Hosted by South African television presenter Gerry Elsdon, together with Jeanne Meserve, a former reporter for CNN and ABC News, the talk show presented an opportunity to hear the experiences of women and young girls who have survived tuberculosis, overcome stigma and led their own community efforts to tackle both TB and HIV.
The discussion focussed on the main barriers that young people and women living with HIV and tuberculosis have to face in their daily life. It was a diverse but very lively group of women and girls coming from different backgrounds but bound together by the common thread (nay bacteria) of TB, which transcends geographical boundaries and social barriers. Whether it is Gerry Elsdon, a famous television celebrity from South Africa, or Alice Birungi, an HIV infected victim of sexual violence from Uganda, or Hermanique Hess, a youth representative from Africa, or Natalie Nelson Skipper from USA, or Dr Krishna Jafa, a medical doctor from India—all have faced almost similar obstacles of stigma, discrimination and neglect while battling with their tuberculosis infection.
Dr Jafa, Director Sexual and reproductive Health and TB at Population Services International, contracted, and was cured of, TB when she was ten years old. As a medical student and as a doctor she saw ‘the most horrific stigma for TB amongst fellow health givers’, with many of her colleagues opting out of rotational duties in TB wards for fear of getting infected with the disease. She attributes this on the gaps in knowledge in medical training that lead to such insensitive behaviour of doctors. She also wants more women to be reached out by linking TB/HIV services with the Maternal and Reproductive Health Services.
Gerry recalls with horror the approach to the TB clinic where she first sought treatment. The clinic was hid behind a structure marked as library and one had to walk through an overgrown path to reach the clinic where Gerry would find more than 150 people ahead of her at 6 o’clock in the morning. She wonders if the clinic was representative of the way we are hiding the real problem of TB. She would like government policies to reflect the needs of those who suffer from TB/HIV and be workable at the ground level, rather than be just fancy pieces of writing. She would also appreciate that more celebrities put their names behind the war against TB and that people have more access to health education (including TB) which can make a vast difference.
Alice, who was already infected with HIV, contracted TB through her friend with undiagnosed TB. Even Alice’s infection took a long time to get diagnosed and she had a tough time accessing the free testing and treatment she was entitled to. Having faced the problems of getting the two treatments at two different facilities on two different days, she is strongly in favour of having integrated TB-HIV services under one roof where patients are treated with dignity.
Hermanique contracted TB as a child, but was fortunate enough to get diagnosed although accidentally. She got hurt while playing at school and so was taken to a clinic where the nurse gave her a TB test and ‘it became a big blister’. She feels that there are many people who are not aware of their TB status. So they do not take treatment and go on infecting others and may die even if they are HIV negative.
Natalie contracted drug resistant while travelling overseas and calls herself a living proof of the low level of awareness in her country (USA) about the disease. It took full one year for the doctors to diagnose her problem (for a long time she was treated for stomach infection) and then another 2 years to be cured fully. If this is the situation in a country like the US it is anybody’s guess what the situation would be like in resource poor settings with weak health systems.
It is discussions like this which can help to bring the tuberculosis and HIV co-epidemic in women and children to the attention of key and audiences such as decision makers, influencers, HIV communities and the general public. It is time to give TB a human face and bring it out in the open from the confines of the medical rooms. Those infected by the TB bacteria have to shed their shyness, come out in the open and get empowered to demand quality treatment and care, which is rightfully theirs. All key affected populations will have to stand up for their right to a healthy TB free life without any discrimination.
Shobha Shukla - CNS
(The author is the Managing Editor of Citizen News Service (CNS). She is a J2J Fellow of National Press Foundation (NPF) USA. She is supported by the Lilly MDR-TB Partnership to report on-site on TB related issues from XIX International AIDS Conference (AIDS 2012). She has worked earlier with State Planning Institute, UP and taught physics at India's prestigious Loreto Convent. She also authored a book on childhood TB (2012), co-authored a book (translated in three languages) "Voices from the field on childhood pneumonia" and a report on Hepatitis C and HIV treatment access issues in 2011. Email: shobha@citizen-news.org, website: http://www.citizen-news.org)