Archive for July 2012
An article written by JATB has been featured in Pediatric Infectious Disease 2012 April–June. The article is reproduced below. A link to the main article is provided below this post.
Six-year-old Pankaj and his 13-year-old brother Akshay were recently diagnosed as having extensively drug-resistant(XDR) tuberculosis (TB) at the LRS Institute, New Delhi. Their family hails from Punjab, and when the children started getting sick with a fever and cough that lasted for months and never seemed to be abating, they were referred to the LRS Institute. The pediatrician at LRS admitted them and asked the parents to purchase medicines for treatment.
The father, who is the only earning member in the family, is a vegetable vendor. Their monthly income is only around INR 3000, so they had to mortgage their home in order to buy the medication. This put them at risk of losing their home and made them poorer. The boys were removed from school by the principal and the whole family was subjected to stigma.
In a ward of the Regional Paediatric ART Centre of the Indira Gandhi Institute of Child Health (IGICH), Bengaluru,on a bed that is way too large for her, Aditi (2½), waif-like and weighing just 6 kg, lay, savoring a biscuit and smiling. Her eyes appeared too large for her pale, fleshless face; her limbs resembled brittle twigs. As her mother picked up Aditi and stood her on her feet, it seemed like her frail legs would snap under the weight of her body. The Senior Medical Officer said Aditi has been diagnosed human immunodeficiency virus (HIV)-positive and he suspected that she also had TB. But he was worried that it might not be possible to substantiate his suspicion through tests because it is difficult to accurately diagnose TB in children. This would make it doubly difficult for him to decide on a course of treatment for Aditi.
The cases above profile the various challenges associated with TB—stigma, treatment, diagnosis—all of these pose problems in one way or another. The problems are compounded in children many times over, and this article aims to highlight these challenges and point to developments across the world, which are attempting to address them.
THE EXTENT OF THE PROBLEM
Worldwide, about 1 million TB cases occur each year in children (under 15 years of age). It is well documented that India has the highest TB burden in the world with an estimated 1.8 million new cases every year. This disease takes away approximately 750 lives per day, even though it is preventable and curable. Exact figures for children suffering from TB are not available but it is the leading cause of death among Indians between the ages of 15 and 45—the most productive age group—causing the country a staggering US$ 3 billion in economic losses each year.
Tuberculosis is also the most common co-infection in people living with HIV, and children are no exception. Human immunodeficiency virus is the most powerful factor known to increase the risk of TB in children and the prevalence (more often extra-pulmonary) is almost 60%. Even though India, through the Revised National Tuberculosis Control Programme (RNTCP), affords good access to treatment, children face severe problems while being assessed for treatment. The most severe of these is related to accurate diagnosis of TB.
Revised National Tuberculosis Control Programme specifies in its guidelines that “…diagnosis of TB in children
has to be based on a combination of clinical presentation, sputum examination wherever possible, chest X-ray, Mantoux test and history of contact. Diagnosis of TB in children should be made by a medical officer. Where diagnostic difficulties are faced, referral of the child should be made to a pediatrician for further management…” (http://www.tbcindia.org/pdfs/Consensus%20statement.pdf).
“STOP TUBERCULOSIS IN MY LIFETIME”
At the “International Childhood Tuberculosis Meeting” held on March 17–18, 2011, in Stockholm, Sweden, it was recognized that children with TB are usually not given high priority in the national TB control programs despite increasing recognition that they are a vulnerable and important group. Children suffer severe TB-related illness that significantly contributes to the overall burden of TB and potentially to the overall child mortality. The most severe challenges with childhood TB were identified at the conference and prioritised for attention.
Through the theme of World TB Day 2012, “Stop TB in my lifetime”, special focus has been directed to the diagnosis and control of childhood TB. Dr. Mario Raviglione,Director, World Health Organization (WHO) Stop TB Department, in a message on World TB Day said, “Childhood TB has received little attention. It deserves more. We need to do everything in our power to drive a completely new level of effort that will lead to detection of all TB cases in children, their enrolment on treatment, their cure and, ultimately—reaching zero deaths caused by TB, HIV-associated TB or multidrug-resistant TB in children. The recently held Coordinating Board of the Stop TB Partnership agreed that a focus on children with TB calling for bold and strong actions at country level is extremely timely.”
Dr. Lucica Ditiu, Executive Secretary, Stop TB Partnership, added strength to his statement. In her World TB Day
message, she said, “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.”
There are strong indications that the increased focus on childhood TB will yield better results for children in need of accurate diagnosis and treatment. A lot of time has, however, been lost and it is imperative that the world community comes together to address the problems associated with childhood, the most urgent being diagnosis.
The call for action at the Stockholm conference therefore is a step in the right direction. An excerpt—“To ensure that all children exposed to TB or suffering from TB are correctly managed and receive the appropriate treatment,the individuals and institutions signing on to this call to action, pledge to advocate for universal access to prevention, diagnosis and treatment of TB for people of all ages.
We furthermore call on the international community to endorse this call for action.” Vigorous response to the call for action will ensure that Akshay, Pankaj, and Aditi among thousands of other children suffering from childhood TB in its various forms can hope for a cure and thereafter a better quality of life.
This article has drawn from the material published on Journalists against TB (JATB) and a post written by Blessina Kumar, TB Activist & Vice Chair-Stop TB Partnership (WHO, Geneva) for JATB. It has also used material from the Stop TB Partnership website.
Bharathi Ghanashyam, Founder Editor, Journalists Against TB (JATB); Head Communications, The Akshaya Patra Foundation.
On July 20, 2011, WHO urged countries to ban inaccurate and unapproved blood tests and instead rely on accurate microbiological or molecular tests, as recommended by WHO for detection of TB. The use of currently available commercial blood (serological) tests to diagnose active tuberculosis (TB) often leads to misdiagnosis, mistreatment and potential harm to public health, said WHO in a policy recommendation.
“In the best interests of patients and caregivers in the private and public health sectors, WHO is calling for an end to the use of these serological tests to diagnose tuberculosis,” said Dr Mario Raviglione, Director of WHO Stop TB Department. “A blood test for diagnosing active TB disease is bad practice. Test results are inconsistent, imprecise and put patients’ lives in danger.”
Almost a year later, on June 6, 2012, the Government of India (probably the first and only country in the world), issued a notification banning serological tests. This is a commendable move on the part of Government of India, but one that needs prompt follow-up and diligent enforcement. JATB decided to find out through a small exercise in one city (Bangalore), what the position was with regard to enforcement of the ban.
I called around ten laboratories, both large and small, to find out. Here are the findings…
I spoke to the senior most people available at each laboratory and barring one, none of the other laboratories had any knowledge about the ban. They were not aware about the WHO recommendation either. All the labs, without an exception, said that they continued to receive requests from general practitioners prescribing blood tests to detect TB, indicating a similar lack of awareness among them (general practitioners). On an average, each lab said they received around 30-35 requests per month. The tests cost Rs 700/- per antibody – an expense to the patient which has now proved to be completely avoidable.
Dr R Veena, Head of Laboratory Services, Elbit Laboratories, said, “A number of general practitioners prescribe these tests. We know that the tests are not accurate as they have low sensitivity and specificity, but we will continue to service the requests for these tests as long as doctors prescribe them.”
The next logical step was to ask some general practitioners for their views.
This was something of a shocker. As the labs declined to reveal the names of the doctors who were prescribing the tests, I had no opportunity to talk to those doctors. But I spoke to over 10 other general physicians. All of them emphatically said that blood tests were inaccurate and they did not rely on them at all. So who was prescribing them? What emerged was confusion and lack of clarity on the situation.
On the one hand, both laboratories and doctors agree that the tests are not accurate and hence not of much use in the diagnosis of TB. On the other, there is continued demand from doctors and labs continue to conduct these tests, as is evident from my interaction with labs. Patients continue to bear avoidable expenses on diagnostic tests that are not going to result in benefits.
The question to ask therefore is – where does the buck stop? Who must take responsibility for putting an end to this bad practice? It is obviously the government and probably National Accreditation Board for Testing and Calibration Laboratories (NABL), an autonomous body under the aegis of Department of Science & Technology, Government of India, whose mission is “To strengthen the accreditation system accepted across the globe by providing high quality, value driven services, fostering APLAC/ILAC MRA, empanelling competent assessors, creating awareness among the stake holders, initiating new programs supporting accreditation activities and pursuing organisational excellence.”
JATB requested answers from NABL about what was being done to ensure compliance to the ban. Dr Anil Relia, Director, Accreditation of PT Providers, in an unedited email interaction responded thus, “This WHO as well as GOI ban on serological tests for TB is already in knowledge of NABL. Subsequent to this notification, we have stopped accreditation of these tests. This has even been included in our draft NABL 112.”
Dr Relia, this is not enough. Given the ambitious mission of NABL, it is evident that achieving it will require a lot more than just intention. Action and quickly at that, is imperative. Patients deserve it – as a lay person, I don’t even look for NABL accreditation when I go to a lab for a test. My choice of labs is dictated by what my doctor recommends. So if your mission also includes creating awareness among stakeholders, I stake my claim to be educated and protected from all kinds of exploitation. And given the alarmingly high figures for TB in India, there is an even greater need for strict enforcement of the GOI ban.
JATB appeals to the Government of India, RNTCP and the Central TB division to, on a priority send out the ban notification to all the labs in India. It is not enough to issue press releases – more, much more action is required.