"I felt like a prisoner in the paediatric ward…"

Alice Tembe, CNS Correspondent, Swaziland
Eleanor Frame
…So said Eleanor Frame, an 18 year old teenager from UK, who survived TB. Eleanor shared her story at the 47th Union World Conference on Lung Health in Liverpool. She said that she had no idea about what TB was, and nether did her classmates, until she herself was diagnosed with it at the age of 14.

And that lack of knowledge bred fear in her and discrimination from her friends who isolated her and also resulted in the delays in her diagnosis by her medical doctor. “It was dismissed as just a chuckle, a bad chest infection, not once but twice by my doctor, until my mother insisted on the test”, she said. “I sent my teacher an email to tell her that I was sick with TB and will not be in school for a while. She posted it on the school’s year board, and in a split second my whole class knew about my condition.”

While speaking with CNS (Citizen News Service), Eleanor recalled vividly that on the day she was diagnosed with TB,  she was locked up in a room at the paediatric ward while her elder sister and mother went to the general ward to be screened for TB. “When I needed to use the bathroom the nurse held up a written sign at the door saying that she was not allowed to let her out of the room because she had TB. It was for almost 45 minutes that I was trying to push the door open and it was awful. I felt like a prisoner. They made me wait for my mother to come back and take me to the bathroom”.

But she is grateful to her family for all their support during her long treatment period. She had drug buddies in her dad and sister who helped her go through the nightmare of swallowing 12 tablets everyday. On a personal level she still had to deal with the embarrassment of side effects—like the orange coloured sweat marks that would show on her shirt during sports activities and shock her friends.

Indicatively, stigma amongst adolescents and even healthcare staff plus lack of community support becomes a critical factor in their treatment success. According to Dr Kathryn Snow, an Epidemiologist at University of Melbourne, adolescents need to be recognised as being neither children nor adults. Unlike children, adolescents develop infectious TB and hence have the chance of peer to peer transmission. As they spend a longer time outdoors, it results into higher respiratory contacts. And yet there is little to no age-aggregated data for adolescents living with HIV and or drug sensitive or drug resistant TB.

Acknowledging the importance of the theme of the conference, “Confronting Resistance: Fundamentals to Innovation”, Dr Janet Ginnard, of UNITAID, said that MDR-TB accounts for 6% of all TB cases, 14% of all TB deaths and 26% of all TB costs, and this is just a bit too much to ignore.

While the introduction of Bedaquiline and Delamanid in June 2015 was met with great relief, Alena Skrahina, Deputy Director at Scientific and Practical Centre for Pulmonary Tuberculosis in Minsk, Belarus lamented that when it came to administer the new lifesaving drugs to children there was quite a bit of resistance from the paediatricians. They felt that there is only partial approval of this drug, that there are no reports of successful and safe clinical studies with children, and that the drugs would be too toxic for children.

She said that, as a mother herself, “When a child is faced with imminent death due to MDR-TB, at that point it should be acceptable to skip the protocols”. The children were dying anyway and these drugs at least gave a fighting chance that they could live. So she administered Bedaquiline and Delamanid to 14 children through compassionate use. This happened in June 2015, and as of now, all these children are healthy, well with very minimal side effects. On a lighter note, Dr Alena Skrahina said, ‘When we stopped enrolling new young patients, while waiting for the next consignment of these drugs, my paediatrician colleagues would call me daily to ask if I could at least make a plan for taking in more children on this new treatment”.

Dr Liz Lowenthal, Associate Professor of Paediatrics at the Children’s Hospital in Philadelphia, noted that adolescents seem to be biologically programmed to test boundaries. One 17 year old adolescent said, “When my mom asks me to drink my medicine, I feel angry. I open the bottle and then I close the bottle and then I do not drink. I pretend….when it is my time to drink the medicine, I drink only if nobody asks me to drink.”

Experiences and case studies from clinicians, researchers and adolescents show that it is imperative for TB/MDR-TB programmes to:
  • (i) accelerate awareness on TB among adolescents even in the low risk settings; 
  • (ii) incorporate multiple social media applications for awareness; 
  • (iii) allow personal ownership (beyond treatment goals) and decision making for adolescents during therapy; 
  • (iv) strengthen follow up and patient tracing, advance treatment support systems- like smart phones and video observations for drugs intake; 
  • (v) address potential problem areas with the adolescent, in private, at the start of therapy - like recreational drug use and sexual activity - which are usually not discussed in the presence of a parent/guardian.

While children, adolescents and adults are all adversely affected by drug sensitive as well as drug resistant TB, but more often than not, as technology, drugs, policies and guidelines advance, children and adolescents are at the end-tail of the discussion. Allowing the avoidable demise of the younger generation at the hands of a curable disease is truly the demise of humankind.

Alice Tembe, CNS Correspondent, Swaziland
29 October 2016
(Alice Tembe is providing thematic coverage from the 47th Union World Conference on Lung Health in Liverpool, UK, with kind support from Lilly MDR TB Partnership. Follow her on Twitter: @Tembe3)