I like to start by sharing a real story which I experienced in one of my visits in the field last year. I'm sure many of you working in the field have similar stories to tell. During a monitoring visit for our PPM program I came across a referral slip made out by a pharmacy staff referring a 36 year old woman to the DOTS health center.
Looking at the symptoms circled on the slip one could tell that this was certainly a pulmonary TB case; weight loss, fatigue, chest pain, fever, and cough with blood. We traced the referral to one of the district health centers where we found out that the woman had indeed gone for further evaluation, she was checked, diagnosed, given medication and sent home. We were told by the health center staff that since the first visit she came back twice, each time sicker than before, and was again send home, no TB. We decided to visit her at home where she lived with her husband, her in-laws, two small children and one baby. We asked the district TB officer to join us so he could be able to follow-up later on.
When we arrived in her small house we were taken up in her room, she was sitting on a straw mat on the floor, baby on the breast, glassy eyes, face flushed with fever. She repeated the same story that the health staff told us. She told us how disappointed, sad, and scared she felt, 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 center but they didn't have any more money and no transportation. Each time she coughed she hit on her chest to show us where it hurts. I will never forget the pain on her face, the shortness of her breath when she tried to tell us her story. I will never forget the fear I felt for the baby on her breast and her other two children and thinking that this woman unless treated immediately will soon die and leave these children orphans. 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.
So what went wrong? why did this woman sought care three times and still was send home with a bag of antibiotics and vitamins? This is a very common story and it's happening every day, many times a day around the world, especially in high TB burden developing countries.
I shared this story with you because I truly believe that once again we might not be able to reach our goal to Zero the numbers of children dying of TB in our lifetime, left alone by the year 2015, if we don't take some drastic steps to address the real problems that are preventing us from doing a good job. We can have the guidelines and country operational plans for TB in children, we can have the treatment algorithms however I strongly feel that these will not help much, especially in limited resource setting where stories such as this are real unless we start by:
(1) Holding governments accountable for the health and well-being of their populations, especially the children; health is a right not a luxury and not only for the few. Advocate governments for resource allocation that will increase the salaries of the health staff and will motivate them to perform their tasks in an appropriate manner; health staff in developing countries often do not get their salary for 3-6 months.
(2) Strengthening the DOTS program. If we had a quality DOTS program the health staff would have been able to accurately diagnose and successfully treat the mom in the story. They would have being able to prevent TB and the needless suffering in her children.
(3) Integrating TB into the primary health care and sensitizing all health care providers on TB. Once sensitized health staff be able to screen children and moms during immunization sessions, postnatal visits, reproductive health (RH) visits or other consultations.
(4) Most importantly recognizing the symptoms of TB in children, creating linkages and partnerships between communities, private providers and TB services
(5) Intensifying case finding and contact tracing when TB is suspected to all family members, most importantly to children. The majority of the children get TB from a family member.
(6) TB is a poverty disease, half of the children in the developing countries go without meals, they are malnutrition which makes them even more vulnerable to TB. Addressing the nutrition needs is of out-most importance.
(7) TB in a child that is already living with HIV is a double heartbreak and so much more difficult to diagnose and treat.
I might sound to you pessimistic, I am a little bit because TB is very political and things are moving very slowly; we cannot afford to move slowly anymore, we should not allow it. We need to step up and step up very fast. What we should all see at the end of 2015 is not just the numbers, the statistics showing fewer deaths, we should see children, happy and smiley faces, children free of TB. Where there is a will there is a way and collective voices will find the way. (CNS)
(The author works with PATH, Thailand, and is a globally recognized expert on tuberculosis (TB). She writes for Citizen News Service (CNS) and is leading an e-consultation on childhood TB in lead up to the World TB Day, 24 March 2012)