Human rights violations in people with TB
Human Rights have long been ignored in TB 'Control', but are a foundation for improving care as outlined in the International Standards for TB Care (ISTC) and the Patients' Charter for TB Care (PCTC). At the 40th Union World Conference on Lung Health, delegates spoke about human rights violations that challenge TB care and control on the frontlines in their national contexts.
"Dominant human rights violations in TB patients are in those who have co-infection of HIV. There is absolutely no doubt in my mind or in those who work in the field, that when you have HIV combined with TB, there is immense stigma and shame apparently associated with HIV. My own sense is that TB patients are partially discriminated against it is not as extreme not as severe and not as comprehensive open system that we have against HIV. But I am speaking in southern African environment and it might be different in other parts of the world. Certainly the struggle against both, stigma and discrimination against TB and HIV, or any other diseases, because sexually transmitted diseases are also discriminated against, should be fought against vehemently. In the case of TB and HIV one of the drawbacks of this discrimination and isolation of patients is that it drives the disease underground and actually leads to greater public health damage by being widespread and therefore is fundamentally a bad result from public health point of view not only from ethical or moral point of view" said Professor Hoosen Coovadia, noted paediatrician and expert in perinatal HIV transmission, former Head of the Department of Paediatrics at the University of Natal until 2000 and Victor Daitz Professor for HIV/AIDS research at the University of Natal, South Africa.
"Every TB patient has the right to get high quality standards of prevention, treatment and care services. At present TB programmes don't reach every patient who needs care in India. Some issues like working hours of TB-services which don't suit some patients, need to be addressed by adjusting timings. TB patients should get proper diagnosis and other services as required in reality - just drugs available on paper is not enough, the services must reach the patients. One of the good TB strategies should be to engage TB patients. The cured TB patients can advocate with new TB patients and in communities to improve TB responses. These cured TB patients can spread the message that TB is curable, thereby reducing TB-related stigma. They can also be engaged in strengthening social movement to eradicate TB" said Dr D Behera, Union Karel Styblo Awardee for Public Health 2009 and Director of LRS Institute of Tuberculosis and Respiratory Diseases, New Delhi, India.
"The literacy rates among TB patients are low, they are less aware of their own rights and responsibilities related to TB care and services. There is enormous social stigma related to TB prevalent in our society that further put them at risk of human rights violations. Patients of TB are often not comfortable with disclosure" said Dr Darakshan Badar, Programme Manager, Provincial TB control Programme (PTP), Lahore, Pakistan.
"Bangladesh is a success story in terms of TB control. However previously we had lot of TB-related stigma due to which TB patients were isolated at times from their families. Now TB patients go on their own to seek TB care" said Dr K Zaman from ICDDRB Bangladesh. All is not good too in Bangladesh. "Lot of TB patients go to general practitioners outside DOTS and get treated with a range of antibiotics instead of being referred to DOTS" says Dr Zaman. "I conducted study in the past, where 50% of new TB patients were found to be resistant to at least one anti-TB drug, and 5.5% had MDR-TB" adds Dr Zaman.
"In DRC, we have organizations of cured TB patients to help other patients to minimise stigma. TB patients can share their difficulties and concern with each other in this network during the treatment and successfully complete DOTS. These TB patients' groups have been there in DRC for the last ten years. In Kinshasa, many TB patients were defaulting earlier so NTP realized the importance of engaging cure TB patients and counselling new TB patients on taking TB treatment on time. These TB patients' led groups have upped the TB cure rate in DRC to 90%" said Dr Jean Pierre Kabuayi Nyengele, Deputy NTP Manager, Democratic Repubic of Congo (DRC).
"It is a right of TB patients to access prevention, diagnosis, treatment and care services. But that is not happening because of range of reasons including weak health systems, suboptimal infrastructure, lack of facilities" says Dr Peter Kimuu, TBCAP, Kenya.
"In our context, female TB patients have more problems in accessing existing services for TB. Female TB patients find it difficult to get engaged, married or those who are already married, often get divorced due to stigma related to TB" shares Dr Ejaz Qadeer, National TB control Programme (NTP), Pakistan.
"Female TB patients face a lot of problems and we need to establish protocol and guidelines to address gender-specific issues in TB programmes" suggests Dr Razia Fatima, Programme Officer, National TB Control Programme (NTP), Islamabad, Pakistan.
There are many more points to ponder and decide whether these qualify as human rights violations too:
- Requiring patients pay for any diagnosis and treatment of TB, a declared "threat to public health".
- Denying patients social support through peer-groups and hotline services.
- Forcing innocent people to take toxic drugs that are not quality assured by WHO standards.-
- Not adhering to treatment for infectious TB and knowingly putting others at risk.
- Refusing to treat extra-pulmonary MDR-TB because it is non infectious.
- Not informing patients of their Rights and Responsibilities (PCTC/ISTC).
- Requiring public healthcare personnel to work without adequate infection control.
- Not providing palliative care for MDR/XDR patients for whom treatment is not available or viable.
Do they and many other such situations people with TB deal with on daily basis, qualify as human rights violations? Speak your world!
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