Report of e-consultation and key informant interviews
This publication is a report that analyzes the content from the online consultation and key informant interviews conducted by the Citizen News Service (CNS) along with over 50 partner organizations and networks (see the list on page 45) that endorsed the campaign on childhood tuberculosis (TB). The views expressed in these articles are those of the commentators, CNS writers and the persons interviewed by them.
March 2012 CNS: This content is shared under the Creative Commons License Attribution 3.0 Unported (CC BY 3.0) license
The writers of Citizen News Service (CNS) come from affected communities who have something to say on issues they feel for, or are affected by, in their daily lives, and give a voice to the voiceless. CNS syndicates content generated in four languages (English, Hindi, Urdu and Thai) under Creative Commons (CC) attribution license and produces 4 hours of radio programmes daily for FM radio in northern Thailand. CNS: www.citizen-news.org
Citizen News Service (CNS) THAILAND: CNS, Mahidol Road, Chiang Mai â€“ Thailand INDIA: C-2211, C-block crossing, Indira Nagar, Lucknow-226016. India M: +91-98390-73355, +66-873018680 | E: firstname.lastname@example.org | W: www.citizen-news.org
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TABLE OF CONTENTS 1. Introduction…………………………………………………….……………………………………………………. 4 2. Executive Summary…………………………………………………….………………………………………… 6 CASE STUDIES – Stories from the frontlines 3. Community leadership in TB control is missing…………………………………………………… 8 4. Case Study 1: TB – The scourge of childhood………………………………………….……….…10 5. Case Study 2: TB - The ugly face of an innocent childhood……………………………… 12 PART I - Prevention 6. Controlling Adult TB Will Prevent Childhood TB…………………………………………………. 15 7. Infection control at Households Level to Prevent Childhood TB………………………… 17 8. Infection control in healthcare settings…………………………………………………….………… 20 9. TB Germs Thrive On Poor Nutrition…………………………………………………….………………. 22 10. Safe and effective vaccines can be the game change in TB control …………………. 25 11. Importance of Exclusive Breastfeeding in combating TB……………………………………. 27 12. Tobacco control can help reduce new childhood TB infections and deaths………. 29 13. IPT – Will it save children with latent TB from active TB disease?.................. 31 PART II - Diagnostics 14. Challenges In Diagnosing TB In Children…………………………………………………….………. 34 PART III - Treatment 15. Treatment challenges in childhood tuberculosis………………………………………………… 40 16. TB Factsheet…………………………………………………….…………………………………………………. 44 17. PARTNERS…………………………………………………….……………………………………………………… 45
HAVE YOUR SAY! To join the online dialogue on tuberculosis, send an email to: Stop-TBemail@example.com 3| Hearing the unheard voices: Saving children from TB
INTRODUCTION ACKNOWLEDGEMENT This publication summarizes issues raised by over 500 participants of a time-limited focused online consultation that was hosted by Citizen News Service (CNS) along with over 50 partner organizations and networks (see the list on page 45) on two themes around childhood TB in lead up to the World TB Day, 2012, and dozens of key informant interviews conducted by CNS team members with parents and care-providers of children with TB. Two CNS writers, Shobha Shukla and Bobby Ramakant, with support from a team of dedicated people such as Rahul Kumar Dwivedi, Ritesh Arya, Nadeem Salmani, Jittima Jantanamalaka, among others, need a special mention for putting this publication report together. We would like to thank all those who took active part in the e-consultation and those who were interviewed on childhood TB, especially the parents of children with TB. We will also like to thank the International Union Against Tuberculosis and Lung Disease (The Union); Dr Ajay Misra, senior Paediatrician and Managing Director, Nelson Hospital for Paediatric and Neonatal Medicine, Aliganj, Lucknow; Professor (Dr) Rama Kant, WHO Director-General Awardee (2005) and Vice President, SAARC Countries’ Surgical Association; Professor (Dr) Surya Kant, Head, Department of Pulmonary Medicine, King George’s Medical College (KGMC – now renamed as CSMMU) and President, Indian Chest Society (North); Dr Abhishek Verma, Senior Paediatrician, Dr Ram Manohar Lohia Hospital, Gomti Nagar, Lucknow; among others. Photo credits: Shobha Shukla, Rahul Kumar Dwivedi, Nadeem Salmani, Ritesh Arya and Bobby Ramakant
INTRODUCTION CNS with over 50 partner organizations and networks (see the list on page 45) had supported the e-consultation and key informant interviews process on childhood TB in lead up to the World TB Day 2012. The e-consultation was hosted on two themes, each theme online consultation spanning over two weeks. The two themes were as follows: PREVENTING TB IN CHILDREN Theme I: Getting to zero new TB infections in children by 2015 Timeline: 11-25 February 2012 Guiding question: What can be done more (or less of) at the family, community or your country level to prevent new TB infections in children?
DIAGNOSING AND TREATING TB IN CHILDREN Theme II: Getting to zero TB deaths in children by 2015 Timeline: 26 February – 18 March 2012 Guiding question: How to correctly diagnose and successfully treat TB in children in your local settings?
PARTICIPATION Over 500 members participated in the e-consultation from the following 28 countries: India, Bangladesh, Nepal, Sri Lanka, Myanmar, Bhutan, Pakistan, Afghanistan, Thailand, Philippines, Indonesia, Malaysia, Singapore, Brunei Darussalam, Cambodia, Vietnam, Australia, Canada, Mozambique, Ukraine, Zimbabwe, Zambia, South Africa, Uganda, Kenya, Nigeria, USA, UK, among others. Participants had their say through a range of channels such as: electronic discussion 4| Hearing the unheard voices: Saving children from TB
forums (eForums – SEA-AIDS (Asia Pacific eForum on HIV), Stop-TB eForum, ITPC, among others), blogs, twitter, Facebook, phone or skype interviews, among others. REFERENCE DOCUMENTS The participants were sent the following reference documents before the e-consultation: Call for Action for Childhood TB (launched in Stockholm in March 2011) WHO Stop TB Strategy Stop TB Partnership’s Global Plan to Stop TB: 2011-2015 World TB Day website information Global Tuberculosis Control Report 2011 Whole Is Greater Than Sum Of Its Parts: CNS report 2011 Tuberculosis and children: Exposing the hidden epidemic - ACTION brief Theme 1 e-consultation summary report on preventing childhood TB (2012) Revised National TB Control Programme (RNTCP) Paediatric TB guidelines, 2004 RNTCP Different Paediatric Schedule Guidelines RNTCP Annual TB Report 2011 KEY INFORMANT INTERVIEWS The key informant interviews were conducted with parents or care-providers of children with TB and translated into Hindi language as well. These voices from the frontlines brought very important perspectives and did a reality check on childhood TB. VIDEO: CNS video recorded some of these key informant interviews using simple available cameras (mobile camera, digital camera) and produced a short film (37 minutes, Hindi and English languages): Reality Check on Childhood TB (Part I and II). Part I is online at: http://www.citizen-news.org/2012/03/cns-video-reality-check-onchildhood.html Part II is online at: http://www.citizen-news.org/2012/03/cns-video-reality-check-onchildhood_22.html
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EXECUTIVE SUMMARY “We are not finding thousands upon thousands of children affected by TB because we are not looking for them as we should and because we are not treating childhood TB as a family and community issue. All children who have been exposed to TB through someone living in their household need TB treatment if they are ill with TB, and this costs just US$ 0.50 a day. If they are not ill they need preventive TB treatment with isoniazid, which costs only US$ 0.03 per day. This is so simple and inexpensive it is shocking we are not doing this already in every case” – Dr Lucica Ditiu, Executive Secretary, Stop TB Partnership With nearly 9 million new cases and almost 1.5 million deaths per year, tuberculosis is the second deadliest infectious disease in the world. Drug resistance forms a serious and increasing threat. Recent statistics from the World Health Organisation (WHO) show that the number of resistant cases is on the rise. Children are double hit; not only is the disease more difficult to diagnose and treat in children, some ten million children have been orphaned due to TB and many more have had to quit school to care for relatives or provide a living for their families. Childhood tuberculosis certainly must not be ignored. Children get TB infection from adults, and unless we do a better job in caring and controlling adulthood TB, controlling TB in children will continue to remain a distant dream. Childhood tuberculosis has been neglected for a long time and in terms of the global policy the focus has been on adult tuberculosis. The problem of childhood tuberculosis is beset with challenges. Presentation of the disease is less specific in children, and it is often confounded with other diseases like pneumonia or lower
respiratory tract infections (LRTIs). One of the main reasons for children becoming sick with TB is poverty. Children living in poor circumstances, in very crowded houses with bad ventilation/ improper air flow, and increased air pollution due to use of bio fuels or exposure to secondhand tobacco smoke become easy targets for the TB bacterium. Poor children are often malnourished which weakens their immune system, making them less equipped to fight off the disease. A child infected with TB has a very high risk of becoming sick with the disease, as compared to an adult. While an adult infected with TB has about 10% life time risk of actually contracting it, in children this risk is much higher and could be up to 40% in infants under one year of age. The risk is high, not only of becoming ill, but also of getting very severe forms of tuberculosis such as TB meningitis and miliary TB. This is one of the reasons why preventive therapy is very important in children, especially in young children under 5 who are exposed to cases of infectious TB, so that they never actually contract the disease. People have to know about TB, and they have to know that children are at great risk. So if there is an adult diagnosed with TB then it is the
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responsibility of the health centre and of the community to ensure that all the members in the household of the patient, especially the children, are screened for TB. Children who contract TB most often do so from the adults around them. In that respect, childhood TB is actually a barometer of overall TB within a community or region. Therefore, in addition to interventions aimed at children, including the research and development of new tools, initiatives to improve TB control in adults will also lead to fewer new TB infections in children. The development of new child-friendly TB drugs will help cure TB in children and help prevent them from spreading the disease. However, in terms of curtailing the sources of initial infection, the development of new and improved, simpler, and more efficient tools to prevent, diagnose, and treat TB in adults
will help to reduce the reservoir of infections that subsequently trickle to children. Stopping childhood TB simply wonâ€™t happen without support from countries at every level and effective collaboration between national TB programmes and other development programmes such as those on nutrition, food security, HIV, among others. Governments should invest in and support the development of new and improved tools for preventing, diagnosing and treating TB in children and adults, while community education about TB will help raise awareness about transmission and prevention practices that reduce the incidence of childhood TB infection. Rolling out the Patientsâ€™ Charter for Tuberculosis Care is clearly warranted so that affected communities can take charge of their own lives and get engaged with the health responses as equal partners with dignity.
Children who contract TB most often do so from the adults around them. In that respect, childhood TB is actually a barometer of overall TB within a community or region 7| Hearing the unheard voices: Saving children from TB
Community leadership in TB control is missing When we went to a nearby urban slum population with help of a NGO that works on healthcare in that population to interview parents of children with TB, we were surprised that no one came forward – implying there is no child with TB in that population. It is important to mention that we had gone to the same population in September-October 2011 to interview parents and care-providers of children with pneumonia, and held group discussions and sessions. With TB, however, the situation was radically different. When we went to the nearby DOTS centre run at a government district hospital, we came across many people with TB who were receiving TB treatment from the same population we had visited earlier. The under-current of stigma associated with TB was profound. The need for community engagement in TB care and control was never so gaping. More so when later during the interviews with parents of children with TB, some parents had undergone TB treatment themselves. Despite undergoing TB treatment themselves, the knowledge level was abysmally low. Health programmes, by being ‘medicine dispensing mechanisms at best’ are losing a golden opportunity to positively impact health (and treatment) literacy in populations they serve. This surely has a negative impact on disease control interventions and health seeking behavior of our people, and undermines their right to health.
If we do more of the same in TB care and control, results are likely to be similar. If we are really serious about achieving TB targets of eradicating TB by 2050, we need to do TB care and control differently. Despite surmounting evidence of the way effective community engagement has brought in the desired change in health responses around the world, we see very tokenistic community representation and participation with dignity at different levels of TB care and control. Commendable work has happened at the global level and to some extent, at country level in some countries, a lot more remains to be achieved when it comes to genuine community representation and participation in TB care and control. For instance, despite the Patients’ Charter for Tuberculosis Care being an integral part of the WHO Stop TB Strategy and some national TB programmes (like in India) the Charter has not been rolled out optimally. Neither the healthcare providers were aware of the Charter not were the patients or parents of children with TB we spoke with. The Charter presents a rights and responsibilities based framework to empower communities to get engaged with TB control as equal partners and help play a key role in raising standards of care (to achieve the International Standard for TB Care as recommended by the WHO Stop TB Strategy). Parents of children with TB had very minimal awareness about basics of TB. The need for quality counseling at TB service centres is undoubtedly pressing. And who
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can counsel better than someone who has been through the TB treatment herself? If we want to reach the unreached people who need TB care services, we need to do
TB control differently. Former TB patientsâ€™ groups can play a much more meaningful role in positively contributing to TB programmes at all levels, only if they are engaged as equal partners with dignity.
Health programmes, by being â€˜medicine dispensing mechanisms at bestâ€™ are losing a golden opportunity to positively impact health (and treatment) literacy in populations they serve. This surely has a negative impact on disease control interventions and health seeking behavior of our people, and undermines their right to health.
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Case Study of Akash TB – scourge of childhood This is the story of 14 years old Akash, the son of Ramkhilavan (a daily wage earner) and Rama (a housewife), who has been undergoing treatment for pulmonary TB at a local DOTS Centre in Lucknow, the capital city of Uttar Pradesh, for the past 4 months. Akash (which means the sky) is just like any other boy of his age. When I met him in an afternoon of early March, he had just finished with his exams of Class IV, and was rushing to a nearby field for a cricket match with his friends. He loves to study Hindi and English, but not Maths, and of course, he loves to play cricket. He fights with his sister like any other boy, and expects her to do all household chores, including washing his clothes. He would any day prefer biscuits and other readymade spicy snacks to homemade food. But unfortunately, since the time he started on TB medication, doctors have asked him to avoid oily and spicy food. So now he has to enjoy his meals of daal (lentils), chawal (rice) and roti (Indian bread). He cannot eat meat and fish, as his family is vegetarian. Strangely enough, the doctors have forbidden him to drink milk or curds. He does not eat pan-masala (a type of chewing tobacco which is very popular amongst the India youth). Akash is the youngest of three siblings. His eldest brother is 20 years old and his sister is 16. He had been sick with fever and cough for the past 1 year. Although it was hard on the pockets of his parents, they initially showed him to 3-4 doctors in the private sector spending around 5000 rupees a month on his treatment. “Each injection alone cost us 100 rupees”, laments his mother. This brought only momentary
relief but no lasting improvement. Then one private doctor asked for an X-Ray to be done which gave suspicion of TB. Then on a friend’s advice his father showed him in a government hospital where pulmonary TB was confirmed only after sputum test. So it took more than 6 months for correct diagnosis, although he had been sick for over a year. First they had said that treatment would continue for 6 months. Then someone at the centre told me that it will continue for 9 months. There is still no clarity about it. I will confirm this at the next investigation whether medicines will continue for 6 months or 9 months. Treatment at the government hospital is free. They do not have to buy medicines from outside, but get them free of cost from a nearby DOTS centre. Medicine is given every Friday evening for the whole week — to be taken on alternate days. After a lot of mental counting Akash said he has to eat 8 tablets every alternate day, which he eats in the evening, although the doctor said to take in the morning. Akash never forgets to take his medicines. He has already completed 4 months of treatment. But there is some ambiguity about the total duration of treatment. His father said, “.” The family uses a bio fuel cook stove to cook food, but the kitchen is in one corner of the courtyard, outside the walled brick living rooms. The healthcare providers have not told them about any infection control measures. However, Rama keeps her simple house very clean and tidy, which indeed is a treat for the eyes. It also proves that cleanliness is a matter of habit and not a matter of adequate finances. She also does not allow Akash to share his food and
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utensils with his siblings. She says that there are no visible side effects of the TB medicines, but her son has become very irritable and short tempered since he started on the anti-tubercular treatment. However, his cough has improved considerably. His mother Rama informed that she had breastfed all her children, who were all born at home—no institutional delivery. (This by no means implies that she had exclusively breast fed, as in India it is customary to give the infant water, honey, gripe water, along with mother’s milk). None of her children had been vaccinated against any disease—not even BCG. Heeding
my advice, she agrees to ask the doctors in the next visit about necessary vaccinations. She said that she had no idea as to how TB spreads and how it can be prevented. No other member of the household has been asked to get tested for TB, and the father also thinks there is no need for this as none of them have any symptoms of the disease. The father is a habitual bidi smoker and consumes alcohol too. He said he had tried to quit several times but it seems to be an incurable addiction. He wants to quit if someone can help him. Akash’s family does not attach any stigma to his disease and does not hide it from anybody as he is now undergoing treatment.
“First they had said that treatment would continue for 6 months. Then someone at the centre told me that it will continue for 9 months. There is still no clarity about it. I will confirm this at the next investigation whether medicines will continue for 6 months or 9 months”
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Case study of Jugalkishore TB: The ugly face of an innocent childhood Location: a typical urban semi slum area (in as much as the houses are not makeshift but permanent brick structures) of Lucknow, the capital of Uttar Pradesh, which boasts of the state of art medical facilities. Place: A brick walled house in a very narrow by lane, carefully protected from the prying rays of the sun, and just broad enough to let a two wheeler pass through. There is a small open verandah, leading to two dark, dingy and damp rooms, with no access to sunlight, and hardly any ventilation. One of the rooms doubles up as a kitchen, which has a mud stove run on wood fuel. The smoke from the chulha and from the bidis smoked in the house, linger in the closed environment for long. Occupants: Shiv Prasad, a daily wage earner and the sole bread winner of the family, (who is also an ex TB patient) and dutifully follows the patriarchal tradition of spending a large part of his meagre earnings on drinking liquor and smoking bidis and thrashing his wife every day; his father; his four children—three sons and one daughter—aged 14 to 3 years; Ramdulari the charming, but uneducated, hapless wife, who blames it all on her fate and ‘kismet’, waiting silently for some miracle to happen to blow her misfortunes away. She has resigned herself to a life where each day’s survival is an ordeal, and where hope has given way to mute resignation. She no longer resents being beaten/ ill-treated by her alcoholic husband every day. Though convinced of the merits of a small family, she is scared
of undergoing tubectomy, but is very sure that she will not beget another child. The Ground Reality: Ramdulari has a long tale of woe to narrate and pours out her heart to my eager ears. This is what she had to say—“My 6 year old third son, Jugal Kishore, has been diagnosed with pulmonary TB and has been undergoing free anti tuberculosis treatment (ATT) since the last one month, at a nearby DOTS centre. I never had any institutional delivery, and like my other kids, Jugal Kishore too was born at home. It was a normal delivery, but he was under weight. I could only partly breast feed him, as I was not lactating enough. He has never been a healthy child, falling sick off and on. When he was 1 month old he got the BCG vaccination in the hospital, but there was no swelling. So after 9 months an anganwadi (community) worker gave the vaccine a second time. Then also there was hardly any swelling. He started coughing when he was two years old, which worsened over a period of time. The cough would be particularly bad at night, and often make him breathless. I could do nothing more than massage his back to give him some relief. We would take him to a government hospital for treatment frequently, but the medicines did not improve his condition. The doctors would ask us to buy medicines from outside, which we could not afford. He was eventually diagnosed with TB in the summer of 2011 on the basis of an X-Ray. The doctor prescribed medicines most of which were to be bought from the private market. We could not afford that, so
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treatment was discontinued. Some medicines were given from the hospital. After sometime, he was very sick again, so he was admitted in the hospital for 10 days. Another X-Ray was taken, and he was also given the BCG vaccine for a third time. Then he was put on ATT about a month ago. Only when I told the doctors repeatedly that we cannot afford to buy medicines, did they prescribe free medicines which we now get from the DOTS centre. Doctors have said that the medication will continue for 6 months. My husband earns around Rs 100 to Rs 150 ($2 or 3) per day, in which I have to run a family of seven. There is never enough to eat in the house, let alone milk or any other nutritive food for the children. We give him plain ‘daal roti’ to eat as we cannot afford anything better. Sometimes he complains of headache, otherwise he is okay. Another X-Ray has been taken recently, but we have not got the report. My husband had TB about 7 years ago. He had taken treatment for 6 months from a government hospital and was cured. But of late he has been coughing a lot, perhaps because of his smoking. He has not gone to the doctor, as he feels he has already completed the treatment of TB once, so he will not have it again. I do not know anything about TB, or how it is spread. I did not know that we get free medicine for TB. The doctors did not tell us anything about cough hygiene, or about cleanliness, or how to protect others from infection. No other member of the family
has been tested for TB, and no doctor has asked us to do so. The child sleeps with me on the same bed along with my other kids. The cough increases at night and/or when he cries. When he was admitted in the hospital, he had improved. Sometimes he complains of headache, but otherwise he is okay. (When I met the child, he had had a severe bout of cough, and he was coughing very close to his 3 year old sister). We were not counselled about any infection control measures at the DOTS centre." If this is the situation in a metro city, one can well imagine what the situation would be in rural and remote areas. It may sound politically correct to cry hoarse in unison that we want a TB Free World by 2015, but merely chanting slogans are not going to make any difference in the lives of people like Ramdulari and her kids. One has to see what can be improved in the existing setup. Only if the much publicised maternal and child health programmes of the government could reach these unreached populations; only if women could be made aware and counselled about family planning, exclusive breast feeding and basic health/hygiene measures; only if the healthcare services were more receptive to the needs of the common people; only if there was prompt diagnosis of TB and better contact tracing; only if. . . . The list may seem endless, yet it is achievable without any extra resources. Only if there is more competency and accountability in our work, instead of a 'couldn't care less attitude', a lot can be achieved in the field of controlling TB.
Ramdulari, mother of the child with TB, is the charming, but uneducated, hapless wife, who blames it all on her fate, waiting silently for some miracle to happen to blow her misfortunes away. She has resigned herself to a life where each day’s survival is an ordeal, and where hope has given way to mute resignation. She no longer resents being beaten/ill-treated by her alcoholic husband every day. Though convinced of the merits of a small family, she is scared of undergoing tubectomy, but is very sure that she will not beget another child. Her child had received BCG vaccination thrice… 13 | H e a r i n g t h e u n h e a r d v o i c e s : S a v i n g c h i l d r e n f r o m T B
PART - I
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Controlling Adult TB Will Prevent Childhood TB Children are innocent victims of tuberculosis (which in Hindi is called Kshaya Rog—a disease which wastes away the body). According to the WHO over 250,000 children fall prey to the disease and 100,000 of them die every year from TB, for no fault of theirs. They can only blame their infected parents and elders, who inadvertently pass on the germs of TB to them. A majority of the children get TB disease from a parent or a close relative. Adults infected with TB become potential transmitters of the disease to children. Unless we can diagnose and successfully treat the parent, we will fail to diagnose and treat the child. It is a one way transmission of the disease from adults to children, as children with TB usually do not infect the adults. Once an adult is diagnosed with TB then it is the responsibility of the health centre and of the community to ensure that all the members in the household of the patient, especially children, are screened for TB and started on chemo prophylaxis. Diagnosing and treating TB in adults, will not only cure them, but also prevent them from becoming carriers of the disease in children.
Experts’ Speak: Professor Surya Kant, Head of the Pulmonary Medicine Department, Chhatrapati Shahuji Maharaj Medical University: We have a large number of adult TB infections that can potentially be transmitted to children. So all adult TB cases must be treated effectively and priority should be given to those whose sputum is positive for Acid Fast Bacilli test. If we can intervene in early diagnosing and successfully treating adult TB then a
secondary outcome will be to effectively control childhood TB. More effectively we cure the adult TB more effectively we will prevent the childhood TB. Dr Somya Swaminathan, MD in Pediatric TB, and a Scientist at the National Institute for research in Tuberculosis (ICMR): Pediatric TB is difficult to control, because the infection spreads through the air borne route, and children get it from adults. So the only way to prevent is to tackle adult TB more seriously. Contact to contact TB testing must be done. All family members of a TB patient, especially children, should be tested, and started on chemo prophylaxis. That way we can reduce the burden of pediatric TB. Dr Daisy Dharmaraj, Associate Professor Department of Community Medicine ACS Medical College Director TEST Foundation: Screening the communities for pulmonary TB and active case findings are crucial to reduce the infection in children. Regular medical camps are essential, especially in places of high prevalence. Claire Crepeau, a Pediatric TB Nurse at McGill University, Canada: Children are the reservoir of TB for the future, if not treated timely. They should not be forgotten, especially in screening. So we must strive to manage adult TB properly if we are to decrease childhood TB and also prevent MDR TB. Dr Alex Govender of South Africa: Get back to basics – as soon as someone is identified with TB, immediately do contact tracing and consider prophylactic treatment in children.
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Dr Manoon Leechawengwong, DrugResistant Tuberculosis Research Fund,Thailand: Adults in the family with active TB should be diagnosed and treated properly as soon as possible. They must adhere to the TB medications and strictly follow the doctor's instructions. Dr Muherman Harun of Indonesia: If we only can persistently treat and diligently cure all of our TB patients who are infectious, eventually, there will be no more children getting infected.
Patientsâ€™ testimony Hara Mihalea narrates the story of a 36 year old mother of three children (one of them an infant) who was referred to a DOTS centre with all the symptoms of pulmonary TB. She went to the health centre thrice, but was sent back every time, sicker than before, with a bag of antibiotics and vitamins, but no TB treatment. She said she was getting worse by the minute and no one could help her. She said she wanted to go back to the health centre but they didn't have any more money and no transportation. The end of the story is that the woman did have TB and the last we heard was that the district officer was trying to get the children tested. This delay in diagnosis and/or treatment is a very common happening, especially in developing High Burden TB countries.
The father of a 6 year old (who is currently undergoing treatment for pulmonary TB) is an ex TB patient and a confirmed smoker and alcoholic. He completed his 6 months treatment some years ago, but has started coughing again. None of his family members were asked by the DOTS centre to get tested. Similarly, no family member of a 14 year old TB patient (undergoing treatment at DOTS centre) has been asked to get tested. There are numerous other examples where no contact tracing/testing is done even in the government setup. Both these cases are of urban slum dwellers in a capital city of India. One wonders what the situation would be in villages and small towns.
Recommendations According to the International Union Against Tuberculosis and Lung Disease (The Union), TB case-finding efforts should target children under 5 years of age living in a household with a sputum-smear positive adult. If the children are well, they should receive isoniazid preventive treatment (IPT) to help prevent their developing active TB disease. If they are not well, TB treatment should be considered and a clinical examination is recommended.
Paediatric TB is difficult to control, because the infection spreads through the air borne route, and children get it from adults. So the only way to prevent is to tackle adult TB more seriously - Dr Somya Swaminathan
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Infection control at Household Level to Prevent Childhood TB Childhood TB is difficult to control, because the infection is air borne, and the only way to prevent it is to adopt ways and means to control the spread of infection. An estimated one million children below 14 years of age will need treatment for tuberculosis this year. This represents approximately 10–15% of the world’s 9 million cases estimated by the WHO Global TB Control Report 2011. However, childhood TB is widely under-reported and can represent as much as 40% of the TB caseload in some TB high burden settings. Once infected with TB, infants and young children are at greater risk than adults for developing active TB disease. According to Lucica Ditiu, Executive Secretary of the Stop TB Partnership - Some 10 million children have been orphaned by the death of a parent from tuberculosis. It is unconscionable that in the 21st century any child should die from TB – a curable illness. This year’s World TB Day theme, Stop TB in my lifetime, draws attention to TB’s devastating impact on children and also the vision that today’s youngsters will live to see a world free of TB. It is widely believed that practicing basic infection control measures at the family and community level would go a long way in trying to achieve the goal of zero new infections in children, and protecting them from the scourge of TB. Children living in poor circumstances, in very crowded houses with bad ventilation and increased indoor air pollution, due to tobacco and cook stove smoke, become easy targets for
the TB bacterium. A congested neighbourhood with poor refuse management and improper drainage only adds to their vulnerability. Cough hygiene is very important, especially for those who are AFB sputum positive. They must cover their mouth with cotton or mask while coughing. Also, spitting on the roads and defecating in the open –a very common practice in countries like India - helps in the spread of the tuberculosis germs.
Experts Speak: Dr Anne Detjen, Technical Consultant, at the International Union Against Tuberculosis and Lung Disease (The Union): The main reason for children becoming sick with TB is poverty. Children living in poor circumstances, in very crowded houses with bad ventilation/improper air flow, and increased air pollution due to use of bio fuels become easy targets for the TB bacterium. Parents have to be informed by the doctor that TB treatment has to be taken for the entire period of six months, even though the patient may start feeling better after a while. Because then it would come back with a vengeance. Patients are partners and have the right to information, education and knowledge. The main thing is to raise awareness at community level. Professor (Dr) Surya Kant, Head of the Pulmonary Medicine Department, Chhatrapati Shahuji Maharaj Medical University: At the household level we can do a lot to reduce risk of TB – stopping passive smoking is one of them. Exposure to biomass or cook-stove smoke is also a risk
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factor for developing active TB disease. In rural areas many people still use biomass fuel for cooking, and exposure of children to cook-stove smoke can up their TB risk. Practice of using biomass fuel should be replaced by other energy options which are not detrimental for one’s health or that of the society. Overcrowding is another risk factor for spread of TB. Children living in urban slums where dwellings house a large number of people in small space can be at higher risk of TB. One of the fallouts of urbanization is construction of flats or apartments where often adequate sunlight is not coming in and proper ventilation is not there. Sunlight exposure inside the house and proper ventilation are very important factors in terms of reducing the risk of getting active TB disease, as a daily 5 minutes exposure to sunlight kills the Mycobacterium tuberculosis, even the drug resistant forms of bacilli. Chibuike Amaechi of The Good Neighbour Lagos, Nigeria: One of the causes of Childhood TB is congested and unhygienic residence, poor refuse management and dirty drainage in the neighbourhood and community. Dr Manoon Leechawengwong, M.D. DrugResistant Tuberculosis Research Fund, Thailand: Adults in the family with active TB should practice infection control by wearing mask as long as they continue to cough and try to stay away from kids in the family. Dr Vijaykumar Edward, Director – Health & HIV/AIDS, World Vision India: Poverty, overcrowding in houses, particularly small houses with poor ventilation with proximity to an index adult case, are well known factors. This would also call for people in governance to see the link between poverty and overcrowding, leading to poor ventilation and spread of air borne diseases like TB. We should not be found in a situation where we are pouring all our efforts and funds into diagnostics,
research, treatment and care, while ignoring the silent spread of TB through fine droplets in closed rooms where the poor of this world huddle together. Samuel Misoi, MPH Head: Prevention & Health Promotion, Division of Leprosy, TB and Lung Disease Ministry of Public Health & Sanitation, Nairobi, Kenya: To get zero new infection in children requires the effort of both the community and healthcare workers, and practicing infection prevention and control in the healthcare and community settings are important to achieving the goal. The issues of public health education on cough hygiene, good nutrition, improved housing/ good ventilation and lighting need to be enhanced.
Patients’ testimony At the inaugural lecture of the 42nd Union World Conference on Lung Health, organised by the International Union Against Tuberculosis And Lung Disease (The Union), in October 2011, Mikkel Vestergaard Frandsen, showed a poignant video clip of a 14 year old girl who had suffered and died of TB in her poor, smoke ridden home in a Kenyan village last year. The video was a telling but true commentary on the polluted and unhygienic environments that exist in most houses of urban slums and villages of the developing world, making them fertile grounds for TB germs, and exposing their children to this life threatening disease. Hara Mihalea narrates the story of a 36 year old mother of three children (one of them an infant) who was put on TB treatment a very long time after she was diagnosed with pulmonary TB. Meanwhile she stayed in close proximity with her children, breast feeding the youngest one with glassy eyes and face flushed with fever. Shobha Shukla shares the stories of children (aged 6 to 14 years) living with TB
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in the urban slums of the city of Lucknow— the capital of Uttar Pradesh. Their poverty, coupled with a total lack of knowledge about the factors responsible for the spread of TB, made a mockery of the much touted DOTS programme. None of the households either had any knowledge of basic hygiene and infection control methods, nor were they counselled by the healthcare personnel. The children were currently under treatment at DOTS Centres, but most of them were malnourished and living under very unhygienic conditions. They were all living in poorly ventilated rooms breathing air full of the smoke emanating from cook stoves, as well as from the bidis/cigarettes smoked by the elder male members of the household. They were coughing very close
to their siblings and eating out of the same plate and sharing the same bed. The general awareness level about TB is found to be very poor. None of the semiliterate households surveyed in Lucknow knew how it spreads, how it can be diagnosed and treated and what can they do to reduce the burden of TB. As it is an air borne infection, anybody can get it, but poor nutrition makes one more susceptible to it. We must incorporate nutrition and education program in the primary health care system, as primary care is very critical for overall health of the child. We also need to use community volunteers, social mobilization, and selfhelp groups to motivate patients to complete TB treatment and not leave it in between.
“Some 10 million children have been orphaned by the death of a parent from tuberculosis. It is unconscionable that in the 21st century any child should die from TB – a curable illness” - Dr Lucica Ditiu, Executive Secretary of the Stop TB Partnership -
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Infection control in healthcare settings
Tuberculosis is a disease known to have existed since thousands of years. In Hindi it is known as in ‘Kshay (decay) rog (disease)’—a disease which decays the body, as it is characterized by prolonged fever, weakness and wasting away of the body. In Ayurveda (ancient Indian medical texts), much before the advent of antibiotics, the treatment prescribed for TB patients comprised of fresh air, good nutrition and good nursing care. A similar worldwide movement for TB treatment began in the 19th century—the sanatoria treatment—which continued till even after the first antibiotic treatment was
discovered in 1940s. Sanatoria were akin to health resorts—a combination of a hotel and a hospital. The basic components of sanatoria treatment remained the same: sunlight, fresh air, good nutrition, mild exercise and good nursing care in a pollution free atmosphere. It is doubtful whether the sanatoria improved survival of the patients but it might have reduced the spread of tuberculosis in the community by removing infectious patients by reducing transmission. The same dictum holds good today—prevent TB infection from spreading
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by putting in place good infection control methods. Hospitals and other healthcare providing facilities often become important sources of transmission of TB bacteria due to poor infection control measures. It should indeed be mandatory for all hospitals to implement strict infection control measures in order to ensure that they provide effective standard treatments which are not marred by unhygienic conditions. Hospitals are our modern sanatoria where modern medical treatment should be given in clean and pollution free surroundings. This is essential for effective management of all diseases. One often comes across the word ‘hospital- infection’ these days and many a deaths are attributed to it. Cleanliness and proper ventilation of hospital wards becomes all the more important to control the spread of air borne infectious diseases like tuberculosis. All hospital buildings must have proper and cross ventilation mechanisms in all their wards, so that fresh air is circulated. Even air conditioned rooms should be designed in a way to allow for fresh air to enter. Then again, dark and dingy rooms are resting places for many a bacteria. Sunlight has the power to kill germs—even TB germs. So there should be enough sunlight streaming in all wards. Cough and spit hygiene should be practiced by all—hospital staff as well as patients and their visitors. We Indians have scant regard for coughing, spitting and sneezing in public places. These unhealthy habits should be strictly prohibited, at least inside the hospital campus. Proper sputum disposal should be done. Every patient who is AFB sputum positive should be counselled to use a mask, and cover the mouth with a handkerchief while coughing.
Proper refuse and hospital waste management is another area in which most hospitals and private nursing homes are found lacking. It is not uncommon in India to see dumps of hospital waste just outside the premises, which become breeding grounds for deadly bacteria. Hospital authorities must ensure that high standards of hygiene and sanitation are maintained not only inside their premises but in the immediate neighbouring surroundings also. Poor refuse management, indoor air pollution and dirty drainage often make hospitals infection spreaders rather than medical care providers. Professor (Dr) Surya Kant, Head of the Pulmonary Medicine Department, Chhatrapati Shahuji Maharaj Medical University cautions about another unhealthy social practice of children accompanying their elders to hospitals. He strongly believes that, “All hospitals should be instructed to convey to their patients that whenever they visit the hospital children shouldn’t accompany them unless needed – because hospitals are a very important source of spreading infections.” Children, with their still developing immune systems, are more likely to catch infections abounding in the surroundings, thus becoming easy preys of TB. This is all the more true in case of under nourished and weak children. So, while the general public is responsible for maintaining hygiene at the household and community level, the healthcare providers have to set examples of high quality standards of infection control within their own premises, to prevent patients from falling from the frying pan into the fire.
“All hospitals should be instructed to convey to their patients that whenever they visit the hospital children shouldn’t accompany them unless needed – because hospitals are a very important source of spreading infections” -
Professor (Dr) Surya Kant, Head, Pulmonary Medicine Dept, CSMMU
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TB Germs Thrive On Poor Nutrition TB has been with us since times immemorial. In ancient India it was called Rajrog or the Kingâ€™s Disease. A benevolent king would dole out gold coins to the poor, which raised their economic status, leading to improvement in their nutritional standards. This lead to a decrease in the number of new infections of TB, and better recovery of those already infected. If he was uncaring towards his people, the undernourished poor would find it difficult to avoid the curse of TB and inadvertently become victims of it. So, rightly or wrongly, it was thought that the king controlled the disease. However, one thing is crystal clearâ€”it has always been an accepted fact that an undernourished body is an open invitation to the germs of tuberculosis, as well as other diseases. This is especially true in case of children as poor nourishment weakens their immune system, making them less equipped to fight off the disease, and thus more vulnerable to it.
Hence, addressing their nutrition needs is of utmost importance.
Malnourishment remains an important risk factor to contract TB, especially in children. Fifty percent of the children in the developing countries go without meals. According to UNICEF, malnutrition is more common in India than in Sub-Saharan Africa, with one in every three malnourished children in the world living in India. The country boasted of having 57 billionaires last year but does not have enough money to feed the impoverished kids. In fact, around 46 % of all children below the age of three are too small for their age, 47 % are underweight and at least 16 % are wasted. The growth of almost 60 % is stunted, a result of inadequate nutrition for the mother during pregnancy and the child in its early years.
Professor (Dr) Surya Kant, Head of the Pulmonary Medicine Department, Chhatrapati Shahuji Maharaj Medical University: Malnutrition is the single strongest risk factor for childhood or primary TB in India where about 49% of the children between 0-5 years of age are malnourished. Tuberculosis occurs as a result of interaction between Mycobacterium tuberculosis load and the bodyâ€™s resistance or immunity. Body resistance or immunity is directly related to nutrition. That is why malnutrition is a very important risk factor in development of active TB disease in children. Also TB is no longer a disease of only those coming from lower socio-economic backgrounds. The fast food culture of modern urban
Experts Speak: Hara Mihalea, PATH: TB is a poverty disease, half of the children in the developing countries go without meals, and malnutrition makes them even more vulnerable to TB. Addressing the nutrition needs is of outmost importance. Dr Somya Swaminathan, MD in Pediatric TB, and a Scientist at the National Institute for research in Tuberculosis (ICMR): The most important risk factor in children is malnutrition, as poor nutrition makes one more susceptible to it. Dr ST Wali, Consultant Pediatrician, India: Improving nutritional status is an extremely important intervention not only in diseasefree population including children but also in patients on ATT.
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societies is basically decreasing the body immunity of even well fed children, and so nowadays it is not uncommon to find TB targeting the children of affluent families who are increasingly opting out for fast food. Fast/junk food causes free radical injury thereby decreasing the body’s immunity and making the child prone to infections such as TB. Dr Lalji Verma, of India: Apart from medicine driven initiatives, there are many other aspects one needs to consider for prevention of TB. We all know the importance of healthy and nourishing food, and as long as we have millions of impoverished children in the world, it may be difficult to accomplish effective prevention.
Patients’ testimony India is a paradox where under nourished children co- exist with over nourished ones. Both come under the category of being malnourished. One of the findings of The Hunger and Malnutrition Report, based on a recent survey in India was that under nourished children in India were rarely hungry; they were merely badly fed on diets consisting largely of carbohydrates, due to widespread ignorance about nutrition. The patients living in urban slums were generally undernourished due to poverty as well as ignorance about a well-balanced diet. Parents of children living with TB complained that their kids preferred to eat outside food rather than wholesome meals cooked at home. In some cases there was no money to buy milk and fruits for the child, although there was enough for the father to squander on tobacco and alcohol. Nursing mothers were found to often discard colostrum –the high-protein form of milk produced just prior to birth—which is again so vital for the baby’s health. In most cases the child had not been exclusive
breast fed for the first six months, for a variety of socio-economic reasons, making her more prone to infections. Undernourished mothers also were seen to have produced weak babies, as in the case of Jugalkishore, a 6 year old child suffering from TB. Professor Surya Kant mentions that some of his young patients come from affluent families. He attributes their developing TB to the fast/ junk food culture which has overpowered the food habits of modern urban societies, especially the children. Fast food causes free radical injury and thereby decreases the body’s immunity making the child prone to infections like TB. So it is not always only poverty, but also lack of proper knowledge about a balanced diet that results in malnutrition and makes the child an easy prey to diseases like tuberculosis.
Recommendations Governments are to be held accountable for the health and wellbeing of their populations, especially the children. Policy makers and programme implementers will have to understand the linkages between education, health, and hygiene, with a view to improve the nutritional status of our children. TB education should be incorporated into post natal care for nursing mothers, and care givers of children below 5 years of age. Maternal and child health programmes should be comprehensive and should educate mothers about the importance of exclusive breastfeeding during the first six months for strengthening the immune system, and about what constitutes a healthy diet. One of the findings of The Hunger and Malnutrition Report, based on a recent survey in India was that malnourished children in India were rarely hungry; they were merely badly fed on diets consisting largely of carbohydrates, due to
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widespread ignorance about nutrition among Indian parents. Nursing mothers often discard colostrum –the high-protein
form of milk produced just prior to birth— which is again so vital for the baby’s health.
“Malnutrition is the single strongest risk factor for childhood or primary TB in India where about 49% of the children between 0-5 years of age are malnourished” Professor (Dr) Surya Kant, Head of the Pulmonary Medicine Department, CSMMU and President, Indian Chest Society (North Zone)
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Safe and effective vaccines can be the game changer in TB prevention and control New
drug regimens and better, more accurate diagnostic methods are urgently needed to control tuberculosis. However, mathematical modelling studies show that tuberculosis can only be fully eliminated with the help of new vaccines. Currently there is only one vaccine against tuberculosis available worldwide: Bacille Calmette-GuĂŠrin (BCG). This vaccine, used since 1921, can protect children from severe forms of tuberculosis. However, BCG has little to no efficacy in preventing lung TB, the most common and most infectious form of tuberculosis, and its protection seems to fade during adolescence. Moreover, there are serious safety concerns regarding the use of BCG in HIV infected newborns.
keep following current trajectory, hardly anything happens. The global plan could accomplish a 6% decrease, but not the needed 16%
This figure shows the impact of vaccination in a mathematical model. The black line above shows that the incidence of tuberculosis would remain similar over the next 40 years: around 200 cases per 100,000 inhabitants.
If children were vaccinated at birth (neonatal vaccination) with a new efficacious vaccine which were to replace BCG (= pre-exposure vaccine), the reduction would be substantial but far from enough to eliminate tuberculosis by 2050 (red line, 2nd from above).
More effective, safe vaccines to improve or replace BCG are urgently needed as tuberculosis keeps taking its toll. In order to eliminate TB by 2050 we need to reduce incidence by 16% per year. If we
The massive use of post-exposure vaccines (blue line, 3rd from above) would generate a more important reduction in the number of cases but still not enough to eliminate tuberculosis by 2050. Post-exposure vaccines are vaccines which prevent latently infected persons or carriers from
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Massive use of pre-exposure vaccines (green line, 4th from above) would have a very important effect. Pre-exposure vaccines must be administered before exposure to tuberculosis. Both boost and replacement vaccines belong to this category. Boosting vaccines are administered to persons who have received an earlier BCG or its replacement vaccine. Massive use of both pre- and post-exposure vaccines would have the biggest impact (violet line, 5th from above). During the latest world vaccine symposium on tuberculosis vaccines in Tallinn , the scientific community confirmed the results of this model and claimed again that massive use of both pre- and post-exposure vaccines is needed to eliminate tuberculosis. This analysis enabled the ‘working group on economics and target product profiles of Stop TB partnership working group on TB vaccines’ to conclude that the world should develop at least 8 vaccines to satisfy worldwide mass vaccination with pre- and post-exposure vaccines . Vaccines – generally accepted as and proven to be both a very efficient and costeffective way of preventing infectious diseases – can make the difference. Improved diagnostics and more efficient drug therapies are needed now, they would save tens of millions of lives. However, we also need to look at the future, different
types of new vaccines could prevent infection altogether, block existing latent infections from developing into active disease and will also be especially crucial in combating multidrug-resistant tuberculosis (MDR-TB) and extensively drug resistant tuberculosis (XDR-TB), forms of TB that are expensive and extremely difficult or virtually impossible to treat.
Jojanneke Nieuwenhuis TuBerculosis Vaccine Initiative (TBVI)
Experts’ speak: Professor (Dr) Surya Kant, Head, Pulmonary Medicine Dept, CSMMU: BCG vaccine is part of universal immunization programme of India. I believe it should be continued because meta-analysis has shown that BCG vaccine cannot prevent the TB disease but can definitely reduce the seriousness of the disease and reduce mortality. So if at all the child develops TB it will not be of serious type and if proper care is provided timely TB shouldn’t be lethal for her in all probabilities. Dr Sudhakar Singh, Specialist in Paediatric Medicine at Nelson Hospital of Paediatrics and Neonatal Medicine, Lucknow: There is also a misconception that BCG vaccination prevents all forms of TB, which is not true. However after getting the BCG vaccination even if the child gets TB, it is localised pulmonary or intestinal TB, and not of the disseminated form. There is a definite need to spread awareness in the masses. We should be aware that any person sitting near us, who is coughing, may have TB.
BCG has little to no efficacy in preventing lung TB, the most common and most infectious form of tuberculosis, and its protection seems to fade during adolescence. Moreover, there are serious safety concerns regarding the use of BCG in HIV infected newborns. - Jojanneke Nieuwenhuis, TBVI 26 | H e a r i n g t h e u n h e a r d v o i c e s : S a v i n g c h i l d r e n f r o m T B
Importance of Exclusive Breastfeeding in combating TB Childhood TB occurs due to bacterial infection, which attack when the child’s still-developing defence system is weakened by malnutrition, air pollution, co infections with HIV/AIDS, and low birth weight. Mother’s milk is the ideal nutritionally perfect food for newborns and infants. It is like nectar for the infant and is aptly called the first vaccine that can be given to the child. Apart from the unique ability to nourish the baby, it is also packed with several antibodies (immune globulins) that provide lifelong protection against several illnesses. It is safe, easy to digest, is readily available and very affordable. During the initial post natal phase, breast milk is in the form of colostrums which has antibiotic like properties and lactoferins, which give the child an integral immunity against various diseases, including tuberculosis. Breast milk is also rich in proteins, has enzymatic activity that prevents the growth of bacteria and viruses, and fulfils all the nutritional requirements of the new born for the first six months. Exclusive breastfeeding implies the concept of feeding the child only with mother's milk from first hour of birth up to a minimum of six months, without any other supplement like water, honey or any top feed. Exclusive Breastfeeding during the first six months of life is crucial in combating several diseases, including tuberculosis, by supplying the infant with nutrients and immunoglobulin antibodies, which provide immunity to the respiratory tract, and contribute significantly to the development of a healthy immune system.
Experts’ Speak Dr Kumud Anup, Paediatrician, Lucknow: Mother’s milk is the best milk. It not only prevents infectious diseases but also helps in the physical development of the child. It also increases child’s immunity and body’s resistance for other diseases. Hence mother’s milk is complete nutrition for the child during the first six months. There is no need to give any other food supplement to the child. Dr. Neelam Singh, Consultant Obstetrician and Gynaecologist and Chief Functionary of Vatsalya Resource Centre on Health: Exclusive breastfeeding implies that the child should be only, and only, be on mother’s milk for six months, and not given anything else like water, gripe water or honey. Breast milk contains a number of immune globulins which increase the child’s resistance to a wide range of diseases especially pneumonia and diarrhoea. Apart from increased immunity, breast fed infants also have better mental development. Dr SN Rastogi, senior Paediatrician: Exclusive breast feed is the best feed that can be given to a child. Dr SK Sehta, Consultant Paediatrician and Neonatologist, Lucknow: breast milk has certain hormones (which are lacking in formula, cow/ buffalo milk) which increase the child’s resistance to a host of diseases. If the child is being exclusively breastfed for the first six months, the chances of a large number of infectious diseases is drastically reduced. A number of drawbacks
are associated with formula milk and bottle feeding. The level of hygiene demanded by bottle-feeding is very hard to meet here. This predisposes the child to infection. They also tend to dilute the milk which leads to undernourishment of the child. Dr Amita Pandey, Associate Professor of Obstetrics and Gynaecology, Chhatrapati Shahuji Maharaj Medical University Lucknow: I work in a government hospital and the only feeding modality that is advocated and patronized in our setup is exclusive breast feeding (no water, no sugar, no gripe water, no honey, and no coconut water) during the first 6 months of life. We let the mother start feeding the baby as early as within 10 minutes of delivery. Poor mothers adhere more strictly to breast feeding than those from the higher socio economic status. Girls from well off families generally have problems in initiating and maintaining breast feeding. Dr Ajay Misra, senior Paediatrician and Managing Director, Nelson Hospital for Paediatric and Neonatal Medicine, Aliganj, Lucknow: Though mothers are aware of the benefits of exclusive breast feeding, they are very conscious about their beauty and physical appearance and hence do not want to breast feed. In villages, mothers prefer to feed the infants on cow milk, as they have many children.
Patients’ Testimony Despite the medical fraternity vouching for the efficacy of mother’s milk, less than 40% of infants below six months of age are exclusively breastfed. In fact only 15% to
20% of the mothers coming to Dr Neelam Singh were following this regimen strictly. Even those who said that they only breast fed their infant, discounted the water, honey, gripe water etc, which they were commonly giving. Some said that they did not produce enough milk at the time of giving birth, so they could not breast feed the child. Those from the economically weaker section of society take it as sign of upward mobility to bottle feed the child, in imitation of their employers. Nonetheless, even when absolutely unavoidable, bottle feeding requires very strict hygiene control which is difficult to meet.
WHO Recommendations The World Health Organization (WHO) recommends exclusive breastfeeding as the sole source of food until an infant is six months of age, and thence a combination of it with complementary foods till two years of age. Other recommendations There should be more awareness programmes at the community and hospital levels for young girls to understand the importance of exclusive breast feeding. Doctors too need to inform them about the health benefits of breast feed for the child. Expectant mothers need to remember that their milk is one of the most important tools in the armoury of the baby to prevent several diseases, including tuberculosis, and that contrary to popular myths, the baby needs mother’s milk, and nothing but mother’s milk during the first six months of life.
Exclusive Breastfeeding during the first six months of life is crucial in combating several diseases, including tuberculosis, by supplying the infant with nutrients and immunoglobulin antibodies, which provide immunity to the respiratory tract, and contribute significantly to the development of a healthy immune system. 28 | H e a r i n g t h e u n h e a r d v o i c e s : S a v i n g c h i l d r e n f r o m T B
Tobacco control can help reduce new TB infections and deaths among children Effective tobacco control can certainly help reduce the new TB infections and deaths among children. Exposure to secondhand tobacco smoke is an important risk factor for developing TB disease and worsens treatment outcomes. As it is clear that unless we effectively control TB in adults, it is impossible to control childhood TB, it gives all the more thrust to implement tobacco control measures effectively so that not only adults can be prevented from tobacco related diseases, disabilities and deaths – but also children are not exposed to secondhand tobacco smoke – which puts them at a heightened risk of TB and other such infections. “Up to one in five TB (tuberculosis) deaths could be avoided if TB patients were not smokers,” had said Dr Nils Billo, Executive Director of the International Union Against Tuberculosis and Lung Disease (The Union), to CNS at the 2008 Union World Conference on Lung Health. Smoking is also associated with recurrent TB and people with the disease who smoke have a higher risk of mortality than non-smokers with TB. Tobacco smoking, TB, HIV and chronic obstructive pulmonary disease (COPD) are all burgeoning problems in resource poor settings. The evidence of their potentially devastating effects on global public health is increasing and they require a coordinated approach for control. All of these are perpetuated by poverty and inadequate resources, and their control and management require coordinated approach
between different stakeholders.
Statistically, there is 1 TB-related death that takes place every 18 seconds, 1 HIV death every 16 seconds and 1 smokingrelated death every 13 seconds. "Smokers have two fold higher risk of developing active TB disease" had said Dr Madhukar Pai from McGill University and Montreal Chest Institute in Canada to CNS in the Union World Conference on Lung Health in Cancun, Mexico (2009). Dr Pai was referring to three meta-analysis studies from 2007/2008. "Tobacco smokers have 2 times more risk of dying of TB" added Dr Pai, referring to the data from India. India has enormous tobacco use and COPD rates, and also the highest TB burden in the world. Tobacco smoke increases the risk of pneumonia, influenza, menningococcal meningitis, among others. Evidence is accumulating that smoking is a risk factor for TB. At least 15 more studies have been published since the three major metaanalyses in 2007/2008. All studies report a positive association between tuberculosis and tobacco smoking. Studies also show that current male smokers have a higher risk for active TB disease than former smokers. In a study conducted in India, 900 non-medical staff monitored 1.1 million people for 3 years for cause of death taking place in this population. TB was the biggest cause of death reported in this study in
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India, and 66% of those who died of TB during the study, were active smokers.
support services, or to such services as antenatal or well-baby care.â€?
The risk to develop active TB disease is higher when tobacco smoking is combined with alcohol.
Dr Donald Enarson from The Union had stressed in the Cancun conference to CNS that tobacco smoking cessation is an important part of the comprehensive tobacco control programme, and not the only part. All components of the comprehensive tobacco control measures should be implemented for improving public health outcomes. Dr Enarson was referring to MPOWER report from Tobacco Free Initiative (TFI) of WHO which outlines the MPOWER package, a set of six key tobacco control measures that reflect and build on the WHO Framework Convention on Tobacco Control (FCTC, global tobacco treaty). Another delegates remarked that MPOWER is in line with the global tobacco treaty (WHO FCTC) and we should be demanding implementation of the treaty to which governments have committed to enforce. The WHO FCTC is the first public health and corporate accountability treaty. Comprehensive tobacco control programmes can yield major public health outcomes, as 30% of male TB patients die of tobacco smoking.
"Mortality rates, particularly from Asian countries suggest that there is an urgent need to target TB patients for smoking cessation interventions" had said Dr Pai. However he stressed that tobacco cessation should be encouraged regardless in all disciplines of medicine because of proven public health outcomes. The second edition of the International Standards of Tuberculosis Care (ISTC), which is an official component of the WHO Global Stop TB Strategy also mentions tobacco smoking cessation among other measures to improve TB treatment outcomes. The ISTC standard 17 says: "This plan should include assessment of and referrals for treatment of other illnesses with particular attention to those known to affect treatment outcome, for instance care for diabetes mellitus, drug and alcohol treatment programs, tobacco smoking cessation programs, and other psychosocial
As it is clear that unless we effectively control TB in adults, it is impossible to control childhood TB, it gives all the more thrust to implement tobacco control measures effectively so that not only adults can be prevented from tobacco related diseases, disabilities and deaths â€“ but also children are not exposed to secondhand tobacco smoke â€“ which puts them at a heightened risk of TB and other infections.
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IPT – will it save children with latent TB from active TB disease? “In Lesotho, Isoniazid Preventive Therapy (IPT) to prevent latent TB infection from becoming active TB disease, is not available for ordinary citizens but only for health workers. Those people who have latent TB infection have a right to protect themselves and access IPT services to prevent latent TB from becoming active TB disease. I consider these people have a right to get IPT. Everybody has a right to health, when it comes to TB prevention” said Maketekete Alfred Thotolo, Treatment Literacy & Advocacy Coordinator, Adventist Development and Relief Agency (ADRA), Lesotho, who also represents AIDS and Rights Alliance for Southern Africa (ARASA) to CNS at the 40th Union World Conference on Lung Health, Cancun, Mexico. The Global TB/HIV Working Group of the Stop TB Partnership has clearly stated that: IPT works, IPT is safe, and IPT works with ART or by itself. TB is a major cause of illness and death in people living with HIV, even in those taking antiretroviral therapy. TB could be prevented in millions of people infected with both HIV and TB through the use of IPT. IPT is an important intervention for preventing and reducing active TB disease in communities affected by HIV preventing active TB disease can prevent millions of people from being infected in the community and in health care services.
IPT is safe and effective and the treatment lasts for 6-9 months. It is only given to people who have confirmed latent TB infection (not to be given to those with active TB disease). Effective IPT treatment reduces the development of active TB disease in 40-60% of patients. Despite of the potential public health outcomes of using IPT effectively in high burden TB countries, and IPT being one of the key interventions recommended by WHO in 1998 to reduce the burden of TB in people living with HIV, the uptake of IPT has been very low. Clearly there is a need to mobilize TB-HIV affected communities and other stakeholders to integrate IPT as part of the package of health services. Integrating IPT services for TB prevention doesn't mean upping the cost at country level, possibly. A 2007 World Bank research report "The Economic Benefit of Global Investments in Tuberculosis Control" found that 22 countries with the world’s highest numbers of TB cases could earn significantly more than they spend on TB diagnosis and treatment if they signed onto a global plan to sharply reduce the numbers of TB-related deaths. Highly affected African countries could gain up to 9 times their investments in TB control. When the economic benefits of effective TB care and control are estimated to be greater than the cost, governments shouldn't delay improving TB responses by preventing TB in those who have latent TB effectively.
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Experts’ speak: Dr Aleyamma Thomas, TRC, Chennai, India: I recommend that India should strictly implement IPT to control childhood TB Dr ST Wali, Consultant Pediatrician and Programme Officer (Pediatric Care) – HIV, New Delhi: INH Prophylaxis with 10 mg/kg for 6 month is the revised IPT drug dosage protocol as recommended by the WHO very recently. This needs to be offered with reverse contact tracing. Contact definition for pediatric cases must be specifically followed in all cases. Dr Shanta Ghatak, India: Blanket IPT is hard to find an audience with. Professor (Dr) Surya Kant, Head, Pulmonary Medicine department, CSMMU: I don’t think IPT will work in a country like
India because 50% population is host to Mycobacterium tuberculosis. Anita Chan, Taiwan Centre for Disease Control: It's crucial to have prophylaxis and latent TB infection treatment to stop TB disease in closed contact children of index adult TB cases first Dr Manoon Leechawengwong, DrugResistant Tuberculosis Research Fund, Thailand: Children of the family with active TB should be seen by the pediatricians and should have tuberculin test to find out whether they have been infected recently. If the initial tuberculin test is negative, isoniazid should be given and tuberculin test should be repeated in 3 months. If the test remains negative, isoniazid can be discontinued. If the initial tuberculin test is positive chest x-ray should be done and isoniazid prevention therapy should be given for a total duration of 6-9 months once the active TB has been ruled out.
A 2007 World Bank research report "The Economic Benefit of Global Investments in Tuberculosis Control" found that 22 countries with the world’s highest numbers of TB cases could earn significantly more than they spend on TB diagnosis and treatment if they signed onto a global plan to sharply reduce the numbers of TBrelated deaths. Highly affected African countries could gain up to 9 times their investments in TB control. When the economic benefits of effective TB care and control are estimated to be greater than the cost, governments shouldn't delay improving TB responses by preventing TB in those who have latent TB effectively
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PART - II DIAGNOSTICS Most commonly used TB diagnostic tool, sputum microscopy, is more than 100 years old. It detects only half of the cases of TB in patients tested, and is particularly ineffective for diagnosing TB in people with HIV. First-line TB drugs are more than 40 years old and must be taken for 6-9 months. Rifampin, a cornerstone of current TB treatment, cannot be used concurrently with certain commonly-used antiretrovirals (ARVs). TB vaccine (BCG), which is more than 85 years old, provides some protection against severe forms of TB in children but is unreliable against pulmonary TB, which accounts for most of the worldwide disease burden. The BCG vaccine, is not recommended for infants known to be infected with HIV, due to increased risk of serious BCG-related complications. (Source: FIND)
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Challenges In Diagnosing TB In Children Childhood tuberculosis has been neglected for a long time and, in terms of the global policy the focus has been on adult tuberculosis. However, it is now being increasingly recognized as an issue that has to be tackled seriously. The problem of childhood tuberculosis is beset with challenges. Timely and correct diagnosis of TB in children is not easy and many of the common tools used in diagnosis of TB in adults, like sputum microscopy, do not work in children. Young children cannot produce sputum whose examination is the cornerstone of TB diagnosis, and TB in children is pauci-bacilliary: there is more of tissue damage, but less of bacteria. Hence it is more difficult to isolate and examine those bacteria. Another reason could be the shortage of laboratory facilities in India to do TB cultures. So, diagnosis has to rely on clinical evidence and X- Rays which can often lead to a lot of confusion. Also, presentation of the disease is less specific in children, and it is often confounded with other diseases. The symptoms of the common form of TB of lungs (pulmonary TB), are fever and cough, which overlap with the symptoms of many other common infections in children - viral, bacterial and upper respiratory tract infections, asthma and wheezing. This may lead to confusion in the mind of the parent as well as the doctor as to what type of fever and cough it is.
Expertsâ€™ Speak Dr Somya Swaminathan, MD in Pediatric TB, and Scientist at the National Institute for research in Tuberculosis (ICMR): TB symptoms in children can very often mimic
those of pneumonia, asthma or other bacterial/viral infections. Most often, parents bring the child to the doctor for repeated and persistent fever/ cough, or if the child is not gaining weight and not having a good appetite. The other common form of TB in children is the lymph node TB, in which case there may be an enlarged swelling in the neck or the armpit. Then there are serious forms of TB like TB meningitis, in young children specially. They may just be lethargic and have low grade fever, followed by headache and vomiting. But there is a lot of overlap with symptoms of other diseases. Once TB is suspected we need to do a chest X- Ray, and try to make a bacteriological diagnosisâ€”either by obtaining sputum in case of an older child, or by obtaining respiratory secretions in younger ones like a gastric lavage or induced sputum. If the X- Ray is suggestive of TB, then one should give a course of antibiotics for about 10 to 14 days. If the child still does not improve, only then can one consider TB as a likely diagnosis. Many doctors skip this step. They may, find a lesion in the X- Ray and start TB treatment. This is responsible for a lot of misdiagnosis and may also be dangerous for the child in the long. Dr ST Wali, Consultant Pediatrician, New Delhi: Unless there is a sputum positive case, we must not start anti-tuberculosis therapy [ATT] for Pulmonary Tuberculosis. In Extra-pulmonary TB cases too, the emphasis is on finding AFB positive specimen/granulomatous changes. We must not treat all the TB cases irrespective of smear positivity. It is a sure recipe for creating resistance.
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Paula Perdig達o, TB consultant, Mozambique: I cannot agree that we should only treat smear- positive pulmonary TB cases. Almost all cases of TB in children are paucibaciliary, so smear is negative, and also in TB/HIV patients only 40-50% cases are smear positive. If we treat only smear positive cases millions of patients will die. So it is a dangerous and bad clinical practice. The challenge is the smear negative cases and ETB. For this reason we urgently need a new a rapid, easy and cheap diagnostic test for TB that can be more sensitive than sputum smear test. Professor (Dr) Surya Kant, Head of the Pulmonary Medicine Department, Chhatrapati Shahuji Maharaj Medical University: The main challenge in early diagnosis of TB is the poor awareness regarding TB in the society. We have to educate the society about TB and health. Childhood TB or primary TB is entirely different in terms of management of postprimary or adulthood TB. Sputum for AFB which is supposed to be the gold standard for diagnosis of TB does not work for the diagnosis of TB in children. The second challenge is that chest X-ray is usually misleading in diagnosing TB in children. Any shadow in the X-ray of the child is considered as pulmonary TB, which is not true. Even the calcified shadow may not be TB. We have to educate the healthcare providers and the public at large that primary complex is not childhood TB. Primary complex is simply an end product of any infection by Mycobacterium tuberculosis at the end of eight weeks of infection, and it is not primary TB. There is a lot of confusion in our paediatric doctor fraternity/general physicians. The usual dictum is that any report with positive Mantoux test or radiology report of primary complex is considered as TB. Due
to this misdiagnosis of childhood TB we may in some cases miss out lymphoma, leukaemia, anaemia, simple non-reactive lymph adenopathy or reactive lymph adenopathy, etc. Also, in HIV negative children there is a 10 per cent lifetime risk of developing active TB disease if a child is exposed to TB bacilli.. In children living with HIV the risk might be up to 50 times higher. We need new rapid effective diagnostic tools especially for extra-pulmonary TB. Diagnostic tools such as PCR, Gene Xpert, are the possible future of diagnosing childhood TB. More hospitals and laboratories in India should have such molecular based diagnostic tools. Dr Shanta Ghatak, India: TB in the paediatric population is over diagnosed, based on Chest X-Rays, across all the institutions that cater to this unique and vulnerable segment of our society. It is another hard fact that all these children are put on ATTs Dr Muherman Harun, St.Carolus TB Program, Jakarta, Indonesia: 1. Children sometimes may have post primary /adulthood TB. Symptoms are few weeks cough, subfebrile, night sweat, chest pain and sometimes hemoptoe. Diagnosis is relatively simple Every doctor treating TB can easily recognize TB features on chest X-ray: infiltrates or patches usually in upper lung fields, sometimes with cavitation. If cavitation is present, sputum should easily reveal Acid fast bacilli (AFB). 2. Child may have miliary TB. After witnessing the miliary shadows in the lung(s) on chest X-ray, even once only, the doctor will remember this X-ray. 3. Child may have meningitis TB. Symptoms include longstanding headache, febrile and drowsiness, and neck or back stiffness. The Chest X-ray may be normal, or miliary TB may be present.
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Both military and meningitis TB are a rare occurrence after BCG. 4. Child may have primary TB which shows no symptoms. Chest X-ray may show enlarged hilar lymph glands. Unfortunately, increased broncho-vascular markings are often over diagnosed as enlarged hilar lymph glands. Despite misjudgement of a number of primary TB cases by doctors, millions of primary cases go unnoticed and get spontaneously cured. In some cases, if body resistance is low, the primary disease will develop into post primary TB and cannot be prevented by BCG. But in this case the diagnosis is relatively simple. After treatment, sputum AFB becomes negative and the disease causes no further infection. Sputum examination of AFB is most successful if lung/bronchial tissue is affected as in post primary TB. However, in miliary and meningitis TB, the bacilli are spread through the bloodstream and hence are usually not detectable in sputum. In primary TB, bacilli are spread through the lymphatic system and bloodstream. Therefore, AFB are usually absent in the sputum. This explains the difficulty to detect AFB in sputum. We never carried out the gastric lavage for AFB. The tuberculin test in under-fives is particularly useful in the diagnosis of TB, if BCG was not given. However, the higher the age of the patient, the lesser diagnostic value the tuberculin test will have. Also, the tuberculin test is no more a reliable diagnostic tool after BCG vaccination. The presence of a house-hold contact, who is expectorating TB bacilli, is an important factor, supporting the diagnosis of TB in children. The presence of lymphatic TB glands in the neck becomes very helpful in the diagnosis of pulmonary TB. After only a few weeks of anti-TB treatment, the swollen lymph
glands will soon reduce in size. This also supports the diagnosis of TB of the lung. (But there also are lymph glands in the neck of viral origin. If thoroughly examined, there will be many small children with enlarged lymph glands in the neck, which are not TB. These glands are usually not directly visible and do not need any treatment. As the child becomes older, the enlarged glands will disappear spontaneously. Dr Subbanna, Director, LEPRA India: The challenges of timely and correct Childhood TB diagnosis are due to two reasons: (i) Young children cannot produce sputum whose examination is the cornerstone of TB diagnosis, and (ii) TB in children is pauci-bacilliary: there is more of tissue damage, but less of bacteria. Hence it is more difficult to isolate and examine those bacteria. Another reason is the shortage of laboratory facilities in India to do TB cultures. So, diagnosis has to rely on clinical evidence and X- Rays which can often lead to a lot of confusion and mismanagement. Suggestion is that all paediatricians and treating physicians in government and private sectors should be provided with dissemination of information on (i) Childhood TB diagnosis and treatment protocols and (ii) all the household contacts, including children, of the adult TB diagnosed cases should be treated appropriately with chemo prophylaxis. Dr Charles Namisi, Uganda: A high index of suspicion of TB in a child is the key to early diagnosis of childhood TB. I have found the triad of History of contact with an adult with TB, Positive Mantoux test and Chest X Ray changes. The challenge is when there seems to be no history of contact with TB patient at household level, Mantoux test is quite expensive and interpretation of the Tuberculin Skin Test is tricky in an immune-
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suppressed child and chest x interpretation comes with experience.
Dr PS Sarma, Technical consultant RNTCP: To diagnose TB in children is a difficult job compared to adults. As per RNTCP guidelines Sputum examination for AFB is the first choice for diagnosis; but in children it is difficult to bring put sputum. But we can try induction methods. So, we are left with other diagnostic tolls - like Mantoux test and Chest X-Ray. History of Contact is also important apart from the clinical findings. Even when Sputum is negative, tubereculin test is not conclusive and X-ray does not give any positive finding, it is said that under the RNTCP, the paediatrician's diagnosis is honoured and treatment is initiated as per the weight band of the child. Dr Dinesh Chandra Pandey, Specialist in Paediatric Medicine at Nelson Hospital of Paediatrics and Neonatal Medicine, Lucknow: Diagnosis of TB is very challenging for the clinicians. There is no golden standard of diagnosis of TB. As far as signs and symptoms of TB are concerned, there is no exact classical presentation of the disease. It is often very difficult to differentiate a TB infection from other viral and bacterial diseases. We need better diagnostic tools. Dr Sudhakar Singh, Specialist in Paediatric Medicine at Nelson Hospital of Paediatrics and Neonatal Medicine, Lucknow: Tubercular infection has a very variable pattern of presentation, so it maybe misdiagnosed or undiagnosed. These unidentified cases continue to spread the infection until they are diagnosed. None of the currently available diagnostic tests are full proof. So a proper clinical assessment, based on experience and clever examination and history taking, is very important. If done well, it outdoes the efficacy of all tests. Many physicians who do not take history of the patient fail to
differentiate TB from other diseases thus leading to misdiagnosis. LRTI (lower respiratory tract infection) can easily be misdiagnosed with TB. I have seen an adult case having taken 3 courses of ATT but not responding. Ultimately he was diagnosed with LRTI and was treated successfully with just a 14 days course of Septran. Many cases of tuberculosis are treated by quacks and unqualified physicians. If a fever does not resolve they start giving ATT in an improper manner without any proper categorization and dosage. So tuberculosis resistance is emerging. Dr Abhishek Varma, Senior Consultant Pediatrician, Dr Ram Manohar Lohiya Combined Hospital, Lucknow: Children normally get primary complex. In primary TB there are very few symptoms. If the child complains of loss of appetite, is underweight/not gaining weight, does not interact with friends but loves to remain solitary, then we investigate, as chances of primary complex or tuberculosis are high in them. Proper investigations are very important. Many doctors diagnose primary TB if there is Hilar Shadow in the lungs. But in 99% cases, Hilar shadows may appear different from TB, and even if Hilar lymph nodes are enlarged it may not be TB. Unless there are other symptoms of appetite loss, weight loss, we should not give TB medicines for primary complex. ATT should not be started unless TB is confirmed on the basis of various tests done like X- Ray, PCR (polymerase chain reaction) test. It is very important that confirmed diagnosis be done before starting treatment as the treatment will last for at least 6 months and drugs are toxic. So if treatment is started without confirmation it is a waste of money, drugs and creates psychological problems too. TB in one child affects the entire family. Proper investigation is very important. There are problems in diagnosis as presentation of the disease in children is
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different from that in adults. Even if the child is not gaining weight, even if there is no cough, it could be TB. In children below 5 years of age, there is very little sputum
formed, so we cannot diagnose through sputum examination. But there are newer tests like PCR which are better, but they are costly.
Young children cannot produce sputum whose examination is the cornerstone of TB diagnosis, and TB in children is pauci-bacilliary: there is more of tissue damage, but less of bacteria. Hence it is more difficult to isolate and examine those bacteria. Another reason could be the shortage of laboratory facilities in India to do TB cultures. So, diagnosis has to rely on clinical evidence and X- Rays which can often lead to a lot of confusion
â€œTubercular infection has a very variable pattern of presentation, so it maybe misdiagnosed or undiagnosedâ€? Dr Sudhakar Singh, Specialist in Paediatric Medicine at Nelson Hospital of Paediatrics and Neonatal Medicine, Lucknow
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PART - III
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Treatment challenges in childhood tuberculosis A significant proportion - about 15% to 20% - of all tuberculosis (TB) occurs in children in India, where paediatric TB is a serious, but under-recognized and neglected public health problem. Treatment depends upon correct diagnosis, so once correct diagnosis is made, half the challenge is over. As TB can very often mimic pneumonia, bacterial/viral infections, it is often difficult to diagnose it correctly. Experts are unanimous that misdiagnosis should be avoided as it may be very dangerous for the child in the long run. Once treatment begins it is the duty of the healthcare providers, through proper counselling of parents, to ensure that treatment is not left in between and that all medical instructions regarding dosage, time of taking medicines and diet are adhered to. This is responsible for a lot of misdiagnosis and may also be dangerous for the child in the long.
Expertsâ€™ Speak Dr Somya Swaminathan, MD in Pediatric TB, and a Scientist at the National Institute for research in Tuberculosis (ICMR): Once TB is suspected we need to do a chest X- Ray, and wherever possible try to make a bacteriological diagnosis. If the X- Ray is suggestive of TB, then one should give a course of antibiotics, and watch the child for about 10 to 14 days. If the child still does not improve, only then can one consider TB as a likely diagnosis. Many doctors skip this step. They may, find a lesion in the X- Ray and start TB treatment, which is not correct. There are treatment adherence and compliance problems in children with TB, especially because of the long duration of
treatment (6 to 9 months) and also because they have to depend on others to take the drugs. They may refuse to take medicine or spit it out. Even in older children we can get issues of non-compliance, especially if we do not have child friendly formulations â€” the taste may be bad or the pills too big to swallow. It depends a lot on the caregivers to ensure that treatment is completed. Unfortunately we have very few quality assured child friendly formulations. So, very often one ends up using adult formulations with reduced dosage. The Revised National TB Control Programme (RNTCP) now has paediatric boxes which are made keeping in mind different age and weight bands in children. Luckily, side effects in TB drugs for children are very less as compared to those in adults. Professor (Dr) Surya Kant, Head, Pulmonary Medicine Department, Chhatrapati Shahuji Maharaj Medical University: For children we need syrup based formulations. Usually children like the syrups and syrup based formulations of vanilla, chocolate and other flavours should be prepared so that children can like the taste and find it easier to comply. Dosing schedule in the children is another important aspect. Often children are in a hurry in the morning to take their medicines on empty stomach, especially school going children. What we have tried in our hospital (and it worked) is to give the missed morning dose in the night after three hours of dinner. Because after three hours of dinner stomach is empty, so practically it is the same situation as in the morning when stomach is empty.
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When malnourished children with TB begin anti-TB treatment within two weeks or so their appetite increases and they need proper nutrition. After completion of antiTB treatment, the malnourished child if given proper nutrition as per appetite can become well nourished. Usually I avoid giving costly commercially available nutritional supplements and recommend green leafy vegetables, pulses, carbohydrates, jaggery which is a rich source of Iron, or other locally available cheap but nutritious diet. Anti-TB drug resistance in children is a major issue. MDR-TB is an iatrogenic problem. It is the effective motivation provided by the doctor which will increase compliance and adherence to treatment. Patients do not know the consequences of defaulting from treatment. It is we—the doctors’ community –that has to educate and regularly motivate the patients. One social worker must be employed in the hospital/private clinic to follow up with the patients through mobile phones/email, and make sure that they do not default from their treatment. This is the only way to control drug resistant TB by increasing and ensuring compliance and adherence to treatment. We have to educate the patients about consequences of defaulting from treatment. If we continue with the existing practices of treating at government and private health facility level, we will see a lot more extensively drug resistant (XDR) TB in the near future. In children living with HIV, TB treatment should be started first, and within 2-4 weeks of starting ATT, if there is indication of starting antiretroviral therapy, then it can also be initiated according to National AIDS Control Organization (NACO) guidelines. Dr ST Wali, Consultant Pediatrician and PO [Pediatric Care] – HIV, New Delhi: Easier Fixed Drug Combinations for children in the form of dispersible tablets will do miracles.
Dr Shanta Ghatak, India: it is sad that these fixed drug formulations for children have uncertain quantities of the drugs as per bioavailability standards. Paediatric TB drug boxes' utilisation and repackaging strategies have been an uphill task in terms of funds and manpower. But we never had the takers for the lower weight bands in the paediatric population for whom the dosage schedule had been worked out for. So in my opinion CSO partnerships must have the local private practitioners with them; Drug formulations should be kept under a tight control; quick notifications of suspects in the paediatric age group; and Accountability of the system for a consistent TB care for children Dr Subbanna, Director, LEPRA India: Advocate with the government to have child friendly paediatric TB formulations available. Global Alliance for TB Drug Development (TB Alliance): Children who contract TB most often do so from the adults around them. In that respect, pediatric TB is actually a barometer of overall TB within a community or region. The development of new pediatric-friendly TB drugs will help cure TB in children and help prevent them from spreading the disease. However, in terms of curtailing the sources of initial infection, the development of new and improved, simpler, and more efficient tools to prevent, diagnose, and treat TB in adults will help to reduce the reservoir of infections that subsequently trickle to children. Stopping childhood TB simply won’t happen without support from countries at every level. Governments should invest in and support the development of new and improved tools for children and adults, while community education about TB will help raise awareness about transmission and prevention practices that reduce the incidence of childhood TB infection.
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Dr Charles Namisi, Uganda: Successful treatment requires adequate patient preparation for treatment and ongoing support counseling for both the patient and the family. But of course there must be regular drug supply which is not the case for the 22 high TB burden countries. Dr Sudhakar Singh, Specialist Paediatric Medicine at Nelson Hospital of Paediatrics and Neonatal Medicine, Lucknow: Toxic effects of drugs like vomiting, nausea and intolerance are there. But if you are treating in proper dosing, with proper combination, these side effects could be minimized. If however an overdose is given then the side effects will be apparent. Good diet is very helpful in preventing side effects. One main reason for poor treatment compliance is lack of counselling. Patients who are counselled properly are very likely to complete the treatment. Counselling, proper drug dosage and categorization are very important for effective treatment and for controlling emergence of drug resistant TB. TB treatment is very cheap even in private sector and depends upon course of the treatment. For neuro tuberculosis the ATT course should be continued up to one year. Glandular/ pulmonary or abdominal TB treatment varies from six to eight months. The medicine cost is less than Rs 10 per day. It is my personal observation that the younger the child, due to poor immunity, the greater is the risk of infection with disseminated and neuro TB which is a dangerous form. Dr Dinesh Chandra Pandey, Specialist Paediatric Medicine at Nelson Hospital of Paediatrics and Neonatal Medicine, Lucknow: Poor adherence, improper acceptance, and improper duration for treatment, wrong judgment and incorrect dosage are the factors responsible for the failure of tuberculosis treatment,
“Poor adherence, improper acceptance, and improper duration for treatment, wrong judgment and incorrect dosage are the factors responsible for the failure of tuberculosis treatment” -
Dr Dinesh Chandra Pandey, Specialist Paediatric Medicine at Nelson Hospital of Paediatrics and Neonatal Medicine, Lucknow
emergence of disease resistance and increase of the disease burden and associated mortality in developing and developed countries.
Patients’ Perspective 14 years old Akash, studying in class 4, has already completed 4 months of anti TB treatment. He goes to some close by DOTS centre every Friday evening to get medicines for the whole week—to be taken on alternate days. Akash said (after a lot of mental counting) that he has to eat 8 tablets every alternate day, which he eats in the evening, although the doctor said to take in the morning. He never forgets to take the medicines. The doctors have advised him to avoid spicy and oily food and to eat a diet of green vegetables, rice, lentils and roti, but no milk or curd. They asked to give him meat and fish also, but it is a vegetarian family. The mother said that since he has started taking TB medicines, he has become very short tempered. But there is no other visible side effect of medicines. His overall
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condition has improved. There is no fever or cough now. His appetite has improved and his weight has increased by 5 kg-- from 25 kg to 30 kg. First they had said that treatment would continue for 6 months. Then some health worker told him, it will continue for 9 months. There is still no clarity about it. The father said that he would confirm at the next investigation whether medicines will continue for 6 months or 9 months. 6 years old Jugalkishore has been on ATT for the past one and a half months. He had been sick and coughing since he was two years old, but his poor parents could not afford treatment in private sector and nobody cared in the public sector for people like him. He was diagnosed with pulmonary TB in the summer of 2011 through an X-Ray done in a government
hospital, but advised to seek treatment in private sector, which the family not afford. After several hospital visits and innumerable requests he was directed to a DOTS Centre where his free treatment began in February, 2011. According to his mother he plays around and is active as he was before starting treatment. But at times he complains of headaches. Also there is no visible improvement in his cough. His cough increases whenever he cries and also during the nightâ€”exactly the same situation as before the treatment. Another X-Ray had been taken, but its report was still awaited. She feeds him on vegetables, rice, lentils and roti (Indian bread) but cannot afford to buy milk and seasonal fruits for the sick child.
Children who contract TB most often do so from the adults around them. In that respect, paediatric TB is actually a barometer of overall TB within a community or region. The development of new pediatric-friendly TB drugs will help cure TB in children and help prevent them from spreading the disease. However, in terms of curtailing the sources of initial infection, the development of new and improved, simpler, and more efficient tools to prevent, diagnose, and treat TB in adults will help to reduce the reservoir of infections that subsequently trickle to children. - Global Alliance for TB Drug Development (TB Alliance) 43 | H e a r i n g t h e u n h e a r d v o i c e s : S a v i n g c h i l d r e n f r o m T B
TB Factsheet (Source: World Health Organization)
CHILDHOOD TB • • • •
At least half a million children become ill with tuberculosis (TB) each year. Up to 70,000 children die of TB every year. 70-80% of children with TB, have the disease in their lungs (pulmonary TB). The rest are affected by TB disease in other parts of the body (extrapulmonary TB). There were over ten million orphans due to parental TB deaths in 2010.
TB FACTS • •
In 2010 8.8 million people fell ill with TB--But tuberculosis is curable and preventable. A total of 1.4 million people died from TB in 2010 (including 350 000 people with HIV) - TB remains one of the world's top infectious killers. About 95% of TB deaths occur in low- and middle-income countries and it is among the top three causes of death among women aged 15 to 44. Up to 70 000 children died due to TB globally in 2010--Childhood TB is often overlooked by health providers and can be difficult to diagnosis and treat. There are about 10 million orphan children as a result of adult TB deaths. TB is the leading killer of people living with HIV--About one in four deaths among people with HIV is due to TB. But about 910 000 lives were saved over six years (2005 to 2010) through coordinated TB and HIV services to detect, prevent and treat the dual infections. The number of people falling ill with TB is declining and the TB death rate dropped 40% since 1990--For example, Brazil and China have showed a sustained decline in TB cases over the past 20 years. In this period China, had an 80% decline in deaths. About 80% of reported TB cases occurred in 22 countries in 2010 --TB occurs in every part of the world. Forty percent of new TB cases occurred in South-East Asia in 2010. The greatest rate of new cases per capita was in sub-Saharan Africa. No country has ever eliminated this disease. Multidrug-resistant TB (MDR-TB) does not respond to standard treatments and is difficult and costly to treat-- MDR-TB is a form of TB that is present in virtually all countries surveyed by WHO. The primary cause of multi-drug resistance is the inappropriate or incorrect use of anti-TB drugs. There were an estimated 650 000 people with MDR-TB in 2010--In some cases an even more severe form of multi-drug resistant TB may develop with bad treatment. Extensively drug-resistant TB (XDR-TB) is a form of TB that responds to even fewer available medicines. About 46 million TB patients have been successfully treated since 1995 worldwide--Up to 7 million lives have been saved since 1995 through DOTS and the Stop TB Strategy. The world is on track to achieve two global TB targets set for 2015--The Millennium Development Goal, which aims to halt and reverse global incidence; and the Stop TB Partnership target of halving deaths from TB ( in comparison with 1990).
44 | H e a r i n g t h e u n h e a r d v o i c e s : S a v i n g c h i l d r e n f r o m T B
PARTNERS International Union Against Tuberculosis and Lung Disease (The Union) Irish Forum for Global Health (IFGH) TB Alliance McGill TB Research Group Treatment Action Group International Council of Women living with HIV (ICW) Zimbabwe Asian Harm Reduction Network (AHRN) ACTION TB Alert International Treatment Preparedness Coalition-India (ITPC-India) Global Health Strategies PATH Diabetes Foundation (India) Cambodian Health Committee (CHC) L’Association de Lutte Contre la Pauvreté en abrégé (ALCP) Positive Muslim Group, Myanmar Life Foundation, Pakistan The Good Neighbour Nigeria University of Nairobi, Kenya Medical Care Development Inputs (MCDI) Kenya Kenya Consortium to Fight TB, Malaria and AIDS (KECOFATUMA) Partnership for TB Care and Control, India Karnataka Health Promotion Trust (KHPT) National Coalition of PLHIV in India (NCPI+) PCI India MAMTA Health Institute for Mother and Child SNEHA Institut Pasteur de Madagascar Institute for Plantation Agricultural And Rural Workers (IPARW) Advocates for Health International Rural Youth Advocate for Health and Development in Nigeria (RYAN) Citizens for Healthy Lucknow (CHL) initiative Wote Youth Development Projects, Kenya Saaksham Foundation TEST Foundation PREPARE Foundation JBS Foundation Abhinav Bharat Foundation (ABF) Asha Parivar Samadhan National Alliance of People's Movements (NAPM) PRAYAS Health Group Indian Society Against Smoking (ISAS) Citizen News Service (CNS)
45 | H e a r i n g t h e u n h e a r d v o i c e s : S a v i n g c h i l d r e n f r o m T B
We can eradicate
TB 46 | H e a r i n g t h e u n h e a r d v o i c e s : S a v i n g c h i l d r e n f r o m T B
This is a report of an online consultation and key informant interviews on childhood tuberculosis conducted by CNS along with more than 50 p...
Published on Mar 25, 2012
This is a report of an online consultation and key informant interviews on childhood tuberculosis conducted by CNS along with more than 50 p...