1. National Tuberculosis Control Programme Identifying and Relieving Barriers in Accessing Tuberculosis Care with the Tool to Estimate Patients' Costs Presented by Dr. Nii Nortey Hanson-Nortey On behalf of Dr. Frank A. Bonsu Programme Manager NTP Ghana

2. National Tuberculosis Control Programme Investigators Margaret Gyapong – Dodowa Health Research Centre Moses Aikins – University of Ghana Sch. of Public Health Elizabeth Awini – University of Ghana Sch. of Public Health Frank Bonsu – National TB Control Programme Verena Mauch – KNCV Tuberculosis Foundation

3. National Tuberculosis Control Programme Background Treatment of TB in Ghana is FREE but patients incur other costs: – Transportation, Hospital stays, Reduced working hours, Social Costs The average TB patient loses 3 – 4 months of work-time, and up to 30% of yearly household earnings (WHO) TB annually robs the world's poorest communities of an estimated US$12 billion in lost income. TB creates a vicious circle: the disease exacerbates poverty, which in turn increases the likelihood of contracting TB. Uganda Study (Aspler et. al. 2008) – Median total patient cost for diagnosis & 2 months treatment is $24.78. – This constituted 48% of patients income. – Costs to patients on clinic-based DOTS were 3X greater than patients on self administered DOTS.

4. National Tuberculosis Control Programme Rationale Need to identify barriers and reasons for delay to timely diagnosis and treatment. Economically and socially disadvantaged should not face barriers to seeking care TB should not be at the beginning of a spiral into poverty – Costs to TB patients can be effectively reduced In Ghana treatment cost information available for Malaria & HIV not TB Costing tool develop by Poverty Sub working Group of Stop TB Need to identify barriers and reasons for delay to timely diagnosis and treatment. Economically and socially disadvantaged should not face barriers to seeking care TB should not be at the beginning of a spiral into poverty – Costs to TB patients can be effectively reduced In Ghana treatment cost information available for Malaria & HIV not TB Costing tool develop by Poverty Sub working Group of Stop TB

5. National Tuberculosis Control Programme OBJECTIVES Before diagnosis, during treatment and after diagnosis – Estimate direct and indirect costs to patients and their families – Assess help seeking behaviour of patients – Assess factors affecting health care seeking behaviour – Document coping strategies of TB patients Before diagnosis, during treatment and after diagnosis – Estimate direct and indirect costs to patients and their families – Assess help seeking behaviour of patients – Assess factors affecting health care seeking behaviour – Document coping strategies of TB patients

6. National Tuberculosis Control Programme METHODS

7. National Tuberculosis Control Programme Study Areas Upper East – Less Endowed – Fewer Health Facilities – Difficult access to health care – Poor case detection and treatment success rates Eastern Region – Better endowed – More health facilities – Easier access to health care – Good case detection and treatment success rates

8. National Tuberculosis Control Programme Study Districts 2 regions purposively selected – poor & well performing – Upper East: all districts covered (11) – Eastern Region: selected districts (14) All categories of facilities in selected district – Public: Hospital, Health Centre, CHPS – Private: Missionary, Private clinics Sample size: minimum of 200 – Depending on number of cases reported in the selected districts 2 regions purposively selected – poor & well performing – Upper East: all districts covered (11) – Eastern Region: selected districts (14) All categories of facilities in selected district – Public: Hospital, Health Centre, CHPS – Private: Missionary, Private clinics Sample size: minimum of 200 – Depending on number of cases reported in the selected districts

9. National Tuberculosis Control Programme Target Population Inclusion Criteria New diagnosis (NOT re- treatment) patients TB patients receiving home-based care Have received at least (≥) 1 month of treatment for TB Over (≥) the age of 15 Informed Consent New diagnosis (NOT re- treatment) patients TB patients receiving home-based care Have received at least (≥) 1 month of treatment for TB Over (≥) the age of 15 Informed Consent Exclusion criteria Hospitalised cases Under (<) the age of 15 No consent given Hospitalised cases Under (<) the age of 15 No consent given

10. National Tuberculosis Control Programme Data Collection Techniques Key Informant Interviews with – TB Coordinator – Health Worker – Community Volunteer Desk Review of available information Interview with TB patients – At health facilities – At home Data Collection and Analysis Team – School of Public Health, University of Ghana – Navrongo Health Research Centre, GHS – Dodowa Health Research Centre, GHS Key Informant Interviews with – TB Coordinator – Health Worker – Community Volunteer Desk Review of available information Interview with TB patients – At health facilities – At home Data Collection and Analysis Team – School of Public Health, University of Ghana – Navrongo Health Research Centre, GHS – Dodowa Health Research Centre, GHS

11. National Tuberculosis Control Programme TB Costing Tool Patient Background information Previous treatment for TB Pre Diagnosis and Diagnosis costs Treatment and Guardian costs Hospitalization and other costs Health Insurance and coping costs Socio Economic information Patient Background information Previous treatment for TB Pre Diagnosis and Diagnosis costs Treatment and Guardian costs Hospitalization and other costs Health Insurance and coping costs Socio Economic information

12. National Tuberculosis Control Programme RESULTS

13. National Tuberculosis Control Programme Respondents Study conducted in July 2009 242 identified, 159 interviewed 8 forms discarded due to incomplete information 16 discarded did not meet inclusion criteria Presentation on 135 patients

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15. Socio-Economic background of patients 60% three lowest quintiles (assets) 64% three lowest quintiles (income) – GHC 60 (USD 42.55 ) per month Annual household income (GHC 660, USD 468.09) – (Mean national annual household income GHC 1871, US$ 1,327). 72% earned no income

16. National Tuberculosis Control Programme Nature of TB patients work 82% in active employment before the disease 30% in active employment during the disease Drop in income: Males: $67.32 to $16.34 Females: $57.45 to $2.95 How regularly did you work before you became ill with TB % (n=115) Throughout the year64.2 Seasonal or part of the year30.4 Day labour4.4

17. National Tuberculosis Control Programme Nature of TB Patients work After TB diagnosis: – 69% of patients stopped working or going to school – 30% had to change jobs – 43% had someone staying at home to look after them – 52% of carers quit their jobs to take care of the patients

18. National Tuberculosis Control Programme Patient and Health System Delay Health System Delay: 1.7 weeks or 12 days for all types of facilities

19. National Tuberculosis Control Programme Patients Direct Cost

20. National Tuberculosis Control Programme Mean cost for female lower than malesFemales in lower 3 quintiles spent more than males

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22. DOTS direct cost Mean total direct cost of US$ 0.50 for each visit 58 minutes per DOTS visit including waiting and travel time. Mean number of visits per week was 2.36. Total number of visits was 56.57 for the 6 months treatment regimen Total direct cost for DOTS as US$ 28.24. Females incurred more direct cost (US$ 39.02) than their male counterparts (US$ 22.32). Patients with EP TB incurred about twice (US$ 59.01) the cost for DOTS visit than those with PTB (US$26.4).

23. National Tuberculosis Control Programme 32% had been hospitalized Mean number of days spent 20.64% Mean direct cost 47.3% Females incurred more (47.9%) than males (35.5%)

24. National Tuberculosis Control Programme Indirect cost before and during diagnosis 69% had stopped work – Up to 6 months 46% – Over 6 months 54% Mean lost work time: 6 months Spent 10 months on average seeking diagnosis

25. National Tuberculosis Control Programme Income dropped 42%. Social support income increased by 48%

26. National Tuberculosis Control Programme Hospitalization costs (Direct & Indirect) Cost = Time lost due to hospitalization x mean of patients income. Time lost: mean number of days stayed in hospital /28 days – Mean indirect cost $8.17 (M: $11.76; F: $2.22) – The male incurred more indirect cost than females (5x). – Males spent more than twice the cost for females

27. National Tuberculosis Control Programme Coping Costs 47.41% borrowed money 37.4% sold assets 23% borrowed and sold assets – 47% borrowed from family – 42%neighbors and friends – 3.1%Bank – 7.81 other sources

28. National Tuberculosis Control Programme Social Cost

29. National Tuberculosis Control Programme Recommendations and Conclusions TB more than a health issue NTP to work with other agencies to ensure – Patients receive necessary support to seek care – TB patients and their families benefit from social protection packages – Employees will not hesitate to take back workers who have suffered from TB – Strengthening of community networks to reduce stigma – Case detection rates are improved through provision of more CHPS zones

30. National Tuberculosis Control Programme IMPLICATIONS FOR POLICY

31. National Tuberculosis Control Programme Relieving Patients Costs Increased information to improve awareness Improved financial access by removing fees and increasing health insurance cover Referrals from private community pharmacies directly to labs at no cost Increased participation of private sector labs in diagnosis Enhanced case finding among vulnerable groups – PLHIV, Diabetics, Prisoners, Children Providing patient support – Enabler’s, Nutrition, Psycho-social,

32. National Tuberculosis Control Programme Relieving Health Systems Delays Introducing newer diagnostics & tools – New case definition, GeneXpert, LED microscopes, Liquid culture, Chest x-rays, Increased knowledge among motivated health staff through improved quality of training & impact assessment Improved quality of care for patients through clinical care supervision & monitoring Systematic screening of patients at OPD according to new algorithms – 24-hr & 2 wks Introducing frontloading of TB specimen

33. National Tuberculosis Control Programme Relieving Social Delays Introducing strong ACSM activities using community and traditional leaders to de-stigmatize TB Engaging community-based NGOs to do educational activities and case finding Systematic contact tracing among contacts of index cases ACSM: to reduce patient diagnostic delay Strengthen community support systems for improved outcomes using NGOs Provide community based care using community volunteers

34. National Tuberculosis Control Programme We have the solution Invest in Ghana’s Plan to Stop TB We have the power to Stop TB

35. National Tuberculosis Control Programme ACKNOWLEDGEMENTS Staff of NTP – National, Regional and District level Staff of Navrongo and Dodowa Health Research Centres Staff of the various facilities TB Patients and their families

36. National Tuberculosis Control Programme THANK YOU