for a protein kit was 30 roubles and for an accumulated protein kit (give once a week) ‐ 89 roubles (Belgorod). Food parcels 12

(given twice a month) for all regions included flour (or rice), grouts, sugar, condensed milk, stewed beef and other foodstuffs. The average price of a food parcel was 180 roubles. However, with increasing costs, concerns have been expressed on the reduction in size of the kits, but efforts were being made to change the contents of protein kits regularly to ensure that the incentive did not become less attractive. o A standard hygienic parcel (given monthly or quarterly) is composed of laundry soap, soap, shampoo, toothpaste and a toothbrush and costs on average 60 roubles. The emphasis in providing such a package was not only on improvement of patient hygiene, but also on conveying the importance of cleanliness of patients and their environments (including cough hygiene) on reducing transmission of infection. Unfortunately, insufficient funding has meant the discontinuation of provision of hygienic kits in certain regions, including Belgorod. o Legal and psychological counselling: One of the key innovations of the Red Cross TB project has been in addressing the psychological needs of TB patients, as well as legal problems that a patient (in particular ex‐prisoners and the unemployed) may face. Across all regions, nearly 4,500 people have been provided psychological counselling (nearly 60‐70% are TB patients), and over 3,500 people have been provided legal counselling (including TB patients from the penitentiary system) during the project period (2nd quarter 2002 – 4th quarter 2007). Besides providing psychological support to address apprehensions of TB patients and to promote continuity of treatment, the RRC also provided group and individual legal counselling on issues related to, for instance, housing problems, residence registration, rights and duties of TB patients, or entitlements to social benefits. Addressing these issues, commonly encountered in more socio‐economically vulnerable groups, is an important stimulus for attendance of treatment appointments. Improvement of living conditions is, furthermore, an important factor in determining the outcome of treatment.  Health Education: The project has facilitated involvement of all stakeholders like the Ministries of Health, Education, Culture and Justice (by formal orders of the regional authorities) in development of a strategy for TB/HIV related advocacy, communication and social mobilisation activities. The strategy includes World TB Day celebrations, known as ‘White Chamomile Day’. The day is usually celebrated with seminars for the community, art competitions for children, press conferences, and TB themed pamphlets, and other articles. In addition, charity concerts are organized to raise awareness (and funds) about the TB project.  Strengthening RRC and Visiting Nurse programme: The RRC has always played an important role in the provision of nursing services in Russia. The Visiting Nurses Service was established in 1960, and was set up in all republics of the Soviet Union to provide professional medical and social 13

assistance to the lonely and the handicapped. By 1990 there were almost 7,000 visiting nurses in the service. However following the collapse of the Soviet Union and the ensuing socio‐economic crisis, the number of VNs dropped to just over 2,000 by 1999 due to a lack of human and financial resources in some regions. The objective of strengthening the VNS was achieved through recruitment of 10 VNS to the TB programmes in the 7 pilot regions in 1999. The recruited staff received an initial 2‐week training on “Basics of homecare” (10 days) and a 3‐day course on “Care of TB patients”. Since then there has been ongoing training for the VNs and the regional RRC staff on issues such as organisational development and fund raising.

Between the last quarter of 2003 (4q2003) and the third quarter of 2005 (3q2005), over 1,060 TB patients have been visited by the visiting nurses in the 3 regions of Pskov, Khakasia and Belgorod, totalling over 8,500 home visits. Of these, 15% were for health related problems and 32% were for other reasons like treatment interruption or default.

Realizing the significant contributions made by the VNs, local governments have been contributing towards staff salaries. The level of support received from local authorities is different across regions, but the RRC has been successful in negotiating with local authorities to fund sizeable proportions of VNs salaries with the remainder paid by funds from the RRC or locally raised funds. As informed in Belgorod, the average salary of nurses within the public health system is around 150 roubles. Under the RRC TB project, VNs receive 100 roubles from the RRC, whereas an additional 50 roubles is contributed by the local government as a special allowance for providing care to infectious disease cases.

In addition, the local authorities have earmarked funds under the regional budgets to co‐finance the TB programme with the regional RRC branch. The funds stipulated for co‐financing support the purchase of hygiene kits for TB patients, distributing food kits, and conducting information and education activities on TB issues.

In addition to strengthening the VNS, a definitive indication of the strength of the RRC as a civil society organization is the extent of its volunteer network. Volunteers are usually recruited from all sections of the community – e.g. school and college students, retired health care workers and occasionally ex‐TB patients. Nearly 50,000 volunteers were recruited between 2002 and 2004 in the different regions. The volunteers primarily participate in awareness raising programmes and fund raising activities but also provide non‐medical assistance to patients, peer support, and distribute food and hygiene kits.

Most of the RRC workers feel that the involvement in the TB programme has significantly strengthened the standing and capacity of the RRC. There was open support expressed by the Deputy Governor of Belgorod region, and support for ongoing financial resources. From the perspective of the VNs the programme has given them new skills and a new position within the healthcare system.

3 Evaluation of the Red Cross TB Programme in Belgorod region

3.1 Organization of TB services in the region Belgorod region, which lies within the Central Federal District of Russia, has a population of 1.5 million (2005), spread over 29 districts or rayons (of which the RRC is active in 17 rayons). Nearly 50% of the population resides in urban cities. The region, covering an area of 27 thousand kms2, is an area where industry accounts for 51% of its gross output, followed by agriculture (15.3%). According to the State Committee of Statistics data, in 2004 the average per capita income of the population in the region was 4,062 roubles a month.

The Governor is the head of the regional administration and, supported by the Sanitary Anti‐ Epidemiology Committee on issues of social diseases, oversees all public health services, including TB. The regional health system is managed by the Health Department, which is responsible for organization, guidance and management of medical services in the region. There are roughly 95 hospitals and 211 outpatient polyclinics in the Belgorod region. The NGO sector or the private sector is relatively small, and does not provide TB care/services. The population‐to‐bed ratio in the region is 4.6% above the national average (~117.7 beds per 10,000 population), the physician‐to‐population ratio is 39.2 per 10,000 population (19% lower than national average), and the mid‐level medical staff ratio is 118.8 per 10,000 population.

TB services are provided through a network of dedicated TB hospitals/dispensaries and sanatoria. There are nearly 1,000‐1,200 TB beds in the civilian sector, and an additional 100‐150 beds in the penitentiary system. In addition to the in‐patient bed network, there are children’s sanatorium facilities for 624 people, including the Ivnyanskiy TB sanatorium with 100 beds. These facilities are supported by 84 TB specialists and 302 TB nurses within the civilian sector.

The Regional TB Dispensary is the central regional institute for implementation and monitoring of all TB activities. It is supported by 3 State TB health facilities, the sanatoria, and TB units in psychiatric hospitals and the TB cabinet/unit in the central district/rayon hospitals. All these facilities provide in‐ patient care. They are supported by microscopy and radiology services for diagnosis and evaluation of all forms of TB. The regional dispensary has been identified as the regional laboratory for performing culture and DST for diagnosis of MDR‐TB. With inputs from RRC, the TB centre in Gubkin is currently being upgraded to an MDR‐TB unit (in‐patient services) for the region.

Fig 2: Schematic representation of TB functionaries (civilian sector) in Belgorod

Federal TB Institute WHO & other technical International Federation of Red partners Cross and Russian Red Cross Regional TB Dispensary, Belgorod

State TB Hospital, State TB Hospital, State TB Hospital, Mandrovka Ivnyanskiy TB Children’s TB

Stariy Oskol Gubkin Shebekino psychiatric hospital sanatorium sanatorium

Central District Hospitals, 18 TB Units

District General Hospitals Red Cross

and Polyclinics Centres/facilities Feldsher points Visiting Health Nurses

The general medical services include the polyclinics, general and rural hospitals, feldsher and midwife posts, and other primary care facilities. The general medical services are where most patients with symptoms of TB are first seen. The general health care facilities perform radiography on all suspected cases (and where possible sputum examination), and probable cases (and designated as TB suspects) are referred to the TB Hospitals/dispensary for confirmation of diagnosis and initiation of treatment.

After confirmation of diagnosis and an initial 2‐3 months of hospitalized treatment during the intensive phase (i.e. until patients turns smear negative), patients are referred back to the general health facilities (TB units) for the continuation phase of treatment. These facilities, along with the feldsher points in their jurisdiction, support TB treatment during the continuation phase, and are accountable to the regional TB dispensary.

At the regional RRC branch, there are 140 VNs dealing with a variety of medical programmes including chronic medical issues and problems related to ageing. Their main contribution is a home‐ based care service for the very vulnerable, but they are also actively involved in the implementation of TB services. The Red Cross centres and their Visiting Nurses supervise treatment during the continuation phase for those patients identified as socially vulnerable and who receive social support under the project.

The Research Institute of Phthisiopulmonology (RIPP) in Moscow (one of the 6 national TB institutes) is the supervisory federal institute for the Region, and provides technical guidance and monitors all

TB related activities in the region. The Federation and the national unit of the RRC coordinate with the federal and regional institutions, WHO and other partners for strengthening TB services in the region.

The TB control program in the penitentiary system is under the jurisdiction of the Department of the Federal Service of Punishment Execution (DFSPE) of the Belgorod region, which, in turn, subordinates to the Federal Service of Punishment Execution. The penitentiary and civilian systems work in close collaboration on the implementation of the TB control programme. The subprogramme “Tuberculosis” provides for TB control activities at the facilities of the penitentiary system. In the Belgorod region there are 10 penal facilities, of them 5 are correctional colonies, 2 educational colonies for children and 3 investigation detention centres. At the entry to the investigation detention centre, all detainees undergo a medical evaluation, including chest fluorography and serology examination for HIV. TB suspects have microbiology examinations of sputum done. All inmates and detainees are screened for TB twice a year by fluorography.

3.2 TB Programme performance in Belgorod Region

3.2.1 TB burden and notification rates

A review of the TB Epidemiology report published by RIPP and WHO suggests a marked decline in prevalence of all forms of TB (and a marginal decline in bacillary positive TB) at the national level in Russia as well as in Belgorod region over the last 5 years (Figure 3, left). In 2006, the prevalence of TB in the region was reported to be roughly half of that at the national level. A review of trends in mortality rates suggests a marginal decline (5%) in Belgorod, but this has been relatively stable at the national level (Figure 3, right).

Fig 3: TB prevalence and mortality rates in Russia and Belgorod, 2002‐2006

Fig 4: Trends in TB notification rate and treatment success rates, Belgorod 2002‐2006

(Note: Population was assumed at 1511.6 thousand (2005) during the entire period as no annual population totals were available).

Fig 5: Trends in treatment outcomes amongst new pulmonary TB cases, Belgorod 2002‐2006

After an initial spurt between 2q2002 and 2q2004, TB case notification rates appear to have stabilized at around 60 TB cases per 100,000 population (based on data compiled from semi‐annual project reports) (Figure 4, left). Treatment success rates have been around 80% (Figure 4, right). It should be noted that the treatment success is for all pulmonary cases (compared to the global benchmark for new smear positive cases). Treatment failure rates, death rates and transfer‐out rates have all been relatively high (Figure 5). Default rates, however, have reduced significantly from a reported high of 30% (not shown in the graph) prior to the initiation of the project to fewer than 5% in the current project period.

3.2.2 Case finding and treatment activities

As per regional and federal regulations, case finding involves both active and passive case detection. Besides TB detection among symptomatic cases visiting health facilities, the active component involves annual fluorographic screening of household contacts and population groups considered at high risk of contracting TB (prisoners, teachers, health staff, etc.). Available data suggests that approximately 63% of the population in Belgorod was screened for TB in 2005, and this active search contributes to 60% of all new TB cases detected in a given year.

The passive component involves the general health system and the TB hospitals. After an initial phase of screening at the general facilities, TB suspects are referred to TB hospitals for confirmation of diagnosis and initiation of treatment. All the necessary investigations are repeated at the TB hospital to establish the diagnosis and to grade the extent of disease.

Upon diagnosis, patients are admitted and initiated on standardized treatment regimens. The average length of stay is estimated to be about 80 days (~2.5 ‐ 3 months), i.e. until patients turn smear negative.

For the provision of DOT during the continuation phase, the TB dispensary staff identifies socially vulnerable groups in need of social support based on pre‐determined social and medical criteria. The social inclusion criteria are:  average income per capita in the family below the minimum income level in the region;  people not working and at the same time registered as disabled within disability categories 1 and 2 (according to categories assigned by the Russian Commission of Treatment and Labour);  pensioners living alone;  ex‐prisoners;  migrants; 20

 members of multi‐ children families;  homeless;

Medical criteria to exclude patients who would otherwise be eligible for social support are:

 Sputum positive after the end of the intensive phase of treatment  Continued hospitalisation (e.g. for surgery)  Diagnosis or suspicion of MDR‐TB

Patients who meet the criteria are referred to RRC facilities in the region for DOT during the continuation phase. However, for reasons of convenience patients may prefer to receive their treatment at other TB facilities. In those cases, the social support will be provided by the RRC to the TB facility for distribution to the patient. The remaining patients are referred to peripheral TB units for DOT. In areas where there are no TB units, PHCs/polyclinics are responsible for TB treatment. It is estimated that 50‐55% of patients receive DOT at RRC units, 25‐30% at TB dispensary/TB units, and 10‐15% at PHC facilities.

Although standardized diagnostic and treatment services are practiced in accordance with accepted standards of care, and although the evaluation team is generally satisfied with the organization of services, a few areas of concern were identified that need to be addressed to further strengthen case finding and treatment holding:

 Although the evaluation team could not conclusively quantify the delay between onset of symptoms to first contact with a health facility and then to initiation of treatment, discussions with dispensary staff suggest a delay of 2‐3 weeks, primarily due to delay on part of the patient reaching the facilities. Analysis of the patient pathway for seeking care would help the programme in formulating problem‐oriented IEC messages targeting community, patients, and providers.

 The high death rate among TB patients could possibly be due to high rates of drug resistant forms of TB, but delay in diagnosis and initiation of treatment cannot be ruled out. As informed by several key informants, the delay is also caused by lack of trust with public services among certain groups of patients (especially high risk groups like the homeless, drug users, ex‐prisoners, etc.). In addition, the existing policy for hospitalization for 2‐3 months keeps the patient out of contact with his/her family and social network for a prolonged period of time. In the absence of social support or financial security for the patients’ family (as most TB patients are in the 21

economically productive years), patients may opt to delay their treatment until they are no longer able to be involved in any economically productive work. Workers of the RRC did indeed mention a few such cases, but the RRC has limited funds to support such families. Given the social and economic context of the existing treatment strategies, it may be crucial to generate evidence on the socio‐economic impact on such families to be able to build a case to include TB families under the social net. These inputs may in return be beneficial in reviewing hospitalization policies in the country.

 An important characteristic of TB is the stigma associated with the disease. Although there has been improvement in the perceptions of the population towards the disease, many still express reservations about the curability of TB, believing it to be a chronic condition. Other concerns expressed include fear for loss of current and future employment opportunities. Awareness about the disease helps fight stigma and IEC should be directed to spread the message that TB is a curable infectious condition if adequately and timely treated.

 Although treatment default rates have come down significantly since the onset of the programme, the timing of default and the role of social support in reduction of default are important to verify.

o One of the concerns expressed is the timing of default, which in some cases occurs during the intensive phase – i.e. during hospitalization. Although the physical infrastructure within the TB health facilities have been upgraded, issues identified in the previous paragraphs related absence of financial and social support to families during hospitalization may be some of the possible reasons for early default, and could be addressed.

 As regards provision of social incentives, analysis of default rates among those who received incentives and those who did not is shown in the graph below.

Fig 6: Impact of social support on treatment default rates – Comparison of trends in Belgorod 2002‐06

As shown in Figure 6, based on available data from semi‐annual reports, on average the risk of default is 5 times higher among those not receiving social support, as compared to those receiving social support (OR‐ 5.34, 95% CI‐ 3.55‐8.29, p<0.0001).

Furthermore, evaluation of the expansion of the RRC social support programme from 2002‐2006 indicates an inverse trend between proportions of patients receiving social support and treatment default rates (as a proportion of TB patients receiving social support) (Figure 7).

Fig 7: Relationship between expansion o social support services and trends in treatment default rates, Belgorod 2002‐06

In addition to nutrition and hygiene kits, under the RRC programme some patients can receive psychological and/or legal counselling. Although the individual contribution of each form of social support on rates of treatment adherence is difficult to delineate, it is likely that each of these social support measures has played an important role in reducing rates of treatment default. Other contributing factors may have been the overall strengthening of TB services in the region, improved DOT services and a general maturation of the programme.

In collaboration with the local RRC, a detailed study is planned to demonstrate and document the role of various social support measures in improving adherence to treatment. Findings from this study may be used to inform TB programme design in other regions of the Russian Federation as well as in other countries.

3.2.3 Supervision and monitoring of TB services in the region

The overall responsibility of the supervision and monitoring of TB activities in the region lies with the TB dispensary. The dispensary staff has undertaken nearly 100 supervisory visits (1‐2 visits in a week) to the PHCs and other treatment units to monitor treatment activities. These visits also provide an opportunity to offer technical and administrative guidance and to correct any wrong practices.

The Red Cross has also developed its own monitoring teams who supervise treatment activities by VNs, and who support the TB dispensary in supervising peripheral TB Units, PHCs and feldsher points.

In addition, the RIPP federal TB institute provides technical support and guidance to the regional TB programme to ensure observance of federal laws and guidelines. The RIPP undertakes routine monitoring visits to the region, and the Federation and RRC staff coordinate, facilitate and participate in such visits.

The Federation has also supported the establishment of a Surveillance and Monitoring Unit at the Regional TB dispensary. The unit is managed by a senior medical officer, and has about 5‐6 data managers. The unit uses a software package to maintain an electronic record of all TB patients. All TB forms received from the peripheral units are entered and quarterly cohort analysis is undertaken. This record is shared with RIPP, WHO and the RRC/IFRC for monitoring purposes. The findings are shared and discussed with all concerned during a quarterly conference on implementation of TB services in the region.

3.2.4 Training of medical and paramedical staff

In collaboration with the TB Dispensary, RIPP and WHO, the RRC have organized several training programmes for all staff involved in diagnostic and treatment activities (TB staff, penitentiary staff, PHC staff and the Red Cross staff). Trainings primarily covered diagnosis and management of TB, diagnosis and management of MDR‐TB, M&E, and social issues concerning drug usage and adherence to treatment. Over 600 PHC doctors have been trained during the project period. There is also a formal plan for retraining of programme staff every 2 years.

Under the project, regional staff (in particular lab personnel) have been trained in newer initiatives like DOTS Plus and TB‐HIV collaborative activities at national institutes and international training workshops.

Training modules for VNS staff have been developed, and there was a mention of ongoing efforts to accredit the regional RRC branch as a centre for future training of nurses in TB services.

3.2.5 DOTS Plus for management of MDRTB

Based on the available data from the regional lab, where about 1,200 samples were tested that year, in 2004 resistance to individual first line drugs was high (Streptomycin (S) – 64.7%, Isoniazid (H) – 21.6%, Rifampicin (R) – 48.5%, Ethambutol (E) – 10.8%). However, the prevalence of MDR‐TB (resistance to H+R) was 5.3% in new cases, and 19.8% among retreatment cases. Poly‐resistance was seen in 8% (3 drugs) to 14% (4 drugs) of cases.

Given the high burden of MDR‐TB, the regional TB institute is already providing 2nd line TB treatment (individualized treatment) using 2nd line drugs procured by the regional authorities (to diagnosed MDR‐TB cases and contacts of MDR‐TB cases). The primary treatment regimens have been extended to include 2nd line drugs in the Cat2B regimen (3HRZE + Prothionamide + Capreomycin/Kanamycin + Fluoroquinolone). However, with implementation of the GLC approved DOTS Plus programme, it is essential to review the existing guidelines, and to make decisions on guidelines for management of MDR‐TB cases beyond the GLC approved projects and procurement of 2nd line drugs.

In spite of the above‐mentioned challenges, a major contribution of the Federation/RCC towards management of drug‐resistant forms of TB has been in successfully preparing and supporting the region in its GLC application. The region is waiting for its first instalment of 2nd line drugs. Running up for the application, the Federation/RCC has undertaken lots of preparatory work to be eligible for GLC support. Some of the key successes are as under:

 Facilitating change from a diagnostic programme predominantly based on radiology to one based on quality assured microscopy services (38 laboratories established in the region, all covered under EQA – all positive and 5%‐10% of negative slides checked, with concordance of over 97%).  Facilitating change from individualized to standardized regimens following international and national guidelines.  Facilitating implementation of supervised short‐course treatment strategy, thereby helping to reduce treatment default to below 5%, thus reducing the risk of development of MDR‐TB.  Supporting regional laboratory to establish an accredited culture and DST laboratory capable of diagnosing MDR‐TB. The lab will be further strengthened to screen for 2nd line drug resistance.  Supporting in building a DOTS Plus unit at Gubkin, with state of the art infection control units – with technical support from CDC.  Preparing the coordination strategy between the RRC and TB dispensary for supervision of MDR‐ TB cases (the VNs are already supervising MDR‐TB cases)

Some of the concerns of the evaluation team as regards coordination between the two units for MDR‐TB patients are highlighted below:

 The strategy highlights that only those patients with 2‐3 consecutive smear/culture negative reports would be accepted. However, this may take up to 6‐9 months or longer. Given the estimated patient load, in‐patient capacity, and existing federal/regional treatment guidelines, the coordination strategy may be revisited (with technical guidance from RIPP, WHO or others) to facilitate reduction of duration of hospitalization and to provide convenient patient‐centred DOT services, whilst at the same time reduce risk of infection to staff.  There have been concerns expressed on continuity of psychological and legal support services. After the departure from the legal counsellor in 2005 and the psychological counsellor in 2006, the RRC in Belgorod has been unable to offer competitive salaries and fill these vacancies. However, MDR‐TB patients in particular often require professional psychological assistance to help cope with the nature and duration of their treatment. Continuity of counselling services is strongly recommended. Additional funds may be required to enable local RRC branches to offer competitive salaries.  The long duration of treatment not only puts a strain on MDR‐TB patients but also on their care providers. Consideration should therefore be given to the possibility of providing incentives or rewards for providers who care for this group of patients.

3.2.6 TBHIV collaborative activities

The prevalence of HIV in the adult population of the country is around 0.6% and among TB patients is between 0% ‐ 9.8%. The exact prevalence in Belgorod could not be obtained from available data sources, but discussions with regional staff suggest that HIV prevalence is around 37 per 100,000 population with 6 new cases reported in 2007 (in a population of 1.5 million).

A Voluntary Counselling and Testing Centre has been established in the TB dispensary and currently all TB cases are screened for HIV. A dedicated room for TB‐HIV co‐infected patients has been created within the TB dispensary, and collaboration with the AIDS centre is considered satisfactory. Currently there are no national guidelines for CPT or INH prophylaxis.

The Red Cross staff have been particularly involved in health education activities directed to the high risk and vulnerable groups, including HIV patients.

3.2.7 Links with the penitentiary system

With support from the RRC/IFRC, in 2002 a revised TB management strategy was started in the penitentiary system in Belgorod by introduction of a new recording and reporting system. The programme has also assisted in establishing quality assured microscopy and culture/DST labs in the penitentiary facilities.

Over the last 6‐8 years, the TB incidence among prisoners has decreased 3‐fold from over 3,500 per 100,000 prison inmates to about 750 per 100,000. TB cases in the detention centre (a reflection of case incidence in the community) has also decreased significantly from 30‐40 cases detected per year at the start of the programme to under 15‐20 per year. Currently there are only 4 reported TB‐ HIV co‐infected patients within the sector. There has, furthermore, been a reduction of infection rates among prison staff with only 4 staff reporting TB in the last 4 years.

To ensure continuation of treatment after release from prison, a list of TB cases is provided to the local TB dispensary who in turn share this information with the RRC. The RCC staff then visit the prisons, provide health education material and contact details for continuation of care (and legal/psychological support) after release.

The prisons have changed from breeding grounds to vital treatment areas. It is difficult at this stage to calculate the impact but it is probable that effective treatment in the prison sector is now a force for good. Much epidemiological work would be needed to analyze the risk/benefit ratio.

4. The way forward

4.1 Contribution of the IFRC/RRC TB project

The IFRC/RRC project for TB and HIV/AIDS control is now well established in 6 regions of the Russian Federation. The project is in line with the Federation’s objectives of supporting vulnerable population groups against poverty and disease due to TB and HIV/AIDS, by supporting national disease control strategies through organizational development and capacity building. The project supports building institutional capacity and has been instrumental in advocating for standardized diagnostic and treatment guidelines as outlined under the Stop TB Strategy.

The project has been successful in achieving most of its initial project objectives as outlined under sections 2.4 and 3.2, the most prominent being a reduction in treatment default rates, streamlining of DOT services in the regions, and strengthening of institutional capacity. As a consequence of the success of the TB project, the profile and standing of the RRC has improved and the RRC and VNS have been significantly strengthened. As mentioned by several key informants, it is being recognized that the RRC support is essential for maintaining current levels of care, and more and more local governments are willing to support RRC projects.

It is the opinion of the independent evaluation team that several key lessons should be learned from this IFRC/RRC project, which can be used by all partners introducing newer initiatives:

 Clearly laid down principles for collaboration and involvement (The Model): Initially, implementation of DOTS in the Russian Federation met with resistance due to differences of opinion on several technical issues related to TB case management under DOTS. One of the key reasons for the success of the IFRC/RRC project has been their ability to work in close coordination with the Ministry of Health (both at a federal and regional level), without causing friction or displaying rigidity on technical issues related to TB case management. The model followed clearly lays down the areas of collaboration and at the same time reassures all stakeholders of the facilitative and inclusive nature of the project. This flexible stance combined with farsighted leadership from IFRC and RRC has facilitated a positive change and acceptance of various components of the DOTS strategy. Over the years, the RRC staff have demonstrated high levels of responsibility, and have been able to facilitate introduction of innovations under the project in accordance with the political, economic and social environment.

 Need for collaboration with local/regional organizations to facilitate change: Given the long history of the RRC, its humanitarian work and its contribution to health care through its VNS 28

programme, the organization is very much a part of the national health system and thus was able to facilitate change from within, without being viewed as an external body.

 Facilitative advocacy through dialogue – building capacity of local teams by providing opportunities to share experience between national experts and outside world: The programme is largely managed and coordinated by Russian specialists, and the TB project not only provided the initial thrust for adoption of supervised short‐course chemotherapy within the Russian Federation, but also gave an opportunity and learning experience for national counterparts to work on international programmes with different agencies by opening and maintaining new channels of peer‐to‐peer communication with mutual respect for available expertise.

 Demonstration of effectiveness of social incentive in improving treatment compliance across different regions: The concept of psycho‐social support is now well accepted, especially when implemented by a humanitarian organization like the RRC. Through demonstrated effectiveness in reducing treatment default and improving quality of TB care, it has been accepted across all regions as an essential component of a comprehensive TB programme.

 Ability of Non‐Governmental organizations in delivering high quality services: The RCC TB project is one of the first collaborative TB projects of this scale implemented through an NGO in Russia. It is an apt example of a Public‐Private Partnership between a governmental programme and a civil society organization.

4.2 The Challenges

To be able to realize the TB related Millennium Development Goals by 2015, significant resources and efforts are required by the Russian TB programme and its partners, including the IFRC and RRC. Although with the help of the IFRC/RRC much progress has been made in recent years, the evaluation team has identified several issues of some concern. These include:

 The expansion of the revised TB management (DOTS) guidelines is not complete across all regions (DOTS detection rate for new smear positive cases at 44% in 2006 against the expected global bench mark of 70%).  Treatment success rates are far below the benchmark of 85% among new smear positive cases.  Mortality rates among notified cases remain high, presumably due to late diagnosis and high rates of drug resistance.  Current hospitalization policies may stretch the existing infrastructure and finances with large‐ scale implementation of DOTS Plus for MDR‐TB.

 The long duration of TB hospitalisation has significant social and economic consequences on families and communities.  The highly specialised and TB centred nature of clinical services at the TB hospitals, in combination with the extended length of hospitalisation for MDR‐TB patients, raises some questions on the ability to provide specialised treatment for TB patients with co‐morbidities.  There remains substantial fear for stigmatisation in the population due to inadequate information, coupled with strict TB laws.  There is a lack of trust among certain vulnerable sections of community with the public health system, preventing them from seeking treatment.  There is currently uncertainty about the roles of federal regional governments in TB programme administration, leading to variations in programme management policies across regions.  Uncertainties and delays in drug procurements, both for 1st line and 2nd line drugs, can result in stock‐outs in regions with poor fiscal status or politico‐administrative delays.

In addition, some of the challenges specific to the RRC component include:

 There is general agreement that the social support improves adherence to treatment and defaulter rates have decreased well below WHO recommended levels, but there is concern about the associated high costs. Growing evidence of the effectiveness of social support has resulted in an increasing number of patients being referred to the RRC branches. In order to contain costs the contents of the food packages have been halved compared to the initial phase. The cost in the rural areas at distribution sites is approximately 360 roubles per patient per month whereas in the city areas it is 600 roubles per month. However, given the limited resources and inflationary costs, the continued provision of adequate incentives to attract patients is a recognized challenge.

 The RRC project is only limited to regions where they have a strong local unit, thus excluding certain more difficult regions.

 Contributory support from the regional/local authorities is highly dependent on the political commitment and perceptions of the officer‐in‐charge. It is also dependent on the capacity of the regional RRC office. These variations can be seen across regions and are reflected in the programme’s effectiveness.

 A growing dependence on RRC support raises concerns about long‐term sustainability of services.

 There is sub‐optimal capacity in documenting and analyzing project outcomes.

4.3 Sustainability

With the extension of the USAID grant and further funding both from USAID and the Global Fund, it seems that for the immediate future funding is adequate. However, because of the complex TB situation, with increasing rates of MDR‐TB and HIV co‐infection, IFRC/RRC involvement will need to be long‐term and consideration needs to be structured towards a suitable endpoint. Ideally, TB care will be supported by the MOH and local authorities with RRC involvement only in times of need. Therefore, if in the future the federal and local authorities are able to institute a comprehensive TB programme that does not need the RRC/VNS input, this should be seen as a successful outcome. There will, however, be areas of need that are specifically suited to the skills and experience of the Red Cross. These needs will need to be identified and targeted to ensure continued involvement

4.4 Recommendations and Future suggestions for RC involvement

 Although treatment outcomes in the cohort of patients under RRC are good, it is recommended that the RRC considers extending support and counselling services to in‐patients to improve treatment compliance during the intensive phase of treatment. This also helps in identifying socially vulnerable families. Secondly, as the RRC works across regions, they should strengthen coordination networks across RRC offices for proper referral of transfer‐outs and, where possible, to enable follow‐up to obtain treatment outcomes to reduce transfer‐out rates to less that 3% (currently around 5‐6%). Lastly, continued pro‐active engagement with communities and health care providers (feldsher points, community health workers, mid‐wives, etc.) through information and education activities should be used to help reduce the delay in diagnosis and initiation of treatment.

 The TB/HIV interventions need to be extended across all regions.

 The RRC staff may be trained in aspects beyond TB care, essentially on soft skills in programme management like monitoring, advocacy and communication, etc.

 Regular inter‐regional meetings of RRC project staff may be conducted to share ideas and experiences to address local challenges, build capacity, and promote solidarity.

 It is recommended that barriers to the continued availability of a professional psychological counsellor to support patients during treatment are identified and removed.

 The IFRC/RRC should work with national and international experts and organizations in documenting and building evidence on the socio‐economic consequences of TB, and on the impact of RRC interventions on quality of care. The RRC has a wealth of data available which needs to be routinely analyzed and monitored. It is critical that all records at the regional level are maintained in electronic formats (computerized) for easy retrieval and analysis. Local medical institutions and research bodies may be helpful in conducting small‐scale studies/analysis.

 The IFRC/RRC should develop a comprehensive plan to engage with federal and regional authorities for increased commitment to co‐financing and budgetary support. Alternate avenues for fundraising, for example through engagement with industry (Confederation of Industries, World Economic Forum, etc.), would not only attract resources, but would also facilitate reduction of stigma within the private sector. Activities similar to TB Seal Campaigns or making individual/communities support TB patients or their families (Adopt a TB Family Campaign) may be considered.

 Lastly, In the event of fully state‐funded and strengthened TB services, wherein the RRC is no longer required, it will be important for the RRC to seek its best niche. Although the described

transition would be the hallmark scenario for the programme, it is likely that specific activities, such as the support of ex‐prisoners and migrants or homecare for PLWHA, remain best performed by the RRC. These first two groups, for instance, are often suspicious of state services and as a neutral civil society organisation, the RRC is better placed to provide services to such groups.

Annex 1: List of places visited and persons interviewed

Date Location / Organisation Informant 21 / 09 / 2008 Departure for Belgorod Ms. N. Ushakova – Head of Belgorod RRC office

RRC Branch Belgorod Dr. A. Stukalov MD – Chief Doctor of TB Dispensary 22 / 09 / 2008 Belgorod

TB Dispensary Belgorod Visit to facilities (?)

Office of the Deputy Mr. O. Polukhin (?) Governor of Belgorod Ms. Xxx – Head of Gubkin RRC office RRC Branch Gubkin 23 / 09 / 2008 Observation of multiple DOT visits Dr. xxx – TB doctor at MDR‐TB unit

TB facility Gubkin Visit to facilities

Visit to laboratory facilities

TB Dispensary Belgorod 24 / 09 / 2008 Dr. xxx – TB unit of penitentiary facility xxx

Return to Moscow 25 / 09 / 2008 WHO Dr. W.M. Jakubowiak MD Dr. Y. Yurasova

RIPP Dr. S.E. Borisov MD 26 / 09 / 2008 Dr. E.M. Belilovsky MD (WHO) USAID Dr. N.Y. Afanasiev MD MPH