Community Perspectives on TB

1. Community Perspectives on TB CAB Presentation Presented by Martha Tholanah 5 May 2017 UZ-UCSF Annual Research Day

2. We are here as community representatives in research • We bring the voices - applause, concerns and aspirations - from the communities in which we reside • We hope the messages from community will enlighten, inform, enhance and help shaping of future studies • Much progress has been made in combating TB, but much more can be done to end TB • It is possible to end TB • No one should be left behind

3. We Applaud Advances.. • With the advent of use of Gene Xpert machine, TB treatment is reduced to 6 months as compared to 8 months • also measures Rifampicin resistance • Research and policies have greatly contributed to the reduction of incidence and prevalence of TB • Shortening of duration and pill burden (fixed dose combination) • Short course obviously reduces serious risk of worsening resistance to TB – MDR and XDR • Cost effective and improves cure rate as well as quality of life for the patient and his/ her family

4. We Celebrate • Political commitment by leaders through the TB caucus – launched July 2016 • Decentralisation of services • The media increasingly taking up the community stories on TB • The MOHCC and The Union initiating and supporting a mentorship programme for journalists covering TB stories • The UZ-UCSF for the increasing number of TB studies being taken on board

5. Concerns • For one to be diagnosed for TB they pay consultation fees (Hospital $10 & clinics $5) and chest x-rays • Other forms of TB (other than pulmonary) are more difficult to diagnose, hence expensive • While the policy on screening HIV and TB is in place, it is not always implemented • Access to TB treatment is a challenge to those living in the rural areas and peri-urban farms • With the difficulties in the economy, many young people are engaging in artesanal mining, increasing their risk of acquiring pulmonary TB due to silica dust and poor ventilation.

6. Concerns • Isoniazid preventive therapy adverse reactions – not much information given by HCW (outside research) • Poverty - • Diagnostics – non-availability of diagnostic machines, or broken down machines, shortages, • No vitamin supplements (pyridoxine) supplied – in some cases • Little community education on chronic conditions that elevate the risk of TB infection, e. g. diabetes mellitus, HIV • Advocacy and funding for TB prevention and treatment is not prioritised

7. Women and TB • Women bear the brunt of the burden in the community regarding religious and cultural/ traditional practices that hinder access to medical assistance. • Some churches bar their members from going to clinics for medical treatment. • However, the members do not live in isolation when outside church services, hence they can continue to spread TB when there is no correct treatment. • Women, as carers in the home of those who are ill with TB, are at risk of acquiring the infection.

8. Women and TB • Women who believe in medical treatment, and are in religious sects who deny it, often have to seek medical treatment behind the backs of their spouses and religious leaders • This results in difficulties for women in terms of adherence as they also try to conceal the medicines • This can also result in many cases of TB in the community remaining undetected • The burden is multiplied several times over when the woman is disabled, or where she has to care for someone with TB who is also disabled.

9. TB and Disability • Many times poverty is an integral part of this combination • Access to health facilities is hampered by mobility difficulties as well as lack of money for bus fares • Adherence may be hampered by inadequate nutrition as the person with disability may be unable to fend for themselves • People with disabilities face several layers of stigma and discrimination – disability, poverty, TB infection, HIV infection, CVD, Hypertension, mental illnesses

10. Children and TB • Difficult for communities to identify TB symptoms in children – this prevents early presentation at health facilities for further investigation • Poor nutrition due to economic challenges worsen outcomes for children • High levels of stigma and discrimination make some parents fear disclosing a TB diagnosis as some communities associate this with HIV infection • Trying to maintain secrecy of child’s TB diagnosis result in some parents not giving the medicines at prescribed times, or missing doses altogether

11. Our wishes… • Wider range of TB regimens to lighten the burden for patients • More options for PLHIV on ART as we worry about limited options versus drug-drug interactions • More studies to ensure the pill burden is further reduced to improve adherence • Need more research on TB treatment formulations for children and adolescents, as we find them being given adult formulations • The support that used to be given in the intensive phase (DOTS) is no longer being offered at the level it used to – we need this to be restored • There is need for support groups for people with TB so as to deal with the high levels of stigma and discrimination

12. Acknowledgements • People with TB who freely shared their stories • Health care workers in the communities • Clinical research site and staff • MOHCC • The Union • Regulatory authorities • Community Advisory Board members • Community department