Diana Esther Wangari, CNS Special Correspondent
Do you remember the time when you had just passed thirteen years of age but were still below eighteen? You were technically not an adult but neither were you a child. Your parents and relatives probably told you how 'now' you had become an adult and if you were a boy, that came with a certain sense of pride-- "You are now a man", but if you were a girl, the message was laced with caution-- "You are now a woman, you have to be more careful." Being a teenager has never been easy and is probably more difficult if you are a girl because the rules that apply to boys are not necessarily the same standard by which girls are judged.
This worrying fact came to mind as Loyce Maturu related her story during the 45th Union World Conference on Lung Health session on dealing with adolescent TB and HIV. She not only had to scale the mountain that is teenage-hood, but had also to deal with being HIV positive and subsequently contracting TB. Her parents had passed away when she was younger and, though not sure, she thinks they died of TB. There could not have been a better speaker to describe the challenges that teenagers face when it comes to the HIV and TB co-infection menace and there could not have been a more moving story.
"We are taking a lot of drugs like antiretroviral therapy (ART), cotrimoxazole prophylaxis therapy (CPT), anti-TB drugs and other antibiotics," Loyce said as she went on to describe the challenges she and her peers face on a day to day basis. "Adherence is a big issue, not just because of the pill burden but because of myths associated with taking the medication. You go to one place and they tell you not to ever miss a pill; another tells you that the adverse effects of drugs can be so severe that it might not be worth taking the medication; still others tell you that you should just pray to get better."
Although adolescents with TB typically present with adult-type disease, but they represent a vulnerable population that falls between child and adult TB control efforts. They face unique challenges of TB exposure, adherence, retention and support, and also face the risk of MDR-TB and TB/HIV co-infection.
Concerted efforts are needed to understand the epidemiology, disease manifestations and best means of treating and supporting this vulnerable population. Of course, stigma has a big role to play as well, for even in these modern times, people remain cautious of anyone infected with, not just one but, two transmissible conditions. However, the main message was how different and difficult it becomes when you are a teenager. You might be ill, but your body is evolving, and like other adolescents you have questions. But who do you turn to? You have all these hormones cascading through your body and your sense of curiosity and awareness has never been more alert. Remember how difficult it was to find someone you could talk to.
What do you think the situation is like for Loyce and her peers?
"We need clinics where we can be free to talk and explain the difficulty of adherence without being labelled difficult and rebellious," Loyce pleaded. "We need somewhere we can go and ask questions about sex and relationships without being judged."
The desperation in her voice was evident, she knew very few such clinics existed. But that is no surprise. I myself have never thought of it in that manner, have you?
Often when you think of persons living with the double burden of HIV and TB, we consider the health challenges that they face and rarely analyze the psychosocial burden of the diseases, which becomes all the more important in case of adolescents. Yes, they need the pill burden to be reduced. Yes, they are hoping for drugs that have less severe adverse effects or no effects at all. But more importantly, they are asking that we listen to them and realize that their needs are different.
"Please trust and believe in adolescents, listen to them and involve them," Loyce urged, adding that “they too can aid in planning, as the decisions made affect them and who better to speak of what they need, than those in need themselves?”
We all pass through that stage of adolescence, and just because one has HIV and/or TB, does not mean that the challenges are any different-- if anything they are more. And as Loyce concluded, she reminded us all of one key fact that in all these, "Medication alone cannot nearly be enough."
Diana Esther Wangari, Citizen News Service - CNS
5 November 2014
(WHO Global Tuberculosis Programme is supporting onsite CNS Correspondents Team's coverage around TB-HIV related issues from the 45th Union World Conference on Lung Health in Barcelona, Spain. Email: diana@citizen-news.org)
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| Photo credit: Diana EW/CNS |
This worrying fact came to mind as Loyce Maturu related her story during the 45th Union World Conference on Lung Health session on dealing with adolescent TB and HIV. She not only had to scale the mountain that is teenage-hood, but had also to deal with being HIV positive and subsequently contracting TB. Her parents had passed away when she was younger and, though not sure, she thinks they died of TB. There could not have been a better speaker to describe the challenges that teenagers face when it comes to the HIV and TB co-infection menace and there could not have been a more moving story.
"We are taking a lot of drugs like antiretroviral therapy (ART), cotrimoxazole prophylaxis therapy (CPT), anti-TB drugs and other antibiotics," Loyce said as she went on to describe the challenges she and her peers face on a day to day basis. "Adherence is a big issue, not just because of the pill burden but because of myths associated with taking the medication. You go to one place and they tell you not to ever miss a pill; another tells you that the adverse effects of drugs can be so severe that it might not be worth taking the medication; still others tell you that you should just pray to get better."
 |
| Photo credit: Diana EW/CNS |
Concerted efforts are needed to understand the epidemiology, disease manifestations and best means of treating and supporting this vulnerable population. Of course, stigma has a big role to play as well, for even in these modern times, people remain cautious of anyone infected with, not just one but, two transmissible conditions. However, the main message was how different and difficult it becomes when you are a teenager. You might be ill, but your body is evolving, and like other adolescents you have questions. But who do you turn to? You have all these hormones cascading through your body and your sense of curiosity and awareness has never been more alert. Remember how difficult it was to find someone you could talk to.
What do you think the situation is like for Loyce and her peers?
"We need clinics where we can be free to talk and explain the difficulty of adherence without being labelled difficult and rebellious," Loyce pleaded. "We need somewhere we can go and ask questions about sex and relationships without being judged."
The desperation in her voice was evident, she knew very few such clinics existed. But that is no surprise. I myself have never thought of it in that manner, have you?
Often when you think of persons living with the double burden of HIV and TB, we consider the health challenges that they face and rarely analyze the psychosocial burden of the diseases, which becomes all the more important in case of adolescents. Yes, they need the pill burden to be reduced. Yes, they are hoping for drugs that have less severe adverse effects or no effects at all. But more importantly, they are asking that we listen to them and realize that their needs are different.
"Please trust and believe in adolescents, listen to them and involve them," Loyce urged, adding that “they too can aid in planning, as the decisions made affect them and who better to speak of what they need, than those in need themselves?”
We all pass through that stage of adolescence, and just because one has HIV and/or TB, does not mean that the challenges are any different-- if anything they are more. And as Loyce concluded, she reminded us all of one key fact that in all these, "Medication alone cannot nearly be enough."
Diana Esther Wangari, Citizen News Service - CNS
5 November 2014
(WHO Global Tuberculosis Programme is supporting onsite CNS Correspondents Team's coverage around TB-HIV related issues from the 45th Union World Conference on Lung Health in Barcelona, Spain. Email: diana@citizen-news.org)