THE TBFREE STORY - Aventis Foundation

THE TBFREE STORYCelebrating five years of MAKING a difference© 2010 TBFREE. Produced by Kaelo Brand & Cause Communications - www.kaelobcc.com

A TB free South Africa – a true possibilityWe can look back over the past fi ve years, since TBFREE’sinception, with pride knowing that the programme hastruly made a difference to the lives of thousands SouthAfricans. We have exceeded our expectations, training moreDOTS supporters than we had set out to, and educatingmore people on TB through awareness campaigns thanwe believed possible. But more than that, TBFREE hasgiven thousands of people a new found purpose in life,empowering them with fundamental knowledge and lifeskills through the DOTS (Directly Observed Treatment Short-Course) training. Our DOTS supporters have spread hopeand purpose amongst TB survivors imparting valuableinformation about TB, supporting them through thetreatment phases and empowering their lives. Although webelieve there is still a long way to go in eradicating TB, theprogramme has made a signifi cant impact on South Africancommunities.We know that knowledge is power when fi ghting thisdisease, and this remains central to the TBFREEprogramme. Our primary aim of educating South Africansabout TB has been achieved as we went to great lengthsto ensure our social mobilisation and advocacy campaignsspread the vital message that TB is treatable and curable.TV, radio and billboard advertising, SMS campaigns, roadshows, outdoor hailers, and countless door-to-door visitswere mechanisms we used to spread that message as westopped at nothing to get the message out there.But none of this would have been possible without asignifi cant investment from sanofi -aventis, who investedclose to 15 million euros (R 140 million) through theAventis Foundation facilitating the set up of the TBFREEprogramme. Through our work with the Nelson MandelaFoundation, local communities, non-governmentalorganisations (NGOs) and the Health Department, wehave created a real public private partnership. Our patientcentric approach has meant that we have encouraged TBsurvivors to actively participate in their own recovery butalso empowered them with vital information as they fi ghtagainst the disease.The success of the programme has also rested largely withour staff who have gone beyond the call of duty. They haveselfl essly poured their energy and time driving and ensuringthe success of this programme at all levels and for this weare not only thankful but eternally grateful. We admire eachand every one of you and what you have accomplished overthe past fi ve years.In this book we refl ect on the TBFREE journey and lookclosely at the people behind the project who have beenchanged forever because of TBFREE, from the DOTSsupporter in North West, who once was a TB patient,to the passionate TBFREE centre manager in Limpopowho has dedicated her life to her community, to theDOTS trainer in Mpumalanga who discovered her giftfor teaching through DOTS training. All these stories areillustrated in these pages as we celebrate the successof TBFREE and strive for to a truly TB free South Africa.Thulani NdamaneTBFREE Director - SAHead of Public Affairs - Sanofi AventisForeword from the National Department of HealthAs we continue in our fi ght to combat TB in South Africathrough the National TB Control Programme we require everySouth African to come together in defense of this disease.Nothing can be achieved if we are not making radical effortsto increase knowledge and awareness around TB. We cannotjust talk about how we are going to control the disease, wehave to put our words and strategies into action. To thisend, it has been a pleasure to work with TBFREE who havenot only been extremely proactive in their approach buthave always incorporated our themes and goals into theirobjectives. Thanks to the efforts of TBFREE, we have overthe past fi ve years increased the number of DOTS supportersin South Africa and launched a number of creative TBawareness campaigns across the country.As a nation we are gripped by both HIV/ AIDS and TB,particularly in impoverished communities. It is only witha down-to-business approach as well as continuouscollaboration between government and private sector that ameaningful impact to our health situation can be made.I take this opportunity to thank TBFREE for the work theyhave done over the past fi ve years and for the many livesthey have helped change for the better across South Africa.David MametjaCluster Manager TB Control & ManagementThe National Department of Health2Foreword by The Board of Directors of TB FREEForeword by The National Department of Health3

Introduction to TBFREETB FREE OverviewWorking towards a TBFREE South AfricaThere is no denying that Tuberculosis (TB) remains a majorthreat to public health in South Africa. South Africa is rankedfifth on the list of 22 high-burden TB countries in the world.According to the World Health Organization’s (WHO’s) GlobalTB Report 2009, South Africa had nearly 460,000 new TBcases in 2007, with an estimated 948 cases per 100,000population – a major increase from 338 cases per 100,000population in 1998. TB remains the biggest killer alongsideHIV/ AIDS in this country. Added to this, misinformationabout the disease is rife, with many South Africans believingthat the disease is incurable forgoing testing or simply notcompleting their medication.Making a differenceLaunched in 2004, the Nelson Mandela Aventis Project forCombating TB known as TBFREE set about changing thelandscape of TB in South Africa. By focussing on increasingawareness and training Directly Observed Treatment Short-Course (DOTS) supporters. The programme has scaled upSouth Africa’s war on TB, with the primary role of a DOTSsupporter being to ensure patients take their medicationevery day during the required 6 or more months medicationcourse. The DOTS supporter system is globally recognised asone of the most effective ways of combating TB. Thanks tothe TBFREE programme, in South Africa there is satisfactoryDOTS coverage which means all TB patients have equalaccess to a DOTS supporter should they require one duringtheir treatment phases.As part of the campaign nine TBFREE centres have beenestablished, one in each province in South Africa. Thesecentres provide training to volunteers from the communitieswho wish to become DOTS supporters. The trainers travelacross the provinces to reach rural, remote areas. The DOTSsupporters are also involved in various social mobilizationactivities to ensure that the TB patients are not only assistedin complying with the daily treatment regime but areeducated on the disease and its preventionFormer late Minister of Health Dr.Mantombazana Tshabalala-Msimangand Dr. Robert Sebbag, Vice-PresidentAccess to medicines, sanofi-aventisand Director of TBFREE, signing theagreement between Nelson MandelaAventis Project for Combating TB andthe National Department of Healthon Friday the 19th August 2005 atthe Sizwe TBFREE training centre,Edenvale, Gauteng, South Africa.4 Introduction 5Former Health Minister Barbara Hogan and Sanofi-aventis CEO John Fagan, at a TBFREE road show launch in Thembisa, Gauteng.

© Nelson Mandel Foundation & Matthew Willian“ South Africahas a historyof overcomingthe worst illsimaginable, Eachand every personhas a responsibilityto assist in thecall that we areneeded. We arehappy to havefound a strongpartner in Aventis,working togetherwith us towardseradicating TB inSouth Africa. ”Nelson Mandela, Johannesburg, April 2002How the TBFREE programme worksTBFREE in actionAll nine TBFREE centres in South Africa have a centremanager, administration staff and DOTS trainers. Thecentres are either located within the provincial/districtDepartment of Health offices or within close proximity tothe Department of Health offices. The DOTS trainers areenlisted to not only to conduct DOTS training, but alsoencourage free testing and treatment.Critical to the success of the TBFREE programme has alsobeen the roll out of creative TB awareness campaignswhich educate and increase information about TB usingall forms of media and advertising. The advocacy andsocial awareness campaigns involved key TBFREE staffand DOTS supporters. From door to door visits, to roadshows, to the use of loud hailers and SMS campaigns,TBFREE has innovatively ensured that as many SouthAfricans as possible learn about the disease and how itcan be combated.Advocacy communication andsocial mobilisation initiatives• Door to door and school campaigns• Clinic open days• Mobile billboards and loud hailing• Taxi and bus branding• National TB road shows• TV, radio, print and billboard advertsDid you know?• TBFREE was a five year project fully supported by sanofi-aventis• The Nelson Mandela Foundation partnered with sanofi-aventisand the Department of Health to form TBFREE• DOTS is an internationally recognised strategy for TB control• Besides encouraging people to be screened for TB, DOTSsupporters provide advice and support to TB patients.Tuberculosis: A deadly threat• Someone in the world is newly infectedwith TB every second• Overall, one-third of the world‘s populationis currently infected with TB• Globally, nearly two million people diefrom TB every year.“ KNOWLEDGEIS POWER ”- Sir Francis Bacon• A Please Call Me campaign – every personwho sent or received a please call me textreceived an awareness message about TB onthe SMS.6IntroductionHow the TBFREE programme works7

Left to Right: Doug Howie (Programme Manager), Mpho Letsholo (Bookkeeper), Ethel Magidela (Offi ce Administrator),Grant Pettitt (CFO sanofi aventis), Tumi Ramasodi (HR manager), Leko Nkabinde (ACSM manager), Pennill Schnugh (Accountant)The objectives of TBFREEThe TBFREE visionTBFREE’s vision is that of a South Africa free of tuberculosis. In line with the Department of Heath’s objectives and theNational Tuberculosis Control Programme, TBFREE’s main objectives were to ensure that people diagnosed with TB had adedicated and trained treatment supporter as well as access to information about the disease. The programme set out toensure that survivors comply with treatment requirements and complete the treatment course successfully.The TBFREE goals• To train 22 400 DOTS supportersInformation • Treatment • Support • Compliance• To increase the treatment success rate by at least 10percentage – from 65% to 75% – and ultimately to85%• To increase the ratio of treatment supporter to TBpatient from 1:20 to 1:10.• To improve patient monitoring by establishing anappropriate infrastructure for effective reporting,thereby reducing the number of defaulters andpatients unaccounted for.• To standardise training material for DOTS supportersin conjunction with WHO, the Department of Health,medical professionals and academics.Knowledge is powerAbove and beyond the DOTS training programme,TBFREE set out to improve advocacy, communicationand social mobilisation about TB. The DOTS supporterswere encouraged to be involved in the social mobilisationcampaigns which aimed to:• Increase case fi ndings and early detection• Improve cure rate by educating communities on theimportance of treatment adherence• Reduce defaulter rate by stressing the importance oftreatment completion and DOTS support• Involve communities and encourage participationin TB and infection control through communityawareness, events and activities.Aligned to national andglobal war on TBTBFREE’s objectives were in line with the SouthAfrican National Tuberculosis Control Programmeand World Health Organisation, targets which aim to:• Attain a 70% case detection rate• Reach a 85% cure rate• Achieve a less than 5% treatment interruption/defaulter rateTBFREE’s key achievementsWinning the fight against TBTBFREE has exceeded its initial targets. To date thereare 40,000 DOTS supporters located across the countryinspiring, educating and supporting TB survivors in theirfi ght against the disease. The passionate commitmentof centre managers, DOTS trainers and the thousandsof DOTS supporters has revealed the dedicationSouth Africans have to take responsibility and make adifference to the lives of their fellow citizens.Kimberley, Northern CapeCape Town, Western CapeEdenvale, GautengKlerksdorp, North WestTBFREE’s nationwide reachAmathole, Eastern CapeGiyani, LimpopoWitbank, MpumalangaBloemfontein, Free StatePietermaritzburg, KwaZulu NatalNelson Mandela Bay, Eastern CapeHIGHlIGHTS• More than 40,000 DOTS supporters havebeen trained across the country• The campaign has reached millions ofpeople in the fi ve years it has been running• Over 2.5 million people have been reachedthrough door to door and school educationalcampaigns• The programme has hosted more than 100clinic open days• A national TBFREE Road Show reachednearly 30,000 people• 1.1 million people daily were reachedthrough the Please Call Me Campaign withSouth Africa’s largest mobile operator.8The objectives of TBFREEOur overall impact9

TBFREE’s key achievementsMilestonesJune 2010 – TBFREE presents a paper on the role that Advocacy Communication and SocialMobilisation has in curbing the spread of TB at South Africa’s 2nd TB conference in DurbanDecember 2009 – TBFREE presents at the International Lung HealthConference in Cancun, MexicoOctober 2008 – Minister of Health launches the TBFREE road showin Thembisa GautengSeptember 2007 – National Impact Assessment study reveals that radio is themost popular medium to reach the most people with TB messagesMarch 2007 – New centre opens in Western Cape2006 – New centres open in Mpumalanga, Limpopo, Eastern Cape and Free StateMarch 2006 – Partnership with Taxi Association increases campaign’s visibilitySeptember 2005 – TBFREE embarks on week-long advocacy and social mobilisationcampaigns in three provinces - North West, KwaZulu-Natal and the Northern CapeSeptember 2005 – Local businesses join in the fight against TBAugust 2005 – Signing of first formal private public partnership agreement formanagement of TB by the National Minister of Health and TBFREE directorsApril 2005 – Moving mobile message boards are launched in 11 official languagesMarch 2005 – Official opening of TBFREE Sizwe Centre in Gauteng by theinternational CEO of sanofi aventis and Gauteng’s Health MECNovember 2004 – Fourth TBFREE centre is opened in Kimberley, Northern CapeOctober 2004 – First three TBFREE Centres are opened in Edenvale, Gauteng,Pietermaritzburg, Kwa-Zulu Natal and in Kerksdorp, North West.April 2002 – Nelson Mandela launches the TBFREE project“ Do your little bit of goodwhere you are; it’s thoselittle bits of good put togetherthat overwhelm the world. ”- Bishop Desmond Tutu10Our overall impact11

Training programmeTraining DOTS supportersAs most of the TBFREE trained DOTS supporters willtestify, nothing beats seeing a TB patient they have caredfor, finally being discharged, fully cured. Being a DOTSsupporter is a rewarding job, but that’s not to say it’s easy.It takes a special person that selflessly gives up their owntime to be trained as a DOTS supporter, and to help TBpatients everyday, for little or no monetary gain.DOTS (Directly Observed Treatment Short Course) isthe internationally recognised strategy for supportingpatients during the six to eight months duration of theirtreatment. A DOTS supporter’s key role is to ensure thata patient swallows his/her medication daily. The rolealso extends to providing emotional support, as well assharing knowledge and information about the disease.How it works:• A recruitment drive is launched where potential DOTSsupporters are selected from a group of volunteerswho already belong to a NGO (non governmentalorganisation)Advocacy communication and socialmobilisation programme• The candidates that are trained also includetraditional healers, members of the South AfricanPolice Services and inmates in various correctionalcentres around the country• The training process is very hands-on and conductedby TBFREE’s trainers• The DOTS training manual is accredited by the Healthand Welfare Sector Education and Training Authorityallowing those trained by TBFREE the opportunityto advance their skills through the South Africangovernment’s extended public works programmes.• The training programme takes three to four days afterwhich the learners undergo formative and summativeassessments• TBREE trainers continue to stay involved and makemonthly visits to clinics to check how the patients ofthe DOTS supporters are progressing“ Taking care ofothers, is reallytaking careof self ”Petrus Mahlangu, TBFREE trainedDOTS Supporter in MpumalangaRaising awarenessFor thousands of South Africans the simple messagethat TB can be cured is unknown. With this lack ofunderstanding about the disease, TBFREE took it uponthemselves to ensure that the message that TB is not adeath sentence was spread all across South Africa.A clear visionKey objectives of the advocacy and social mobilisationprogramme:• Educate communities and increase awareness of TB• Increase case finding and early detection• Influence behavior change• Strengthen partnerships between TBFREE, theDepartment of Health and other stakeholders“ When I heard I hadTB I was confused Ididn’t know about thedisease. I thoughtI was dying. ”All of TBFREE’s advocacy and social mobilisation activitieswere conducted in conjunction with the South AfricanNational and Provincial Health Departments and endorsedeach year’s TB theme as decided upon by the NationalHealth Department. For 2010 the TB theme was, “On themove to kick TB out” which aptly tied in with the 2010 FIFAWorld Cup celebrations and preparations in South Africa.Lucricia Masamsubuka, a TB survivor12Training Programme Advocacy communication and social mobilisation programme 13

How it works• A three to five day TBFREE campaign was launched togetherwith the Department of Health and local NGOs in areaswhere there was a high prevalence of the disease.• Along with door-to-door visits, community members weregiven promotional material like shopping bags, umbrellas,t-shirts and collapsible cups carrying TB messages.• All of the activities were also supported with mobilebillboards and loud hailing devices to reach as many peopleas possible.‘Above the line’ TBFREE activities included:• A TV commercial flighted in 2007 and 2008• Radio adverts in 11 official languages• 56 static billboards mounted at strategic points around thecountry’s freeways and busy roads• Taxi branding and taxi rank activations.A highly effective road showA national three month long TB awareness road show wasconducted in 2008. The road show went out to 56 sites acrossthe country where TB education was conducted throughindustrial theatre using nine of the eleven official languagesto ensure maximum understanding. From this road show over4 000 people were tested for TB and HIV, 747 people werediagnosed to be HIV positive and referred to their nearest clinicsfor further consultation and treatment.“ The battle against TBcannot be won until allour citizens understandthat it can be cured. ”“ Education isthe most powerfulweapon which youcan use to changethe world. ”Nelson Mandela100%Monitoring and evaluationThere’s no denying that the success of any project dependson keeping a close check on progress, with this in mind,evaluation was an integral part of TBFREE. With the supportof the TB management district and clinic and DOTS supportersin 2007 TBFREE selected a maximum of six clinics in eachprovince where TBFREE personnel could continuously collectdata from trained TBFREE DOTS supporters and assess theimpact the DOTS supporters were making to the National TBControl Programme. The data was then collated into a reportwhich was sent to the TBFREE Head office on a monthly basisand used to produce a progress report on a quarterly basis.Reporting back from DOTS supporters on the progress of theirpatients was also an integral part of a DOTS supporters’ role.TBFREE DOTS trainers were also responsible for following theprogress of the DOTS supporters they had trained.75%50%25%0%Monitoring and evalution programme1.713.67.614.432.230.5EasternCape2.25.61.89.820.859.8Limpopo1.719.31.713.721.542.1NorthernCape4.86.511.317.759.7Gauteng4.31.17.642.444.6KwaZuluNatal4.92.54.910.511.166.1WesternCape1.57.13.415.823.748.5Free StateAnnual project meetings were held at the beginning of eachyear where all of TBFREE’s personnel met to present anddiscuss their operational plans and budgets for the coming year,which were also planned collaboratively with the Provincial andDistrict Health Departments. Quarterly managers’ meetingswhere the centre managers from all the provinces convenedto share insight and give an updated report on each of theiractivities vs. budget and operational plans, were also held.0.25.97.112.522.352.0NorthWest3.39.14.117.716.049.8Mpumalanga5.38.89.311.29.056.4Consolidatedsub-districtsComparison of TBFREE reached clinics with consolidated provincial sub-districtsKeyTreatment FailureDefaultedTransferredDiedCompletedCured14Advocacy communication and social mobilisation programmeMonitoring and evalution programme15

Eastern CapeFocus on TBFREE Programme in each provinceStats and FactsTB Free centre location:TB cure rate (2008): 60.9%The project is based in the Nelson Mandela BayMetro with three sub districts and focuses on supporting oneclinic in each sub-district. As well as in East London, Amathole District.Trained DOTS supporters:3133 for both Amathole andNelson Mandela Bay Metro.“ It has taught me tounderstand people’sdifferences and tounderstand that we mustHave a joint view when itcomes to dealing withTB. It has been tough,but worth it! ”Andile Fihlani, DOTS trainer, Amathole16 Section B - Focus on TBFREE Programme in each provinceEASTERN cape17

Key success factors• Immense support from the National TBFREE Office and the Department of Health inthe metro and Amathole.• Training programme at the Correctional Service Centre – contributed towards therehabilitation of inmates whilst alleviated misconceptions that inmates may haveabout the disease. Two former inmates have been released and are working as DOTSSupporters.• Recognition and awards ceremonies for DOTS supporters worked well.• The TBFREE programme is well established in the province.• DOTS supporters went out of their way to providing the community with assistanceduring winter, visited over weekends and assisted in growing vegetable gardens.18 EASTERN cape - Focus on TBFREE Programme in each provinceEASTERN cape19

Some people are born to teach.Lulu Zondani, TBFREE DOTS trainer, Port ElizabethLulu Zondani is someone who knew from an early age thatshe had a passion for empowering people with information.Starting out as a Sunday School teacher, Lulu soonprogressed on to becoming a life skills trainer for secondaryschool teachers, this lead to an involvement in health care,and eventually to her arriving at the Nelson Mandela BayMetro TBFREE centre as a qualified DOTS trainer.Lulu explains, “I have a passion for adult training. It givesme great pleasure to work with people. I have always beena strong believer in the worthiness and greatness of humanwisdom. I see being a trainer as an opportunity for growth,for both me and the participants.”Having worked in the arena for many years, Lulu claimsthat the TBFREE project has been immensely successful.She cites the TBFREE Advocacy Communication andSocial Mobilisation activities as a very powerful tool, andin particular, the door-to-door campaigns that allow DOTSsupporters to be have face-to-face communication withintheir local communities. She describes training as a twowaylearning experience, adding, “I learn a great deal fromother people’s experiences.”Lulu says that working with local inmates on TB educationwas a life changing experience and despite having trainedwell over 1500 DOTS supporters, she remains passionateand dedicated to the programme. “It is gratifying todo something that you love. I believe that we are on amission and this mission is bigger than all of us. The littlecontribution that I am making in my corner is changingsomeone’s attitude towards the disease,” she continues.Lulu understands that in order to be a successful teacher, itis essential not only to train, but also to be there for DOTSsupporters. “DOTS supporters sometimes need you as ashoulder to cry on. I try to never underestimate what theother person is feeling or thinking.”“ I also have a renewed respect for the workthat everyone puts into providing healthservices to the community, especiallythe work that the DOTS supporters are doingas they do not get paid for it ”Kholiswa Mkrakra, TBFREE office administrator, Eastern Cape, Port Elizabeth.20 Eastern Cape21

Free StateStats and FactsTB FREE centre location: BloemfonteinTB cure rate (2008) 70.9%Trained DOTS Supporters: 2716“ I have been tooill to attend publicawareness eventsbut have heard alot of messagesabout TBFREEon the radio ”TB patient, Bophelong clinicKey success factors• Excellent DOTS trainers who have remainedcommitted to the programme.• Good relationship with local clinics.• Strong relationships between DOTS supportersand TB patients – trust and dependence hasdeveloped.• Awareness campaigns focusing on peopleliving on farms has been very successful.“ Being a DOTSsupporter is not easy,it requires passionand commitment. Butit’s all worth it whenyou see people gettingbetter and startingto trust you ”DOTS supporter, MUCCP clinic, Bloemfontein22Free StateFree State23

Leading by exampleTshepo Matsie, DOTS trainerIt was fortuitous Sunday morning when Tshepo Matsiespotted an advert for a TB DOTS trainer in his localnewspaper. At first he pushed aside his inkling to apply forthe position, believing that it was unlikely that he would everwalk away with the job. But eventually, Tshepo, never oneto let negative thinking get in the way, threw caution to thewind, and applied for the job. And as they saying goes, therest is history.Today Tshepo is motivating, inspiring and teaching DOTSsupporters across the Fezile Dabi and Motheo Districts inthe Free State. And it’s abundantly clear that he’s not onlyexcellent at what he does, but loves it too. “I’m passionateabout getting out there, meeting new people and going todifferent places to do training,” says Tshepo, who cites themost important part of the training programme as teachingDOTS supporters about the prevention of TB.Tshepo has been more than proud to be associated with theTBFREE programme and says that he knows the TBFREEmessage has spread across the province, personallynoticing a change in locals’ perceptions and knowledge ofthe disease. “Without a doubt what stands out in my ownmind as our greatest moment, was the TBFREE socialawareness farm-based campaign. We went and visitedpeople living on farms and spread factual messages aboutTB and HIV – people living on farms are so often left behindbecause they do not have easy access to information,” saysTshepo.Being a DOTS trainer has certainly changed Tshepo’s lifeas he explains that he has become, “more conscious of myrole as someone DOTS supporters are looking up to as anexample. I take extra care to act with responsibility at alltimes – no matter what I’m doing.” But it’s not this attributethat has won him the respect of the thousands of DOTSsupporters he’s trained, it’s clearly his unique ability toconnect with people that inspired many a volunteer to morethat fulfil their role as a DOTS supporter.“ I have always been very community focused.I have good listening skills and have been ableto connect with people – that’s what makesme the best trainer I can be ”Thulo Lebakeng, TBFREE DOTS trainer, Free State“ We are honoured as aprovince to work witha partner like tbfree,a partner that camewith the most valuableresources, financialand human; to help inthe fight against tb. ”Yolisa Tsibolane,Former provincial TB senior manager, Free State24 Free State25

GautengStats and FactsTB FREE centre location: Sizwe House, Modderfontein, EdenvaleTB cure rate (2008): 78.7%Trained DOTS Supporters: over 7,300OTHER FACTS:A large number of the trained DOTSsupporters have improved their skillsand are now working as staff nursesand pharmacists’ assistants becauseof government’s Extended Public WorksProgramme (EPWP)“ I started out as a DOTS supporter and am now theTBFREE centre manager. Although it’s a challengingjob it is a dream come true ”Tshifhiwa Tshifhango, TBFREE Centre Manager, Gauteng ProvinceKey Success Factors• Excellent partnership with Provincial Department of Health.• Regular meetings with DOTS supporters were hosted tounderstand the challenges and seek solutions.• Great improvement in compliance to medication due to theholistic approach to dealing with TB and HIV collaboratively.• DOTS supporters’ home visits have been extremelysuccessful. Patients feel that the stigma is lessenedbecause the DOTS supporters are willing to visit them intheir own homes.• The advocacy communication and social awarenesscampaigns have been extremely effective.“ With team work youalways come out as awinner ”Zoliswa Chingwaru,TBFREE DOTS trainer, Gauteng.“ I started workingfor TBFREE in 2005as a caretaker andthrough being atthe centre learnta lot about TB. I amconfident now thatI can give healtheducation on TBto anyone. ”Joseph Molope,TBFREE caretaker, Gauteng.26GAUTENGGAUTENG27

From sickness to successThabo Mwale, TBFREE Ambassador, Gauteng.Thabo Mwale loved the feeling of the ground poundingbeneath his feet as he ran when he played soccer - takinga kick at a ball and having it fly through the air into thegoalposts, score!Then, when he was seventeen, he found that he just didn’thave the energy for the sport he loved so much. He losthis appetite, started losing weight and couldn’t kick apersistent, phlegmy cough. But only four months later hewent to his local clinic for a check-up.Thabo was told he had contracted tuberculosis and wasgiven medication. He started treatment but stopped takinghis pills when he started to feel better, even suspecting hehad been misdiagnosed. “In the rural areas, we believethat TB is for people who are dirty, who don’t like to washthemselves,” he explains. “I wasn’t like that, so I didn’tbelieve that I could have the disease.” Defaulting ontreatment had serious implications for Thabo and whenhe was eighteen, his symptoms returned. By this time, theinfection was so advanced that he had to be admitted tohospital and he slowly began to accept the truth.At the age of 19, after eight long months of treatment andbed rest, Thabo was cured and released from hospital.Although he emerged victorious from his battle with thedisease, the scars will be with him for the rest of his life.Thabo soon made it his life’s mission to increaseeducation about TB in his community. He was enlistedby TBFREE and was given healthcare training to becomea DOTS supporter. With his passion for spreading truthabout TB, he went on to establish the Thabo MwaleFoundation in the City of Tshwane. With the assistance of32 volunteers, Thabo carries out door-to-door and streetbasededucation in local communities.“TBFREE are the people who made merealise my dream of helping people”says Thabo. “They trained me to work with TB patientsand to train my foundation members, so that we knowhow to express things about the disease so that peopleunderstand and we can help them.”“ To receive a call fromthat same employer two tosix months later giving mefeedback on the improvedhealth of their employees, isjust unforgettable ”Kelebogile LentselaOffice Administrator, Gauteng.28 GAUTENGGAUTENG - Focus on TBFREE Programme in each province 29

KwaZulu-NatalStats and FactsTB FREE centre location: PietermaritzburgTB cure rate (2008): 62.9%Trained DOTS Supporters: 9,140“ I became awareof TB because therewas a TB relateddeath in the family. Iwould certainly be anadvocate for TB testingand treatment becausenow I know TB deathscan be avoided. ”TB patient, Mafakathini clinic.Key success factors• Good relationships between the province and thedistricts. TBFREE meets with the district everysecond month and there are also annual progressmeetings.• Strong personnel – very low turnover rate of staff.• Patients built very strong relationships with theDOTS supporters.• Very strong communication channels betweenTBFREE and Department of Health.“ We have frequentmonthly meetings withTBFREE and areally good workingrelationshiphas been cultivated. ”TB nurse, Nkwalini clinic30 kwazulu-natalkwazulu-natal31

“ I think what makes TBFREEwork is that the trainingreally equips the DOTSsupporters with how to dealwith TB patients. But more thanthat the trainers continue tosupport the DOTS, theprogramme has continuity ”A mother’s touchSister Ntsele, TBFREE Centre ManagerIt was not by chance that just months after leaving her jobas a nurse, the TBFEE programme was launched in KwaZulu-Natal and the opportunity for Sister Ntsele to fulfil herpassion for helping people fight TB was realised.“I have been here from the beginning, I joined just twomonths after TBFREE launched in October 2004. So you cansay that TBFREE is my child, I have watched it develop andgrow,” explains Sister.Like any proud mother, Sister beams when she mentions theachievements of TBFREE in KwaZulu-Natal over the past fiveyears. Firstly Sister notes the improved TB cure rate in theeThekwini sub-district, due to TBFREE’s creative interventionsthat range from school visits, to taxi rank promotionsand door-to-door campaigns. Sister’s personal favouriteprogramme, is the campaign TBFREE runs in prisons. “Mostof the prisoners are so hungry for knowledge, and you cantell that whatever information we pass on to them, they try toapply in their lives and teach to others, even though they areincarcerated. That really inspires me,” says Sister.The increased cure rate in KwaZulu-Natal has exceededSister’s expectations. But she will not take all the creditand explains that, “the tireless work of my dedicated teamof DOTS supporters and trainers scattered throughout theprovince are the people who are making a real difference tothe lives of sufferers.” Sister’s job is not without its trials andshe sites that retaining DOTS supporters is a real challenge.But always looking on the bright side, Sister explains that,“we have trained thousands of DOTS supporters over theyears and we know that even if they may not be part of theprogramme presently, they can still transfer the knowledge.So we really have eyes and ears everywhere, which is whatthe heart of the programme is really about.”Sister’s nurturing nature and passion to build a sustainableTB programme in KwaZulu Natal has contributed to theoverall success of the TBFREE project.Bongani Malevu,TBFREE, administration officer, KwaZulu-Natal.32 kwazulu-natal - Focus on TBFREE Programme in each provincekwazulu-natal33

LimpopoStats and FactsTB FREE centre location: Giyani Community Health Centre, GiyaniTB cure rate (2008): 66.7%Trained DOTS Supporters: Over 3,800Key success factors• DOTS trainers invested time into building relationships with indunas (a spokesperson between the localchief and people) to get information about TB out to the community. There is collaboration between TBFREEprofessionals and local traditional healers.• Testing rate for HIV has increased.• DOTS supporters are now welcomed into homes.• Community members have gone directly to TBFREE to be trained as DOTS supporters.• In a recent social mobilisation campaign, 1583 families and 3077 people were reached and 40 TB suspectswere referred to a clinic for testing and possible treatment.OTHER FACTS:Locals tend to visit traditional healersfor consultation before a clinic andare often under the impression thatTB is an untreatable disease.“ We have not onlytrained a greatteam ofsupporters buthave made greatfriends in theprocess. ”Jane Mathe,TBFREE DOTS trainer in Limpopo34LimpopoLimpopo35

“ I have been a DOTSsupporter to more than180 patients since 1998.I do home visits nearlyeveryday. There is nothingbetter than seeing oneof the patients you havehelped being discharged,fully recovered. ”Tintswalo Irene Ntuli,TBFREE DOTS supporter, Limpopo.Investing in communityJapisa Mathonsi, TBFREE centre manager“For me the most rewarding thing about my job is seeingcommunity members who are imparting knowledge onothers and showing responsibility for sharing what theyknow. For example, we often get referrals from people whohave heard their neighbours coughing. We can then sendout a DOTS supporter to intervene and do a home-visit. Ithas become very much a community based project whereall DOTS supporters do their bit to help.Meet Japisa Mathonsi, the local TBFREE centre managerwho is all about empowering her community. Japisa’spassion’s for community stems from her background innursing. She was working for the Department of Healthbut then the opportunity for her to be involved on a groundlevel project came knocking in 2006. “I always wantedto be more in touch with the community and TBFREE’shands-on approach was just what I’d been looking for,”explains Japisa.Since 2006 Japisa has been dedicated to TBFREE andhas imparted her expertise on training and managementto her trainers and DOTS supporters. I have also seenhow we can collaborate with the traditional healers, manyof the healers now have a better understanding of thesymptoms of TB and understand that these symptoms arebest treated by a clinic.She truly thrives off seeing community members withthe right knowledge about TB and testifies that she haspersonally seen a marked difference in her community’sunderstanding of TB. Her continuous involvement withthe community through TBFREE has inspired Japisa tocomplete her Masters in Community Nurse Sciencesthrough the University of Pretoria.“ Living alone at home, the DOTS supportersare much needed support for me. I have beenon treatment sine November 2009 and amprogressing well and living positively. ”TB patient, Basani Clinic.36LIMPOPO37

MpumalangaStats and FactsTB FREE centre location:TB cure rate (2008): 64.5%Trained DOTS Supporters: 3,647Witbank, Nkangaka District“ Over the last four years in Mpumalanga wehave created a great deal of awarenessabout TB through social mobilisationcampaigns, these included school visitand home-based visits. I think that more peopleunderstand the illness now ”Mathithi Moloi, Centre Manager, MpumalangaKey success factors• Facilities’ treatment outcome indicators have significantly improved with TBFREE’s intervention.• TBFREE collaborated with local clinics and assisted wherever they could – the relationshipbetween the local Department of Health and TBFREE has been excellent.• The training has boosted DOTS supporters’ confidence levels and they are now able to assistcommunities that approach them for life skills information.• Successful door-to-door campaigns were run, in a recent campaign, 229 household and 607people were reached.• Strong bonds have been formed between DOTS supporters and patients. Not only have patientsbeen supported but the DOTS supporters have really derived satisfaction from seeing peoplebeing cured.“ i have been very humbledto see that the DoTS trainingwe’ve offered has left somany faces beaming. ”Nthoana Mbethe,DOTS trainer, Mpumalanga38MpumalangaMpumalanga39

Putting others firstPetrus Mahlangu, DOTS SupporterPetrus Mahlangu is a DOTS supporter in MatshidingMpumalanga; he’s seen first hand the difference inhis own life helping others makes. Petrus’s journey tobecoming a DOTS supporter stemmed from a life longinterest in health care, for a time Petrus ran his own NGOthat helped look after people living with HIV and AIDS.But soon Petrus recognised the strong link between HIV/AIDS and TB and saw the thousands of people sufferingfrom both diseases.Petrus also saw that people in his community could notseparate the two and understand that TB is a curabledisease. With this as his inspiration, Petrus quickly got towork on educating himself and attended a three day DOTStraining programme where he learnt the fundamentalsof the disease. But more than that, Petrus learnt theimportance of forming an emotional connection withpatients and how to be a strong support system forsomeone living with HIV.Since then, Petrus has been a DOTS supporter and over theyears he has helped a number of people in his communityfight the illness. “I have learnt that sometimes you need togo the extra mile to give further support to TB sufferers,”explains Petrus. “I’m always available to talk and over timeI’ve also become even more compassionate,” continuesPetrus.“Taking care of others, is really taking care of self,”- Petrus Mahlangu, DOTS Supporter.At the time of speaking to Petrus he was at one of his TBpatient’s bedside – its clear that Petrus’s commitmentgoes way beyond the duties of a DOTS supporter. “Takingcare of others, is really taking care of self,” ends Petrus.“ When we have done door-to-door campaigns wediscovered that many people did not have a clueabout TB and we were able to change that. ”Morabane Malesoena, Office Administrator, Mpumalanga40 Mpumalanga41

Northern CapeStats and FactsTB FREE centre location:KimberleyTB cure rate (2008): 65.6%Trained DOTS Supporters: 4,090“ The most fulfillingthing was witnessingthe eagerness andcommitment of DOTSsupporters. Their pridein what theywere doing was alsovery rewarding. ”Elsie Lekwene, TBFREE DOTS trainerKey success factors• Strong partnership with government departments and local non-governmentalorganisations (NGOs)• Well established school awareness campaign through partnership with otherstakeholders• Recognition and awards ceremonies for DOTS supporters• Only Health and Welfare Sector Education and Training Authority accredited and TBfocussed NGO working in the area• Dedicated and passionate centre manager“ The TBFREE projecthas ensured that morepeople visit the clinicsregularly becausepeople are more alertand aware of thesymptoms of TB ”Jim Volgraff,TBFREE Centre Manager, Northern Cape42Northern capeNorthern cape43

Survivor and supporterJethrou ValteinJethrou Valtein knows what it takes to beat TB and be a DOTSsupporter. In 2004 Jethrou contracted TB while working as aDOTS supporter in the Roodepan community, outside Kimberley.Jethrou is matter of fact when explaining how she found outshe had TB. “I started getting night sweats and could not stopcoughing so I visited the Dr Torres Clinic immediately and thetests revealed I had contracted TB. I didn’t blame anyone and Ijust concentrated on getting better and getting stronger.”With two young daughters Jethrou put all her strength intobeating TB by completing the medication, eating healthily andvisiting her local clinic for regular check-ups. With a determinedoutlook Jethrou continued working as a DOTS supporter aftera month of having started her own treatment. “I know what itis like to have TB and I can reach into people’s hearts and getthem to understand how important it is to eat well and taketheir pills every single day.” It took Jethrou just six monthsbefore she was given the all clear.Jethrou became a DOTS supporter after joining Phuthaditjhaba,an NGO that provides community outreach services tochronically ill people and the elderly. “I want to be a facilitatorone day just like Jim Volgraff. The people who work in thisorganisation are good people and I want to follow in theirfootsteps. I am not ashamed that I have had TB and I am notafraid to talk about and share my experience with the community.”“ My most memorable moment was when thehealth MEC in Northern Cape conducted a TBblitz and gave food parcels to the communities.It was good to see a high profile figure takingthe time out to give to the needy. ”Quentin Valtein, TBFREE office administrator, Northern Cape.44 Northern cape45

North WestStats and FactsTB FREE centre location: KlerksdorpTB cure rate (2008): 58.3%Trained DOTS Supporters: Over 5,000OTHER FACTS:The North West has a high infection rate dueto the mines where HIV/AIDS is prevalent.“ With perseverance,we have managedto make a greatcontribution to thequality of life ofpeople in ourcommunities. ”Key success factors• Strong partnership with Department ofHealth at a district and provincial level• Door to door campaigns have proved highlysuccessful• Strong links with local schools and schoolnurses• Enthusiastic, committed team of DOTSsupporters• Excellent centre managementMohapi Kutoane, DOTS trainer, North West.46 North westNorth west47

“ I have taught andbeen taught so much, ican’t even begin toput it into words. ”Thandeka Nhaba,TBFREE Office Administrator, North West.Community change makerShirley Nhlapo, TBREE Centre Manager“I couldn’t believe it when I first saw Pieter, he was so sick. Theonly reason he just walked into the centre for help was afterseeing the TBFREE sign on the street corner.”Meet Shirley Nhlapo, the TBFREE Centre Manager for the NorthWest who has made it her life’s mission to make a differenceto her local community. When Pieter came through the doorsof the centre she responded immediately by ensuring that hewas examined by the best TB doctor in the area immediately.“I watched to make sure he took his medicine daily and prettysoon he become stronger. He works at the garage around thecorner and when I see him now he always says that I saved hislife,” beams Shirley.Shirley began her working career at the Tshepong Hospital inKlerksdorp before joining TBFREE. It was during her time at thehospital that she forged strong relationships with other healthworkers which were to stand her in good stead for her workwith TBFREE. As centre manager she is in charge of managingsocial mobilisation campaigns, facilitating the training ofDOTS supporters, co-ordinating local NGOs and making surethat as many TB patients as possible receive treatment andinformation on the disease.“I love my job as I can make a difference to people’s lives justby giving them information. If they are aware of the diseaseand symptoms, and have access to clinics then their chancesof beating the disease are very good. This is what makes myjob great,” says Shirley.“ Coming from a backgroundin professional nursingin the public sector, I havedeveloped a great dealprofessionally and now havea better understanding ofhow the community worksbecause I have been involvedon the ground, as opposedto being in a hospital. ”48North westJonathan Motsamai,TBFREE DOTS trainer, North West.kwazulu-natal - Focus on TBFREE Programme in each province49

Western CapeStats and FactsTB FREE centre location: Cape TownTB cure rate (2008): 79.4%Trained DOTS Supporters: 2641“ TBFREE has beenvery visible duringcampaigns andtraining. They activelysupport the TBprogramme ”Sub-district coordinator, WitzenbergKey success factors• Stakeholder and partnership driven intervention• Working closely with the Community Based Forum, a major NGO for home based carers in theregion. Their carers are trained through TBFREE and the forum gives TBFREE insight into issuesand red tape present in some communities.• Both elements of the TBFREE campaign were successful – DOTS training and advocacycommunication and social mobilisation campaigns.• Notable difference in the community’s attitude towards TB.• Strong relationship with provincial Department of Health TB and HIV units- TBFREE is part of theplanning process with the units.“ Door-to-doorcampaigns withTBFREE have playeda crucial role indriving TBawareness andhome screeningalso facilitatingvoluntarychecks whensymptoms arise ”Winnie Mgudlwa,TBFREE Centre Manager, Western Cape50 Western CapeWestern Cape51

“ TBFREE is workingtowards a good cause andI’ve enjoyed being a partof it. I’ve been involvedwith the different aspectsof the project fromassisting trainers tocoordinating events ”Kholekile Zondani, office administrator, Western CapePutting others firstFrancis Jacobs, TBFREE DOTS Trainer, Western CapeHelping others is a big part of who Francis Jacobs is. Shehad always been involved in healthcare, but when theopportunity arose for a job with TBFREE that would allowher to help enrich others with her knowledge, she jumpedat the opportunity.Above and beyond coordinating training, Francis hasa passion for advocacy communication and socialmobilsation campaigns. She has been involved with anumber of successful campaigns across the Western Capeand in conjunction with home based care NGO’s, clinicsand sub district coordinators.Getting back to chatting about DOTS supporting, Francisloves nothing more than to see a cured patient. “Themost magical moment for me and what keeps me doingwhat I do, is when you see the outcome of the work youhave put in. It’s such an empowering process to see theDOTS supporters you have mentored working hard in thecommunity. Seeing someone who was once bed-riddenwho is now full of life, makes it all worth it,”Francis firmly believes that the success of the TBFREEproject lies in its visibility in communities, “people see theproject through posters, they listen to it through our DOTSsupporters and they see us on the ground going from doorto-door.The TBFREE project has been tangible and real forour local community. It has really lived and that has madeall the difference,” concludes Francis.52 Western Cape - Focus on TBFREE Programme in each province Western Cape 53

The faces behind the TBFREE programmeLeft to Right: Eugene Muller (Director Germany), Naomi Ngobeni, Munyadziwa Rabambi, MonicaMachavana, Thulani Ndamane (Director SA), Japisa Mathonsi, Doug Howie (Programme Manager)54

Tshidi MofokengDOTS trainer, GautengLulu ZondaniDOTS trainer, PEKholiswa MkrakraOffice Administrator, PEMorabane MalesoenaOffice Administrator,MpumalangaThulani NdamaneTBFREE Director, SA and Headof Public Affairs , sanofi aventisGrant PettittCFO, Sanofi AventisFrancis JacobsDOTS Trainer, Western CapeMathithi MoloiCentre Manager, MpumalangaNthoana MbetheDOTS trainer, MpumalangaAndile FihlaniDOTS trainer, AmatholeDoug HowieProgramme Manager, TBFREELeko NkabindeACSM Manager, TBFREEPennill SchnughAccountant, TBFREEDudu BophelaDOTS trainer, KZNElsie LekweneDOTS trainer, Northern CapeQuentin ValteinOffice Administrator,Northern CapeBongani MalevuOffice Administrator,KwaZulu NatalTumi RamasodiHR Manager, TBFREEMpho LetsholoBookkeeper, TBFREEEthel MagidelaOffice Administrator, TBFREESister NtseleCentre Manager, KwaZulu NatalGugu NzimandeDOTS trainer, KwaZulu NatalTshepo MatsieDOTS trainer, Free StateKholekile “KK” ZondaniOffice Administrator,Cape Town

Matimba Mabale,Office Administrator, LimpopoShirley NhlapoCentre Manger, North WestMohapi KutoaneDOTS trainer, North WestNaomi NgobeniDOTS trainer, LimpopoJapisa MathonsiCentre Manager, LimpopoJonathan MotsamaiDOTS trainer, North WestWinnie MgudlwaCentre Manager, Western CapeKhosi XasoDOTS trainer, KZNThandi NtshuduOffice Administrator, AmatholeKelebogile LentselaOffice Administrator, GautengJane MatheDOTS trainer, LimpopoZoliswa ChigwaruDOTS trainer, GautengJim VolgraaffCentre Manager,Northern CapeThandeka NtlabaOffice Administrator, North WestThsifhiwa TshifhangoActing Centre Manager,GautengJoseph MolopeCare Taker, Gauteng

“ Tell every man,woman and child thattb can be cured.”