ZERO STIGMA, ZERO TB!
TB Proof was founded in 2012 by South African Health Care Workers and Students after multiple personal experiences with occupational tuberculosis, particularly multidrug-resistant TB. This grassroots healthcare and TB survivor initiative has three main goals:
- To “TB PROOF” our colleagues, students and patients by creating greater awareness of and protection against occupational, nosocomial (healthcare facility-based) and community-based TB transmission through education and activism.
- To destigmatize all forms of TB – draw particular attention to drug resistant TB (DR TB) and occupational TB by collecting and disclosing proof of an alarming rise in cases. Workers living with HIV are at particularly high risk and need special consideration and support.
- To mobilize national and global resources through patient advocacy to help address shortcomings in prevention and treatment strategies, both for health care workers and more importantly, the population we serve.
Summary of Activities:
- Occupational Awareness and Protection Teaching Sessions:
There is growing evidence that Health Care Professionals working in developing countries and/or resource constrained settings have limited or incorrect information regarding the risks of TB exposure and infection, particularly drug resistant strains. We aim to empower staff members and students by creating greater awareness through our websites and multiple contact sessions. Since we have started sharing our stories, we were startled by the sheer number of occupational TB accounts that we have encountered. The problem has largely been hidden due to fear of stigmatization (particularly in the context of the HIV epidemic), which is one factor we are trying to address with public disclosures that are as open and informative as possible.
The student information sessions are driven by a group of enterprising medical students who conducted an interventional study among various groups of health care students that are at increased risk of TB transmission. The pre-intervention questionnaire was followed by an information session that consisted of personal accounts of occupational TB / MDR-TB, guidelines on how to use personal protective equipment (PPE) and recommendations on other preventative measures. The hour long session was concluded by a post-intervention questionnaire to assess what impact the session made on the students’ knowledge, attitudes and predicted future practices. The study findings were presented at the South African Association of Health Educationalists (SAAHE) as well as the International Union against Tuberculosis and Lung Health Conferences in 2013.
- Research, Surveillance and Policy Strengthening:
- We are working with relevant stakeholders (WHO, National, Provincial and Academic Teaching Institutions) to improve existing TB Infection Control Policies for health care workers, students and patients and to draft policies where there are none.
- Working with Occupational Health (ILO and NIOH) to strengthen surveillance systems.
- AndroidApp – TB Proof: Facility TB risk report form.
- TB Proof related student study (due for publication – see above for more details, please).
Information gathered will be used to improve existing education, support and infection control measures and inform future strategies.
- Broader advocacy work:
Members of TB Proof have been fortunate to share their personal experiences on various National and Global platforms, including conference presentations, panel discussions and media interviews. The following are focal points:
- How difficult it is to access and then cope with drug resistant TB care, even under the “optimal” treatment and support conditions that were available to some of our members. Clearly the vast majority of patients face far greater challenges with more dire consequences. More user-friendly regimes and greater levels of patient support are urgently needed to improve treatment outcomes.
- Promoting the accelerated development, testing and compassionate use of novel TB drugs: Dalene von Delft was very fortunate to get compassionate access to bedaquiline in 2011, but the South African Medicines Control Council inexplicably withdrew approval shortly thereafter. Access is slowly improving, but development of promising new drugs remains hamstrung by various financial and legislative restraints. Safety and efficacy are critically important, but these considerations should be balanced against the low efficacy and tolerability of existing ‘treatment’ options.
- The emergence of incurable TB – are our drug resistant TB programmes failing? South Africa has the largest number of XDR-TB patients documented in the world, with cure rates under 20%. Discussion about how to identify and address shortcomings at programmatic and health system levels as well as the more efficient use of limited resources.
- Alarming rise in occupational TB cases, particularly drug-resistant strains, coupled with deep-rooted stigmatization and suspected high rates of non-disclosure. Health Care Workers living with HIV are particularly vulnerable to stigmatization and require additional support.
- Reaching the 3 million: The WHO estimated that 3 million tuberculosis sufferers were not diagnosed in 2012. South Africa is one of 12 countries that represent 75% of the undiagnosed 3 million cases. Missed and delayed diagnoses of TB in patients in the private and public health sectors of South Africa (and other high burden countries) are alarming problems we hope to address through advocacy and education.
- Putting the patient first: we strongly support the recent focus on the safe service integration at primary health care and community levels. This includes not only HIV and TB integration, but holistic patient centred services.
- Urgent need for an effective new TB vaccine.
More details are available at:
Please feel free to contact us if you have any feedback regarding future activities or support.
Yours in safer, more effective and more equitable protection against TB for all!
TB Proof team