Medicines Consumer Awareness Campaign Project Report

MEDICINES CONSUMER AWARENESS CAMPAIGN PROJECT REPORT

2017 This report is made possible by the support of the American People through the United States Agency for International Development (USAID). The contents of this report are the sole responsibility of Cardno Emerging Markets USA, Ltd. and do not necessarily reflect the views of USAID or the United States Government.

CONSUMER AWARENESS

CAMPAIGN PROJECT REPORT

Authors: Coalition for Health Promotion and Social Development (HEPS Uganda)

Submitted by: Cardno Emerging Markets USA, Ltd.

Submitted to: USAID/Uganda

Contract No.: AID-617-C-13-00005

DISCLAIMER The author’s views expressed in this publication do not necessarily reflect the views of the United States Agency for International Development or the United States Government.

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TABLE OF CONTENTS ABBREVIATION...... 4 ACKNOWLEDGEMENT ...... 5 EXECUTIVE SUMMARY ...... 6 1. BACKGROUND ...... 7 1.1 Introduction ...... 7 1.2 Project objectives ...... 8 2. PROJECT ACTIVITIES ...... 9 2.1 Project inception ...... 9 2.1.1 Constituting the project team ...... 9 2.1.2 Introducing the project to stakeholders ...... 9 2.2 Activities to increase awareness of median/average retail prices of selected essential medicines and health supplies ...... 10 2.2.1 Development and dissemination of IEC materials ...... 10 2.2.2 Community awareness sessions on medicine rights and responsibilities ...... 10 2.2.3 Scorecard by community representatives and RMOs ...... 10 2.2.4 Input tracking...... 15 2.2.5 Radio opinion polls ...... 16 2.2.6 Review of existing medicine price monitoring policies ...... 18 2.2.7 Monitoring of medicine prices ...... 19 2.2.8 Training of PHPs ...... 19 2.3 Activities to promote rational use of medicines by institutionalizing and sensitizing a clients’ charter for medicines at private drug sellers (PDS) ...... 20 3. PROJECT ACHIEVEMENTS, CHALLENGES AND LESSONS ...... 21 3.1 Project achievements ...... 21 3.2 Project challenges ...... 24 3.3 Lessons learnt ...... 24 4. CONCLUSION ...... 25 5. ANNEX 1: INPUT TRACKING MATRIX TOOL ...... 27 5.1 COMMUNITY EXPERIENCES (Tick correct response: Agree, Disagree, Don’t know) ...... 28 5.2 KNOWLEDGE (tick correct response: Agree, Disagree, Don’t know) ...... 29 6. ANNEX 2: NUMBER OF PEOPLE REACHED (ATTACHMENT) ...... 30

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ABBREVIATION

CSC Community Score Card DDI District Drug Inspector DHO District Health Officer HEPS Coalition for Health Promotion and Social Development HSDP Health Sector Development Plan JDSA Jinja Drug Shop Association KADSOOA Kamuli District Drug Shop Operators and Owners Association MDSOO Mukono District Drug Operators and Owners Association MOH Ministry of Health NDASP National Drug Authority Strategic Plan NDP National Drug Policy and Authority Statue, 1993 NDP National Development Plan NMP National Medicines Policy (NMP, 2015) NMS National Medical Stores NPSSP National Pharmaceutical Sector Strategic Plan III 2015-2020 PHPs Private Health Practitioners PSU Pharmacuetical Society of Uganda RMO Registered Medicine Outlets RUM Rational Use of Medicines UHF Uganda Healthcare Federation WHO World Health Organisation

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ACKNOWLEDGEMENT

Coalition for Health Promotion and Social Development (HEPS-Uganda) acknowledges the financial and technical support from USAID/ Uganda Private Health Support Program towards the implementation of the Consumer Awareness Campaign on Access to Essential Medicines. This project was implemented in Mukono, Jinja and Kamuli districts for 8 months in 2017. We thank the political and technical leadership in the three districts. We are particularly thankful to the Chief Administrative Officers (CAO), District Health Officers (DHOs), District Drug Inspectors (DDIs), District Community Development Officers (DCDOs), health facility in-charges, Registered Medicine Outlets (RMOs), and Community Monitors (CMs) in the three districts. We recognize the collaboration between HEPS-Uganda and TRAC FM and media houses, specifically Radio Simba, Kamuli Broadcasting Services (KBS) and Basoga Baino (Baba) FM that supported the empowerment of communities and implementing media activities under this campaign. Appreciation goes to Ministry of Health (MOH) Pharmacy Division, National Drug Authority (NDA) Pharmacovigilance Unit, Pharmaceutical Society Uganda (PSU), Uganda Healthcare Federation (UHF) and civil society partner organizations for the support given during the implementation of this project. We appreciate all HEPS staff for the effort invested in designing and implementing the project, especially the core project team – Mr. Denis Kibira, Mr. Brian Wafire, Mr. J.B. Luyima, Ms Jackline Mutimba, Mr. Anthony Sebagereka, Mr. Bestason Aliyo, Mr. Arthur Mweruka, Mrs. Prima Kazoora and Ms. Esther Joan Kilande.

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EXECUTIVE SUMMARY

USAID/Uganda Private Health Support Program in collaboration with Coalition for Health Promotion and Social Development (HEPS-Uganda) implemented a campaign to increase awareness on essential medicines among health consumers and private health providers, including operators of Registered Medicine Outlets (RMO). The project was implemented in the districts of Kamuli, Mukono and Jinja over a period of nine months (January-September 2017). The campaign used a community scorecard (CSC) to sensitize and engage community representatives and RMOs operators to design and implement community-driven interventions to increase awareness of median/ average retail prices of selected essential medicines and health supplies; and generate discussions of medicine issues through the media. At the national level, project team undertook a review of the existing medicine price monitoring policies, and initiated the process of institutionalizing a clients’ charter for medicines at RMOs. The project has scored achievements in the areas of revival of RMO associations and their assumption of the role of self-regulation; some marginal reduction in medicine prices; putting the issue of medicines on the community discussion agenda; and improved communication between RMOs and patients. The project has sensitized a total 2,160 (Mukono – 414, Kamuli – 1,139 and Jinja- 607) of RMOs and community members on rights and responsibilities. Stakeholders at community, district and national level will build on these successes to sustain change and roll-out to other districts

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1. BACKGROUND

1.1 Introduction World Health Organization (WHO) defines essential medicines as those medicines that respond to the priority health needs of a specific population. They should be available at all times in adequate amounts, be affordable, and have a proven efficacy, quality and safety. However, 37% of all health expenditure in Uganda is met by household majorly out of pocket1 at PHPs which are the main and first contacts of households contributing up to 46% of health care provision (MoH, 2011). Ministry of Health (MoH) would like to increase access to health services by exploiting private sector geographical reach, efficiency, work ethic, financial mobilization expertise, personnel and physical facilities.2 Private health practitioners are considered more responsive to demand but their charges for consultation, investigatory tests, hospitalization and pharmaceuticals discourage households from seeking care when it is needed. For households, high out-of-pocket payments can have clinical repercussions, when people in need of medicines forego or interrupt their treatment; economic repercussions, when high out-of-pocket expenditures reduce household spending on other essential items; and societal repercussion, when community divisions stemming from inequitable medicines access due to cost.3 On the other hand, when medicines are available they need to be used appropriately by all involved, including prescribers, dispensers, households and patients. Multiple factors contribute to their misuse, including a lack of regulatory enforcement, insufficient disease and treatment knowledge, and unintended effects of health and pharmaceutical system policies. Ensuring the appropriate use of medicines is critical to reducing disease burden in low income countries like Uganda, to preserving the future efficacy of proven treatments, and to spending scarce resources wisely.4 To contribute to the national efforts to make medicines not only affordable to health consumers, but also to their appropriate use, USAID/Uganda Private Health Support Program in collaboration with Coalition for Health Promotion and Social Development (HEPS-Uganda) implemented a campaign to increase awareness on essential medicines among health consumers and private health providers, including operators of registered medicine outlets (RMO). The project was implemented in the districts of Kamuli, Mukono and Jinja over a period of nine months (January-September 2017). The campaign sensitized health consumers and RMOs operators about medicine policies in Uganda, health rights and responsibilities relating to medicines, medicine prices as well as other information necessary to improve rational use of medicines and increase affordability of essential medicines and other health products in the private sector. The rest of this report summarizes the project activities and their outcomes, challenges and recommendations.

1 NHA 2013 2 HSDP 2015-2019 3 Bigdeli M, Peters DH and Wagner AK (Eds.) 2014. Medicines in Health Systems: Advancing access, affordability and appropriate use. Alliance for Health Policy and Heath Systems Research, and WHO. http://www.who.int/alliance-hpsr/resources/FR_webfinal_v1.pdf 4 Bigdeli M, Peters DH and Wagner AK (Eds.) 2014. Medicines in Health Systems: Advancing access, affordability and appropriate use. Alliance for Health Policy and Heath Systems Research, and WHO. http://www.who.int/alliance-hpsr/resources/FR_webfinal_v1.pdf

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1.2 Project objectives The project had two main objectives:  To increase awareness of median/ average retail prices of selected essential medicines and health supplies  To promote rational use of medicines by institutionalizing and sensitizing a clients’ charter for medicines at private drug sellers (PDS)

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2. PROJECT ACTIVITIES

2.1 Project inception

2.1.1 Constituting the project team Before the start of the project activities, the project team was constituted, consisting of the Project Advisory Team, Project Coordinators and field team. The Project Advisory Team was composed of three members of HEPS management – the Executive Director, Head of Training and Capacity Building, and the Director of Operations – and its mandate was to oversee project implementation; ensure that deliverables are met; and to provide overall quality assurance by reviewing all information, education and communication (IEC) materials and reports. The Project Coordinators were two: Ms Esther Joan Kilande and Mr. Anthony Sebagereka. Their role was to ensure timely completion of the project activities, delivery of the expected results, and to represent the project on all important stakeholder meetings. The Field Team was responsible for field duties: travel to the assigned district after training; identify community monitors; build rapport with the district stakeholders; attend district health sector planning meetings; create/ initiate associations of RMOs; implement the community scorecard (CSC); monitor activities on a monthly basis; submit monthly and quarterly reports; and organize radio talk shows.

Project team

NAME OF CONSULTANT POSITION PROJECT ROLE

Denis Kibira Executive Director Prima Kazoora Head of Training and Capacity Building Management Team Lillian Mujuni Director of Operation Kilande Esther Joan Program Officer Project Coordinators Sebagereka Anthony Pharmacist Jackline Mutimba Monitoring and Evaluation Officer Monitoring and Evaluation Officer Bestason Aliyo Accountant Accountant

Arthur Mweruka Administration assistant Administration assistant

2.1.2 Introducing the project to stakeholders The project team held two meetings with National Drug Authority (NDA), on 24th November and 1st December 2016. The purpose of the first meeting was to introduce the project to NDA. The meeting also chose a project focal person at NDA and recommended a joint meeting with Uganda Healthcare Federation (UHF) and an update of the national formulary to include standard prices of selected essential medicines and supplies. The meeting further agreed to revise the training manual, to finalize the clients’ charter together and hold weekly meetings throughout the campaign period. The second meeting was chaired by Ms Hellen Ndagijje (NDA). The meeting was informed that the national formulary was still under review and that it was possible to advocate for the inclusion of standard/ indicative prices of selected essential medicines and supplies. The meeting also agreed to revise the training manual to include components on drug resistance, reporting on quality of care, medication errors, disposal issues and adverse medicine reactions. The meeting emphasized the need to work with UHF to update/finalize the clients’ charter for medicines; an electronic platform suitable for community reporting, noting that TRAC FM platform was timely; and to formulate poll questions for the campaign. The meeting reviewed IEC materials.

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The project team conducted inception visits to the three districts – Kamuli, Jinja and Mukono. The meetings were conducted in January 2017, to introduce the project to the district leaders, including the District Health Officer (DHO), Resident District Commissioner (RDC) and Chief Administrative Officer (CAO) as well as sub-county leaders. The Project team solicited support from political and technical leaders at district and sub county local government levels; identified community leaders/representatives to participate in the CSC processes; and set up project implementation. The team introduced the CSC process to the district and sub-county officials through individual meetings. The introductory meetings served to orient the officials on the CSC methodology. The visits were also be used to identify and select community representatives to participate in CSC at sub-county level. The composition of trainees included active community leaders, youth and people living with disabilities. 2.2 Activities to increase awareness of median/average retail prices of selected essential medicines and health supplies

2.2.1 Development and dissemination of IEC materials To promote affordability of services in the private sector, HEPS-Uganda developed and disseminated information, education and communication (IEC) materials, including 150 copies of the training guide and 450 copies of a flier titled, “Know the cost of your treatment”. The training guide was adapted from an existing version developed and used by HEPS-Uganda in previous community sensitization activities on health rights and responsibilities. The training guide and flier were printed after incorporating stakeholder inputs. This flier has been disseminated widely in Jinja, Mukono and Kamuli districts and has led to standardizing medicines prices in some sub counties and RMOs have been guided to buy medicines from recognized distributors which has contributed to improved affordability of RMO services. Other IEC materials include 2 pull up banners and 2 PVC banners, 450 fliers on rights and responsibilities.

2.2.2 Community awareness sessions on medicine rights and responsibilities A total of 159 “community monitors” and RMOs, and 20 journalists were trained on rights and responsibilities. The project applied a Community Score Card (CSC) methodology to assess the performance of RMOs and the factors influencing affordability of essential medicines in the private sector. The CSC was modified to accommodate and tap into the strengths of TRAC FM, an internet-based software application that facilitates live, interactive SMS polls during radio talk shows to capture and track community perceptions towards Medicines. CSC was part of the project implementation strategy aimed at developing innovative and sustainable models to improve health service delivery. As a participatory assessment tool and in line with principles of good governance, community score cards aim not only at revealing the normative “good” but provide essential information and feedback for improved management decision-making, allocations, and service delivery in health overall. The score card empowered communities to hold duty bearers accountable following the steps. The first step of the CSC process involved introducing the methodology to the district officials through meetings. The introductory meetings were purposely organized to orient the officials on the CSC methodology. It also served to get political support of the leaders towards this process. This was followed by identification, selection and training of community monitors.

2.2.3 Scorecard by community representatives and RMOs Two rounds of CSC, with a four-month gap, were conducted by community members and health workers to monitor services. The process involved mapping RMOs, community monitors and other community representatives to participate in the CSC process; identifying key indicators affecting affordability of RMO services and assessing the general performance of RMOs; convening of sensitization and dialogue meetings (community evaluation of RMO services, self-evaluation of RMOs and interface meetings), dissemination of IEC materials. The first CSC sessions were held in March and April 2017.

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The CSCs for the different groups were done separately. Results of the first score card have been compared with those of the second score card to assess the changes in family planning delivery. On average, 50 participants per catchment area participated in the CSC dialogues. A total of 36 sub counties/ municipal divisions were represented in this process (12 sub counties and 2 municipal divisions in Kamuli district, 8 sub counties and 2 divisions in Jinja district and in 12 sub counties in Mukono district. Table: 1: Project scope No. of Community No. of medicine outlets Subcounty Monitors selected selected Kamuli district Namusagali 2 2 Mbulamuti 2 2 Balawoli 2 2 Nawbigulu 2 2 Kagumba 2 2 Namwendwa 2 2 Bulopa 2 2 Bugulumbya 2 2 Nawanyago 2 2 Wankole 2 2 Kisozi 2 2 Kamuli municipal (Northern division) 2 2 Kamuli municipal (Southern division) 2 2 Jinja district Mafubira 2 2 Busede 2 2 Buyengo 2 2 Butagaya 2 2 Buwenge Rural 2 2 Budondo 2 2 Buwenge TC 2 2 Bugembe Town Council 3 3 Kakira Town Council 2 2 Mpumude-Kimaka division 3 3 Masese Walukuba division 3 3 Mukono district Kasawo 2 2 Nabbaale 2 2 Nama 2 2 Kyampisi 2 2 Nakisunga 2 2 Kimenyedde 2 2 Ntenjeru 3 4 Namuganga 2 2 Mpunge 2 2 Mpatta 2 1 Ntunda 2 2 Nagojje 2 2 Total 76 76

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All the CSC sessions were facilitated by HEPS-Uganda’s project team, with the support of community monitors and the district leaders. The indicators were assessed based on a scale of 1-5 (very bad, bad, fair, good and very good). A zero score meant that the group did not rate the variable in question during the first cycle of the CSC. The specific indicators are presented against the district in which the CSC participants mentioned them. The rated scores and the qualitative assessment were based on the relevant MOH norms for the various levels of health facilities. The primary participants in this process were community monitors, individual men and women, district leaders, RMO. Participants’ rating of self-medication among clients There is low awareness about rational use of medicines at community level. Most health consumers self-medicate; they claim to know what they want when accessing a service in a medicine outlet, making it difficult for the providers to implement the “test and treat” policy. There are widely held cultural and religious beliefs and myths about medication that have resulted in poor drug adherence/compliance. For example, pyomyositis5 patients believe that it is unnecessary to take medication, while the practice of not bathing children with measles is also widespread. Table 2: Participants rating of self-medication among clients

District Cycle 1 Cycle 2 Reason for the scores (Cycle 1) Reason for the scores (Cycle 2)

Jinja 1 1 Self-medication is common among clients; Community members continue to self- in most cases they under dose or over medicate despite of the ongoing Kamuli 2 2 dose themselves. This has strongly led to sensitization. drug resistance and sometimes minor/ severe complications among health Mukono 2 2 consumers

Table 3: Participants rating on under dosing

District Cycle 1 Cycle 2 Reason for the scores (Cycle 1) Reason for the scores (Cycle 2)

Jinja 2 2  -Negligence among patients Sensitization has been ongoing however people are still ignorant and continue to  -Little knowledge on rational use of Kamuli 2 1 under dose medicines. High poverty levels

Mukono 1 2

There is sale of incomplete doses: Full/complete treatment was reported to be rare at private medicine outlets. They reportedly share out one dose to more than one client which is not a good practice. The majority have not undergone inductions/ refresher trainings. One RMO operator noted that, “A client comes with 200/= and they want a full treatment therefore you end up giving only half a dose which is dangerous to the patient.”

A community member in Jinja lamented:

5 Pyomyositis is a bacterial infection of the skeletal muscles (the muscles used for movement) which results in a pus-filled abscess. An abscess is a collection of pus in any part of the body. In most cases, the area around an abscess is swollen and inflamed. Signs and symptoms of pyomyositis may include pain and tenderness of the affected muscle, fever, and abscess formation. If left untreated, the abscess may extend into the bone and joint or blood poisoning may occur. Treatment generally includes surgical drainage of the abscess and antibiotics. Consumer Awareness Campaign Project Report 12

“They are after money therefore whatever a client requests for is what is given, even when it doesn’t make a complete dosage yet this leads to drug resistance and later on death”. Table 4: Participants rating of licensed providers

District Cycle 1 Cycle 2 Reason for the scores (Cycle 1) Reason for the scores (Cycle 2)

Jinja 1 2 Majority of RMOs lack funds to pay taxes The score is shifted slightly because that is why they stay unlicensed for the registered medicine outlets Kamuli 2 2 instance only 188 drug shops were increased from 188 to 206 by the reportedly licensed in Jinja district. second round of assessments in Mukono 3 3 Kamuli. However, there are still unlicensed providers operating in Kamuli district. Some drug shops still lack start-up capital which has made them to fail to pay up the licensing fees.

There is a high prevalence of unlicensed providers in the private sector, especially among class C drug shops, who are not following National Drug Authority (NDA) guidelines in their operations. Information from the District performance report, 2016 indicated that a majority of the unlicensed medicine outlets are unknown. They have unqualified staff operating illegally especially at night; they sell medicines they do not qualify to sell, such as antibiotics; and do not have clinical guidelines (reference books) and are therefore not informed about new trends in disease management.

Table 5: Participants rating of prices for medicines

District Cycle 1 Cycle 2 Reason for the scores (Cycle 1) Reason for the scores (Cycle 2)

Jinja 1 2 The high taxes (trading license fees) have The score did not improve because led to high prices for medicines. the increasing stock outs of essential Kamuli 1 1 medicines in public health facilities “We have to pay rent and at the end of the has pushed health consumers to the month we must have reasonable profits private facilities and yet services are Mukono 1 1 therefore unless some of the taxes are expensive and not affordable by reduced, the cost will always go to the end everyone. user”.

Participants highlighted over-pricing of medicines by private health providers: For example, in Mukono district, providers’ source ACTs in a range of UGX 1,700-2,000 per adult dose from distributors, and sell the same between UGX 3,000-6,000. The providers attempted to justify the high prices by pointing to high taxes and bills they have to meet, such as rent and salaries. The high prices have forced some patients to resort to market vendors for services, and to buy incomplete-doses. It was also noted that prices of medicines are not standardized across RMOs. The prices for medicines are not uniform because RMOs buy medicines at different prices from different distributors. Also their costs of operation differ (rent, taxes, salaries, utilities, etc.).

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Table 6: Participants rating of High taxes imposed on RMOs

District Cycle 1 Cycle 2 Reason for the scores (Cycle One) Reason for the scores (Cycle Two)

Jinja 1 1 RMOs pay taxes to NDA and local The score is still very bad because we governments. NDA charges UGX 112,500 have been meeting with parish chiefs to Kamuli 1 1 rural, UGX 16, 7500 urban; Local standardize trading license fees and to governments charge trading license fee of assess drug shops, but we are yet to Mukono 0 0 UGX 40,000 per year. succeed. Other costs include paying staff UGX 400,000/= per month.

Taxes and fees imposed on RMOs are not uniform. For instance, in Kamuli rural RMOs are charged UGX 30,000 yet in some sub counties, it is UGX 20,000; urban RMOs are charged up to UGX 150,000 per year. In most cases, the fees depend on the size of the outlet. NDA charges UGX 112,500 for startups in rural areas, and UGX 167,500 for those in urban areas. The RMO owner also has to pay staff, an estimated average of UGX 400,000 per month. All these taxes, fees and costs contribute to high medicines prices and affects affordability of services offered.

“We have to pay rent and at the end of the month we must have reasonable profits therefore unless some of the taxes are reduced, the cost will always go to the end user. Additionally, government policies restrict (the range of) medicines we sell, which has affected our overall earnings.” – RMO operator

Table 7: Participants rating of trained RMO practitioners

District Cycle 1 Cycle 2 Reason for the scores (Cycle 1) Reason for the scores (Cycle 2)

Jinja 2 3 PHP have limited knowledge on new The scores have improved because DDI medical treatment modalities and have been training at sub county level Kamuli 1 2 records management. Mukono district last had a training for RMOs two years Mukono 1 3 ago.

RMOs have limited knowledge on new medical treatment modalities and knowledge in record keeping is also lacking. Mukono district last had training for RMOs two years ago, and RMOs in Kamuli were last trained in 2012 and are never monitored.

“I never take record of what is dispensed and what is in stock because first of all we lack reporting templates and secondly the district does not consider this data” – PHP

Negligence and laziness among RMOs to take record of drugs purchased indicating the batch numbers, expiry dates and the source of the supplies. RMOs do not take record of what medicines are in stock and what they have sold off in a day. Negative competition among RMOs; RMOs hardly refer clients to other RNOs. Even when medicines are out of stock they improvise because they fear losing clients. Some do not want to refer complicated/ bigger cases they cannot handle; some are after money, a situation that has led to death among clients. This negativity is very common because RMOs associations are week.

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Routine monitoring of medicine outlets by the district and NDA is limited, which has contributed to existence of unqualified providers and unlicensed outlets. NDA and the district inspectors are harsh towards RMOs. RMO owners hide whenever their inspections. RMOs also lack inspection books making it difficult to tell when the monitoring happens. RMOs complained the inspection done is not friendly. Medicine outlets are day care centres providing over the counter services. However, many of them admit patients and even provide surgical services. The district drug inspector (DDI) of Mukono informed participants of a case where one culprit operated on a client three times and the client died. The said practitioner has reportedly been imprisoned. Private providers in Mukono confirmed that majority of the unlicensed medicine outlets have unqualified providers and they normally treat a condition using very many medicines, some of them unnecessary, at the same time. Poly Pharmacy was named in this practice. Storage facilities are not up to standard. Medicines are supposed to be kept in 25-30C. However, in practice the medicines are kept under direct heat. This has affected medicines efficacy and quality of care provided to clients. Medicine outlets are normally fully packed/ stocked to the maximum and in most cases medicines expire. The district has observed that some private providers tamper with the expiry dates reportedly “to avoid loses they have tampered with the dates to make profits”. Community members noted that medicines are sometimes mixed up with other grocery products in drug shops which make the drugs to get contaminated affecting its quality. Upon completion of the community and health worker scorecards, interface meetings were convened for health users, community monitors, service providers and local government officials. Representatives from each group were nominated to present findings and recommendations. The main purpose of the interface meetings was to share the scores generated by service users and service providers to ensure that feedback from the community is taken into account and that measures to improve RMO service delivery are devised. At the end of the interface meetings, joint action plans were drawn by the participants to address the identified gaps in RMO services. Following the conclusion of the interface meetings, follow-up of community actions was done by community monitors and project field officers. Issues beyond the sub-county level were forwarded to district leaders, and those beyond district, were taken up for national level advocacy. Three community action plans were developed, implemented and monitored on a monthly basis. Action plans were reviewed after a period of four months (the first round in February 2017 and the second in June 2017). Community monitors and field officers supported the implementation of community action plans on a monthly basis.

2.2.4 Input tracking This involved an assessment of RMOs. The exercise started with development of an input tracking matrix which had two key components, i.e. community experience in accessing RMO services, and community knowledge on rights and responsibilities. The tool was applied at household level, 600 respondents, 100 per district per round. Two rounds of input tracking were done during the project period (March/April and August), assessing community knowledge, attitudes and practices regarding access to medicines and services from RMOs as well as their knowledge on rights and responsibilities. The results show that overall, the proportion of respondents who report that private drug providers clearly provide information on use of medicines increased only slightly, from 71% to 73%. Mukono and Jinja registered marked increases, from 62% to 93% and from 56% to 71%, respectively. The proportion of respondents who agree that medicines envelops are clearly marked with the name of medicine, dose and duration of treatment also increased slightly, from 60% to 66% on average. The largest increase was registered in Mukono, from 55% to 86%.

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The proportion of respondents who report that private health providers take into account their ability to pay when they decide which medicines to sell increased markedly, but remained generally low, from 21% to 37%. Likewise, the proportion that report that medicines costs in private drug outlets in their area are affordable, was equally low, having increased only marginally, from 18% to 20%, on average. The highest proportion was registered in Jinja, at 37%, from 25%. However, the proportion of respondents who report that the quality of services delivered by private health care providers in their neighborhood is good increased significantly, from 46% to 65%, overall. Mukono registered the biggest increase, from just 34% in the baseline survey, to 97% in the endline survey. The results further show that the practices improved. For instance, the proportion of the respondents who report that they only go to a licensed health facility such as RMOs to get their medicines more than doubled, from 33% to 72%, with the biggest improvement happening in Kamuli (from 17% to 68%). The proportion of respondents who report to report to a health provider when they get bad reactions with medicines, increased from 58% to 76, with respondents in Mukono district jumping from 16% to 97%.

2.2.5 Radio opinion polls TRAC FM is an online software platform that HEPS-Uganda used to amplify voices of citizens, track reports and collect opinions. The platform is designed to enable citizen-centered interactive radio polls. TRAC FM enabled citizens to participate in meaningful public debates through interactive radio shows and SMS on Radio Simba and on Baba FM. Opinion polls were conducted over a period of a month and three cycles were conducted starting from January 2017 to August 2017. A set of four questions were asked in each cycle. The same questions repeated in the subsequent cycle. This enabled the project team to track changes in attitudes towards RMO services. A total of 12 radio talk shows were held and TRAC FM held 6 opinion polls on a set of health rights and responsibilities-related questions between January and August 2017. Over a two-month period, listeners of Radio Simba and Baba FM, were asked where they normally get their medicines when they fall sick; whether they ask the health worker what medicines they have prescribed and what it treats; and where they went when they experienced an adverse drug reaction. The results of the polls are In photo: HEPS staff Mr J.B. Luyima and NDA staff Mr Julius summarized in the graphics below. Mayengo during a radio talk show on Radio Simba

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Results indicate that most of the respondents get their medicines from drug shops. It is notable that a higher proportion of women get their medicines from the public sector, where services are free; while more men get medicines from the private sector, where they are only accessible with money.

A large proportion of respondents (45%) indicated that they do not bother to ask the health provider what the prescribed medicine is and what it treats.

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About 37% of the respondents reported that they had never experienced an adverse drug reaction. For those that experienced an adverse drug reaction, about one in four people (24%) did nothing, while 16% talked to a friend, relative or neighbor. On whether people know where to report substandard medicine, 90% of responses received at Baba FM showed that they do, while 67% of responses through Simba FM showed that they do not know.

2.2.6 Review of existing medicine price monitoring policies The project team undertook a review of the existing medicine price monitoring policies. The policies reviewed include:  WHO Guidelines on Country Pharmaceutical Pricing Policies;  National Development Agenda (Vision 2040)  National Development Plan II (2015-2020)  Health Sector Development Plan (HSDP 2015/16-2019/20)  National Medicines Policy (NMP, 2015)  National Pharmaceutical Sector Strategic Plan III 2015-2020  The National Drug Policy and Authority Statue, 1993  National Drug Authority Strategic Plan 2016-2021

The analysis found that while regulation of medicine prices has not been well-explored in Uganda given the country’s history of a free market economy, there were examples of price control of different forms:  Ministry of Health has issued recommended prices for ACTs, putting an adult dose at UGX4,000 for the Global Fund-subsided Green Leaf brand of ACTs. Surveys have shown that actual prices range between UGX3, 500 -5,000.

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 Ministry of Health has issued recommended prices for zinc and ORS, used in the treatment of diarrhea in children. The products have been marketed through Uganda Health Marketing Group (UHMG) using social marketing strategies.

Even then, the existing national policies and strategies are not elaborate on the framework to regulate prices and do not specify whose mandate it is to regulate prices of medicines. They have been drawn in a general policy framework of a liberalized, free market economy. The analysis noted that the need to ensure access to affordable medicines is emphasized in many policy documents and recommended that these provisions should be leveraged to regulate prices within the context of a liberalized market, borrowing from the recommendations of WHO on policy options for price regulation. Specifically, advised the development and enforcement of generic policies in the public and mission sectors; publishing “indicator” or “recommended” prices and price mark-ups for commonly used EMHS in the mass media; and conducting price surveys and publish findings. Activities with UHF to finalize the medicine client’s charter HEPS team engaged UHF on 12 September 2017 and agreed on the roadmap to finalize and have the Charter institutionalized. The meeting agreed on the need to compile the benefits/ incentives for the RMOs explaining how the will benefit if the medicine Charter is institutionalized. Finalize the charter and have it well packaged and have it reviewed and disseminated to reach the last mile clientele and have a clear dissemination plan for the charter. UHF to sell the idea of the Charter to its members specifically the private sector associations especially those in slum areas and hard to reach communities. The draft charter has been updated and shared with NDA for further review.

2.2.7 Monitoring of medicine prices The project monitored trends in medicine prices in the three districts to compare prices of essential medicines. The checks were done by the project team and community monitors through impromptu visits to RMOs disguising as potential clients. This exercise has been a basis for sensitizing the drug shop operators on fair pricing. The tracking of medicine prices has also enabled HEPS-Uganda to engage the district health office, the DDIs and stakeholders.

2.2.8 Training of PHPs Up to 150 PHPs were trained on new treatment modalities and standards as laid out in the NDA guidelines and regulations. This session was conducted by the DDI Mukono at a refresher training organized by HEPS-Uganda on 28th July 2017 at District Offices. The DDI advised all PHPs to access and read the Uganda clinical guidelines to understand and get updated on the new treatment modalities. More trainings were conducted in Jinja and Kamuli district by the District Drug Inspectors.

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2.3 Activities to promote rational use of medicines by institutionalizing and sensitizing a clients’ charter for medicines at private drug sellers (PDS) At national level HEPS worked towards finalizing the draft medicine charter. A stakeholder meeting was convened and was attended by representatives of Ministry of Health, NDA, Pharmaceutical Society of Uganda (PSU), civil society organizations (CSOs), and the district local governments of Mukono, Jinja and Kamuli. District level stakeholders from Mukono, Jinja and Kamuli have been engaged in this discussion/activity. The objective of the charter is “to strengthen community participation in ensuring access to quality, appropriate and affordable medicines and services at private drug sellers.” The draft charter suggests a set of standards for private medicine outlets, with regard to the quality of the premises/buildings, arrangement of medicines, minimum qualifications of personnel, dispensing standards, and client services. During the stakeholder meeting, the key suggestions were:  There is need to consider and harmonize the Medicines Clients Charter with existing regulatory and guidance frameworks.  Key terms and phrases in the draft should be defining, e.g. “general hygiene”. Some phrases were changed, e.g. “private drug sellers (PDS)” to “private drug providers”.  Standards were suggested, e.g. “white” for walls and ceiling, as well as for uniforms, as well as ventilation for the structure, arrangement of medicines, qualifications of personnel, etc.  The need to emphasize cleanliness was highlighted.  RMOs need to provide additional information to clients, on precautionary information, drug interactions, medicine contra-indications, and the need to report adverse drug reactions to health professionals. Representatives of different institutions gave their commitment to the Medicines Clients Charter, including Ministry of Health, UNHCO, and PSU, NDA as well as the local governments of Mukono, Jinja and Kamuli. HEPS-Uganda committed to addressing all comments from the meeting participants and to follow-up with each stakeholder for additional comments and input, and committed to working closely with the Ministry of Health Pharmacy Division to reach a consensus content so that the Charter is owned by Ministry of Health and other stakeholders.

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3. PROJECT ACHIEVEMENTS, CHALLENGES AND LESSONS

3.1 Project achievements Community empowerment and discussions: Using the TRAC FM platform, this project transformed citizens from passive listeners to active participants in discussions regarding access to essential medicines. The tool has been effective in collecting data and tracking the needs and attitudes of people around medicine issues and RMO services. Revival of RMO associations: In Kamuli district, 16 sub county associations have been revived and one district association (KADISOA). The establishment of these associations ensures a good functional platform for PHPs to discuss medicine prices and other issues. During dialogue meetings with the PHPS, the chairperson for the associations have suggested that since drug shops operating in the same geographical area incur similar costs for trading licenses and NDA fees, they should agree uniform prices for key commodities sold to the community. RMOs in Bugulumbya subcounty in Kamuli district have demonstrated that this is possible; they have set similar prices for the medicines they sell. Below is a table showing a sample of tracked medicine prices for some PHPs in Bugulumbya sub-county who are also members to the subcounty RMO association:

Table 8: Prices of medicines by RMOs in Bugulumbya subcounty, Kamuli district Name of drug ACT Amoxyl Contri ORS & Zinc Diclo Ceftiria Inj Salbu shop Maama Peace 4500 4200 2500 2500 3500 2500 10,000 Mbogo 4500 4200 2500 2500 3500 2500 8000 Kusasira 4500 4200 2500 2500 3500 2500 10,000 E&D 4500 4200 2500 2500 3500 2500 8000 ST. Mark 4500 4200 2500 2500 3500 2500 9000 Nile 4500 4200 2500 2500 3500 2500 8000

Mukono district launched the district association, 200 PHPs attended the inauguration and from the district the following attended CAO, DHO, RDC, NDA regional staff, and DDI. In this meeting, the RDC directed that every drug shop owner must be registered with the association.  The CAO committed to provide funds for refresher training of PHPs on standards and other new guidelines with their profession and health service delivery.  The CAO also committed to provide the DDI with security and other related man power and funds to intensify monitoring the drug shops and all other medicines out to ensure that they adhere to standards.  The new executive was tasked to conduct elections executive committees at all sub counties and divisions within Mukono district.  The association committed to monitor standards within themselves and report unlicensed drug shops to the district drug inspection immediately. They want weed out unregistered drug shop operators within their ranks.

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Reduction in medicine prices: The project achieved a reduction in medicine prices on essential medicines sold by RMOs. The project monitored trends in medicine prices in the three districts to track price trends. A recent assessment conducted in July in Jinja district revealed that 15 PHPs sell ACTs between UGX 3500-4500 and only four facilities namely, Mwinike drug shop in Buwenge town council, Calvary drug shop in Wanyange subcounty, and Nabweteme drug shop and Erunasser drug shop in Mafubira sub-county were selling ACTs in the range of UGX 5000-6000. This exercise has also been a basis for sensitizing the drug shop operators on fair prices. The tracking of medicine prices has also enabled HEPS-Uganda to engage the district health office. The DDI Jinja was engaged on the issue of Mafubira having high prices for medicines, when an assessment was done in mufubira, the DDI Mafubira realized that PHPs prices for medicines in this sub county are high because they are facing high licensing charges from the town council. HEPS-Uganda has engaged members of RMO associations and the subcounty local governments over the issue of high trading license fees. The DDI and association members have engaged subcounty leaders in Kisozi, Balawoli and Nawanyago on the problem of high license fees which have been translated to health consumers through higher medicine prices. In these subcounties, it has been agreed that PHPs will be assessed according to the value of the businesses effective 2017/18 financial year. HEPS Uganda will continue to follow up on the commitments of the subcounty local governments and also to continue advocating for harmonization of medicine prices. Increase in the number of registered medicine outlets: Registered medicine outlets increased from 188 to 206 in the second round of assessment as reported by the DDI Kamuli district. This followed as a result of the various dialogue meetings that were conducted in the respective subcounties in Kamuli district and the revival of the subcounty association. However, there are still unlicensed providers operating in Kamuli district. Self-regulation: Members of Kamuli District Drug Shop Operators and Owners Association (KADSOOA) moved in four subcounties identifying drug shops that do not meet the standards, i.e. poor premises, unqualified staff, etc. They have reported them to the DDI. The team found that in Bulopa subcounty, out of the 40 drug shops visited, 15 were not meeting the standards; in Bugulumbya subcounty, out of 45 visited, 20 were not meeting standards; in Wankole subcounty, 15 were not meeting standards and in Balawoli subcounty, out of 65 outlets visited, 30 were not meeting the standards. These have been reported to the DDI and have been given an ultimatum of three months to meet the standards required or else they will be closed. HEPS-Uganda followed up on the issue with the KADSOOA Chairperson Mr. Simon who confirmed that facilities that were given time and did not improve were closed. In Bugulumbya subcounty, out of eight RMOs that were warned, five improved and three failed and were closed. In Kagumba subcounty, six facilities were advised to improve and within the periods set, four improved but two did not and were closed by August 2017.

“Our focus is on suitability of the premises checking on storage and cleanliness… We are also encouraging the drug shop operators to give full doses but also refer clients where the conditions are out of their capability to handle and also we are looking at prices they charge for commodities.” – KADSOOA member

In addition, KADSOOA members have tried to ensure that particular commodity prices are sold at a uniform price. “We have managed to try and make some commodity prices fair and uniform in most drug shops for example Panadol is being sold a dose at (UGX) 800 compared to 1200 before, and Coartem is being sold at (UGX) 3500 for rural communities and 4000 in towns as opposed to (UGX) 5000 it previously costed.” – KADSOOA chairperson Simon.

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KADSOOA chairperson reported there were still big challenges over the issue of regulating prices of medicine and called for more support for these impacts to be grounded in the district. In Mukono, the DDI reported during the PHP association general meeting held on 15th September 2017 at district offices that during the recent inspection, a medicines outlet was found housing animals at the same time. This was reported in the presence of other district officials and the CAO committed to follow up and have the offender punished. Also during the association executive committee meeting held at district health department, a committee member reported that human medicine is abused and given to animals for example PPF is given to goats. Partnership with the media: Journalists working with KBS FM radio in Kamuli district held weekly talk shows on health rights and responsibilities free of charge. The recordings are available on CD. The one-hour talk shows featured every Sunday, from 11:00am to 12:00pm. Key stakeholders were at different times invited to the show, including members of the RMO association (KADSOOA). KADSOOA members used this platform to inform the community on their medicine-related rights and responsibilities; and to participate in the discussion of RMO issues relating to medicine prices and operational standards (the audio CD for this activity is available). Capacity building of RMOs: District Health Office engaged RHITES EC, one of the partners in Kamuli district, to support the training of the PHPs in cleanliness and storage, record keeping, among others. Through the Assistant DHO, Mr. Moses Lyagoba, the district confirmed that the contacted implementing partner promised support when they start community engagement activities. In Jinja district, Jinja district DDI and doctors from the public sector started training PHP health workers on new treatment approaches. This was in response to the lower score on the indicator of qualified personnel. The DDIs were assigned particular doctors from the district to engage with the PHPs in their respective associations. Areas that were discussed were weight calculation, prescription formulas and how to calculate dosage for different ages. This has been done in Mafubira, Walukuba, Budondo, Butagaya and Bugembe subcounties in Jinja district. The DDI emphasized that this will be done in every subcounty whenever the associations will be having meetings. PHPs have been equipped with knowledge to sell quality medicines and to follow standards as indicated in the NDA guidelines and during the recent monitoring and supervision none of the trained and sensitized PHPs were affected/ found on the wrong side of the law. The PHPs are now aware of who is supposed to monitor and supervise them, and are aware that it is only the DDI and a police officer at the level of a superintendent of police who can arrest them. Previously, before the intervention of the project, fraudsters would pretend to be NDA officials and extort money from PHPs who did not meet standards and even those who met standards but who were ignorant of the regulations. However, now they are aware on who is supposed to arrest offenders. Regular reporting of RMOs to the district: Jinja district developed a reporting tool for PHPs to report to the district on a monthly basis. The district is establishing and initiating a channel through which RMOs, especially drug shop operators, can capture data and report to the district to ensure that their contribution towards health care is captured. The Jinja District Health Officer Dr. Dyogo confirmed that the tool had been drafted and that it would be discussed with the district health team (DHT) and other district stakeholders so that it is approved before it is shared with various RMOs. Improved communication between RMOs and patients: Seven PHPs in Jinja and five in Kamuli installed suggestion boxes and started sensitizing clients on their use. Mpola Mpola drug shop, Danida market lock up 17, Betty drug shop and Erunassor drug shop are among the drug shops that enhanced communication with their clients using this form of feedback mechanism. This was a result of the CSC where the RMOs saw the need for structured communication with their clients on the nature of services offered and how community feels about the prices of commodities.

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3.2 Project challenges  The project period was too short to allow for more visible change. The project lasted only nine months, which made difficult to measure impact. A standard score card is implemented and reviewed after six- month intervals which was not the case during the implementation of the campaign. The impact was measured over a period of four months, two months earlier than the standard period.  The score card process is very intensive and requires a lot of resources. The CSC is a relatively expensive approach to use. However, when the community members understand the approach, they can maintain it and sustain is as tool for assessing performance and developing actions for redress.  Many of the challenges raised/identified during the CSC and input tracking processes were beyond the ability of the community stakeholders to address. For instance, unaffordable medicines, untrained operators, substandard medicines, unscrupulous operators and others are not restricted to the project area; they are broad national problems that call for national solutions, including some that call for building the national capacity to manufacture essential medicines locally.  The total number of community monitors and RMOs trained was limited to 50 per district, each sub county had a total of two RMOs and two community monitors, and the number was inadequate. 3.3 Lessons learnt  Community Score Cards provide a valuable opportunity to identify how services are being experienced by the users and provider and ensure informed decision making especially local government planning.  It also provides a quick report on quality of services to policy makers and implementers and help track if interventions and programs are progressing well.  The CSC process builds shared responsibilities for monitoring the quality of services with users in participatory and empowering mechanisms.  Involving local government leadership in the implementation of community health monitoring initiatives increases ownership and more results. The district leadership expressed interest in institutionalizing the community score card.  Community members become advocates in their own right if empowered with information on patient’s rights and responsibilities.  Community health service monitoring requires good mobilization skills.  Community health service monitoring requires regular monitoring for more results to be achieved especially issues developed by the community in action plans.  Some participants are not in support of actions that hinder their operation for example majority of RMOs sell antibiotics and admit clients among other illegal practices therefore activities like compulsory reporting to the district on services offered and routine monitoring was not welcomed.  Behavior change is a gradual process especially when it comes to community practices and attitudes.

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4. CONCLUSION

In conclusion, the project period was short but it was able to score important achievements, in the areas of revival of RMO associations and their assumption of the role of self-regulation; some marginal reduction in medicine prices; putting the issue of medicines on the community discussion agenda; and improved communication between RMOs and patients. The campaign has initiated a discussion on the medicine charter which will also contribute to improved health care in the private sector especially the small and medium sized outlets. Stakeholders at community, district and national level will build on these successes to sustain change and roll-out to other districts. Pictorial of forums Mukono District

RMOs during the annual general meeting

Jinja District

NDA briefing PHPs in Jinja

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Kamuli District

DDI briefing PHPs in a follow up dialogue

Community sensitisation in Mukono District

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5. ANNEX 1: INPUT TRACKING MATRIX TOOL

INTRODUCTION Good day! My name is ______. Coalition for Health Promotion and Social Development (HEPS-Uganda) is implementing a project funded under the USAID/Uganda Private Health Support Program in Kamuli, Jinja and Mukono districts. This campaign seeks to sensitize consumers and private health providers about medicine policies in Uganda, rights and responsibilities related to medicines and medicine prices. We are undertaking an assessment to determine the baseline situation on the performance of Registered Medicines Outlets.

This information will be the basis of the community/ health workers/ duty bearer interactions intended to improve access to essential medicines in private for profit outlets. You have been selected to participate in this assessment as a community member. The information collected will only be used for the above purposes and will be confidential. This interview will take about 20 minutes. At this point, do you have any questions about this assessment? Do I have your agreement to proceed?

Name (Respondent): ______(Optional)

Name (interviewer): ______

Date: ______(DD/MM/YR)Start time______End Time______

Checked by: ______Date: ______

The ‘respondent’ should be any user of private drug seller services. Are you willing to participate in the survey?

1. Yes If yes continue 2. No If No ,stop here and go to next

Questionnaire No……………..

District …______Sub-county: ______Parish:______Village: ______

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5.1 COMMUNITY EXPERIENCES (Tick correct response: Agree, Disagree, Don’t know)

Number Question Code

1.01 Drug shops I go to are of permanent Agree Disagree Don’t know nature, free of leakages

1.02 Drug shops I go to are clean and Agree Disagree Don’t know orderly and have clear sign

1.03 As a health consumer I only go to a Agree Disagree Don’t know licensed health facility such as

registered medicine outlet to get my medicines

1.04 Private drug outlets encourage to ask Agree Disagree Don’t know questions and get responses

1.05 Private health providers take into Agree Disagree Don’t know account our ability to pay when they decide which medicines to sell

1.06 Medicines costs in private drug Agree Disagree Don’t know outlets in my area are affordable

1.07 Drug sellers usually dispense Agree Disagree Don’t know medicines with bare hands

1.08 Private drug providers clearly provide Agree Disagree Don’t know information on use of medicines

1.09 Medicines envelops are clearly Agree Disagree Don’t know marked with name of medicine, dose

and duration of treatment

1.10 When I get bad reactions with Agree Disagree Don’t know medicines, I report to a health

provider

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5.2 KNOWLEDGE (tick correct response: Agree, Disagree, Don’t know)

Number Question Code

2.01 As a health consumer,I take only Agree Disagree Don’t know medicines prescribed and dispensed

by a qualified health provider

2.02 As a health consumer, I buy Agree Disagree Don’t know medicines from the market

2.03 As a health consumer, when I have Agree Disagree Don’t know a stomach pain; I ask for tablets I

want

2.04 As a health consumer, I always ask Agree Disagree Don’t know the health provider what medicines

he/she has given me, what the medicines are for and how the medicines work in my body

2.05 When I receive a prescription, I am Agree Disagree Don’t know comfortable asking how much the

medicines will cost

2.06 When a drug outlet attendant Agree Disagree Don’t know recommends a medicine, I can be

sure that it is the best value for money

2.07 As a health consumer, I prefer Agree Disagree Don’t know buying the expensive brand

medicines even when a cheap generic is available

2.08 The private drug shop closest to Agree Disagree Don’t know my household usually has all the

medicines my household needs

2.09 As a health consumer, I store all my Agree Disagree Don’t know medicines in the right place/ in a

cupboard out of reach of children

2.10 The quality of services delivered by Agree Disagree Don’t know private health care providers in my

neighborhood is good.

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6. ANNEX 2: NUMBER OF PEOPLE REACHED (ATTACHMENT)

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