Can TB patients say "Rights Here, Right Now"?
It is beyond doubt that community-led health responses have yielded satisfying results, yet genuine involvement of affected communities in TB control, is far from optimal. Nevertheless there are significant advancements made over the past years to push TB control stakeholders to meaningfully engage TB patients at every level of the TB response. "The theme of this year's XVIII World AIDS Conference is Rights here, Rights now, and from the Roadmap of HIV/TB sessions it is very encouraging to see that the Rights of TB-HIV co-infected patients are well represented during what promises to be a very full and interesting week" said Dr Anthony Harries, Senior Advisor, International Union Against Tuberculosis and Lung Disease (The Union).
Over the past years, one of the turning points for TB control policy is the drafting of the Patients' Charter for Tuberculosis Care (The Charter), which was a result of a widely consultative TB-patients' led process seeking input from high burden countries. The Charter presents rights- and responsibilities- based framework to improve TB responses by mobilizing communities as equal partners effectively. The Charter is an official part of the global Stop TB Strategy, and is potentially a powerful tool to mobilize affected communities in advocating for, and achieving International Standards for TB Care (ISTC) in their local contexts. But have we rolled The Charter out? Is it really getting the support and mandate that it ordains? And, if not then why not?
"Which Charter are you talking about? Even being able to get my medicines is a big relief for me. I am so weak, and at times, it is so difficult to reach the DOTS centre. So many problems (are there in my life). I have never seen this Charter document in any clinic, but what I do want is: to not stand in long queues, not to be seen as someone who has done some wrong by contracting TB, not to be seen as helpless. I want to take care of my family, drive my rickshaw and fend for the needs of my wife and son" was an outburst of a rickshaw puller who was waiting to get TB treatment at a DOTS centre in Barabanki, India (name withheld upon request). What he wants, is actually, guaranteed to him by The Charter that is a part of the India’s national TB programme - Revised National TB Control Programme (RNTCP).
"Doctors at the AIDS clinic at the CSM Medical University are supportive and sensitive, they do treat me with respect and dignity, but when I go to other clinics like TB clinic or skin clinic or general medicine OPD, or other health centres in my town, I am looked down upon when I disclose my HIV positive status" said another person living with HIV for 7 years who had earlier completed TB treatment successfully in Lucknow. "There were times, I didn’t want to go to DOTS centre and get discriminated or stigmatised, it made me feel humiliated, but then thought of my family, and gathered courage to complete the TB treatment successfully," said he.
What people dealing with TB and HIV seem to want is healthcare with dignity, as a matter of a basic human right. They want to be treated respectfully, and not with disdain due to an illness or a condition. They want their family to be healthy. This is exactly what The Charter talks about. Despite of The Charter being an official component of the global Stop TB Strategy, and of India's RNTCP, there is a very long road to the point where The Charter can be implemented optimally and yield significant results in terms of improving TB and TB-HIV responses at the community level.
Let’s hear from Delhi-based people whether India's national capital Delhi, has rolled out The Charter. "I have never seen the The Patients' Charter for TB Care displayed in any TB clinic, ever. I am glad to hear about a Charter that talks about both: the rights and responsibilities. I agree with this approach because rights' based advocacy demanding treatment and other services with dignity are as much justified, as are the responsibilities people have towards public health. I will suggest that we should do a self-assessment on where are we right or wrong, and change our behaviour accordingly. For example, talking about rights is good, but it is our responsibility as people with TB or TB-HIV co-infection to remain away from all kinds of addictions like alcohol. It is also our responsibility to be aware of our duties towards our families, our communities or society we live in. We need to truly love ourselves" said Hari Singh, who is a National GIPA (greater involvement of people living with HIV/AIDS) Coordinator with the Indian Network for People Living with HIV/AIDS (INP+), and an Executive Board Member, Delhi Network of people living with HIV (DNP+).
Again, what Hari Singh is talking about is engrained in The Charter – it talks about responsibilities of TB patients.
The Patients' Charter for TB Care talks about the responsibility to share information, to provide the healthcare giver as much information as possible about present health, past illnesses, any allergies, and any other relevant details; to provide information to the health provider about contacts with immediate family, friends and others who may be vulnerable to TB or may have been infected by contact; to follow the prescribed and agreed treatment plan and to conscientiously comply with the instructions given to protect the patient’s health, and that of others; to inform the health provider of any difficulties or problems with following treatment or if any part of the treatment is not clearly understood; to contribute to community well-being by encouraging others to seek medical advice if they exhibit the symptoms of TB; to show consideration for the rights of other patients and healthcare providers, understanding that this is the dignified basis and respectful foundation of the TB community; among other salient points on rights and responsibilities based framework.
"How ethical is it to providing treatment for anti-TB drug resistance without quality counseling? The treatment literacy, infection control, toxicity and side-effects related to the treatment, adherence and a range of other issues need to be addressed in counseling sessions," believes the activist from the West Bengal Network of people living with HIV (BNP+) in India. He legitimately needed information on TB treatment adherence, related side-effects, drug toxicity and other related issues. Being living with HIV, he had relatively much more AIDS-related treatment literacy and awareness about his rights and responsibilities than he had on TB-related care.
Unless the healthcare workers and people with TB/ drug-resistant TB or TB-HIV co-infection are provided an environment of dignity and respect, to participate as equal partners of TB care and control, how else are we going to improve the responses to TB and HIV?
The people with TB, particularly those who have successfully completed the anti-TB treatment, are 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. Let's hope the XVIII World AIDS Conference in Vienna, can give enough thrust to push stakeholders to proactively roll out The Charter and use it as a tool effectively to mobilize communities, engage them as equal partners with dignity and achieve higher standards of TB Care. (CNS)
BOBBY RAMAKANT - CNS