Patients' Charter for TB Care is in favour of doctors, not against them
It was not surprising to hear from a community activist at the World Health Organization (WHO) Stop TB Symposium before 40th Union World Conference on Lung Health opens in Cancun, Mexico, that when she asked TB programme managers on why are they not implementing the Patients' Charter for Tuberculosis (TB) Care [PCTC], she got the response: "doctors say that it [PCTC] actually goes against them." Blessina Kumar, TB/HIV activist from India was addressing the WHO Stop TB Symposium in Mexico.
This is not surprising to hear because despite of community-centric Global Stop TB Strategy and rising mandate for community engagement in TB programmes, there are healthcare providers like the one quoted above who still belong to old school where TB was a medical problem and response too was medical.
The WHO Global Stop TB Strategy and Global Plan to Stop TB (2006-2015) support community involvement. The Patients' Charter for TB Care (PCTC) is an official part of the Global Stop TB Strategy which is meant to be a tool to mobilize and empower communities in achieving the International Standards of TB Care (ISTC). It is an official component of national TB programmes in many countries including India. However there is no doubt that the investment and efforts that have gone into rolling out the Charter, are grossly inadequate. It is not just a "chart" in the clinic, as commented a delegate yesterday.
The Charter (PCTC) is not against what doctors are trying to achieve in TB care and control - it is a tool to make their task easier in improving TB programmes - in terms of achieving earlier diagnosis, active TB case finding, counselling, contact tracing, adherence counselling, reducing stigma and discrimination related to TB, among other benefits this tool can provide if used in the right spirit.
"We need to raise awareness about the rights and responsibilities of people with TB, use the Charter as a tool for empowering the communities and mobilizing them to advocate for enhancing the standards of TB treatment and care in their localities" asserts Maxime Lunga, Vice President of World Care Council (WCC).
In South Africa, a MSF report released earlier this year on World TB Day (24 March) showed how community-based approaches to drug-resistant TB have improved treatment outcomes considerably.
The people with TB, particularly those who have successfully completed the anti-TB treatment, is central to improving the TB response. The communities have a key role in increasing TB case detection, reducing TB-related stigma, partnering with healthcare staff, community awareness, screening of household contacts, encouraging rapid diagnosis to decrease the delay before starting treatment, improving treatment protocols, providing education and adherence counselling for patients and implementing infection control measures in clinics, patients' homes, and in the community, believes Maxime.
Experts at the WHO Stop TB Symposium had earlier listed out the high risk populations the TB programmes should reach out to for earlier diagnosis of TB. With different levels of multi-faceted stigma-related to TB, how will the doctors operationalize these policies on active TB case finding? The answer honestly lies in The Charter among other approaches.
Affected communities need to be engaged meaningfully at all levels of TB programming to use the Charter as a tool to achieve higher standards of TB care (ISTC). They need to be treated as equal partners in TB care and control, and treated with dignity, along side other stakeholders including doctors. Innovative solutions often come up from among the affected communities - since they know what works in their communities best. Affected communities are more than passive recepients of pills - their rightful place as equal partners in solving issues that affect them most on daily basis - has been long denied to them.
"Unless TB patients are diagnosed earlier, the quality of life will be compromised despite of successful anti-TB treatment" said Dr M Muniyandi, Health Economist, TB Research Centre, Indian Council of Medical Research (ICMR). "To attain better quality of life, it is important to diagnose people earlier for TB and treat them successfuly" emphasized Dr Muniyandi.
Thanks Dr Muniyandi for speaking up - the point you make is right on-spot: quality of life. This should be an explicit and core aim of TB programmes to EARLY diagnose and treat people with TB successfully so that they can enjoy highest attainable standards of health and life. And in passive case finding, it is a distant dream. Engaging communities can up the active case finding among many other benefits TB conference is raising (and has been raising in past years).
The absence of the Charter (PCTC) in the local stop TB strategy operationally is often the very barrier that blocks access to existing TB care services. Long waiting hours, stigma and discrimination related to TB, lack of confidentiality at times, unfriendly healthcare services for people with certain conditions, are well documented barriers that impede access to existing services. Other obstacles that limit the impact of TB programmes which are now coming to light over past years, were the realities people with TB were dealing with. Long distances they have to travel to clinics, economic impact on their livelihood during anti-TB treatment which may further exacerbate vulnerabilities to TB and other conditions of them and their families/ communities, are just some of them. Communities knew it before, and knew it best. Empowering them will not only bring problems in light sooner, but also give them a right and responsibility as equal partner to come up with effective solutions that work in their own contexts.
HIV/AIDS programmes have shown remarkable outcomes by genuine community engagement at all levels, however the involvement of communities in TB programmes is clearly sub-optimal, if not absent.
The outcome of not implementing the Charter is what no nation can afford - affected communities need to be supported by the Charter, to use the rights and responsibilities framework it promotes in mobilizing them to work as equal partners with other stakeholders (including doctors) to achieve higher standards of TB care (ISTC).
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