Winning project pictures life with Tuberculosis

The TB Photovoice Project, the winner of the 2010 TB Survival Prize, started as a one man's way to deal with the loss of his beloved ones to tuberculosis (TB). By now, it is touching the lives of many people around the world, helping – through pictures and narratives – to empower and raise the voices of persons and communities affected by the disease. Read more

The Tuberculosis Survival Prize is given each year by the Tuberculosis Survival Project, with support from the Lilly MDR-TB Partnership. The prize, an annual award of USD 2000, is awarded in recognition of innovation in TB/MDR-TB advocacy and social mobilization by individuals, groups or NGOs working in the field of HIV/TB or TB/MDR-TB. During a ceremony at the 41st Union World Conference on Lung Health in Berlin, Germany (November 11-15) the prize this year went to TB Photovoice.

The TB Photovoice Project provides cameras to community members (survivors, caregivers, friends, family) affected by TB, who take photographs that help them identify and improve their communities. The photographs and their stories represent what is happening in the participants' lives and serve as a point for discussion about what can be done to change the present situation in regards to TB, adherence, support, stigma, education and related issues. These photographs and their accompanying narratives give a face and voice to TB. There are initiatives in among others Brazil, Mexico, Thailand and the United States. The Stop TB Survivor award enables the project to start up a TB Photovoice in Kenya too.

Romel Lacson, founder of the Amaya-Lacson TB Photovoice Project, was personally affected by the disease, losing both his wife Claudia Amaya and their newborn daughter Emma to tuberculosis meningitis in 2004. "The project was sort of my reaction to that," he said at the sidelines of the conference. "I did not have TB myself but my family and my wife's family were providing care of her throughout the time she was in hospital. We felt very isolated, very disconnected from the world. When Claudia passed away it turned my life upside down. I had to try to make sense."

Over the years, the various initiatives - in partnership with local organizations - gave different meanings to TB Photovoice. "They have a basic foundation for it but depending on the mission of the particular organization and on the coordinator who is implementing and facilitating it, it really takes a character of its own," Lacson says. Yet there are core aspects that remain, such as photography, using images, narrative storytelling, dialogue, group discussions and ethical use of the camera. "Part of the training is to instill a sense of responsibility of the photographer that they take pictures that don't invade people's privacy or are not going to hinder any kind of confidentiality of what happened."

Eva M. Moya is involved with setting up TB Photovoice projects throughout the U.S.-Mexico border and in Mexico. With resources of the Amaya-Lacson Foundation a pilot TB Photovoice (Voices and Images of Tuberculosis) Project in the United States-Mexican border region was started in 2006. "We immediately realized we had to do it in a bi-national fashion,” Moya recalls. “It is a border community where tuberculosis knows no boundaries, where it doesn't need a visa to travel north or south."

Two groups of persons affected by TB were formed and received training, setting up photo galleries within four months. Policy and decision makers were invited and witnessed the work of the participants, and were asked to make commitments. "One of the beauties of this methodology is that you can actually see commitments," Moya says. "Which you can follow through time with decision, policy makers and health authorities so that there could be improvement. Whether it is in the area of access of services, in the leveraging of resources, or in making services much more focused on the person and services that are free of stigma and discrimination."

Through a partnership with Project Concern International SOLUCION TB the TB Photovoice (Voices and Images of Tuberculosis) initiative now includes nine projects in Mexico. Galleries that continue to move between communities. It was followed by Nuestra Casa, a three-dimensional house that reflects the life and stories of people affected by TB.

TB Photovoice asks its participants to be critical of their own community and their reality. "We ask them to tell us what it is that they see, to explain what is happening in their lives, to indicate where the problems, issues and challenges are. And then to be able to work with solutions," Moya says. Eventually many participants become activists. "There is a lot of overcoming of fears, sometimes of embarrassment, of distress, of sadness, of actually even rage, because several of our participants were unfortunately misdiagnosed. And they sort of transform that into a very powerful experience and they say well, we need to let the larger community know. It is very powerful when the story comes from the person affected and is presented to decision and policymakers, because it comes actually from the perspective of having lived the experience."

Rachel C. Orduño, one of the first participants in the U.S.-Mexico border project, lived the experience. She was diagnosed with TB in 2006 after three years of many misdiagnoses. Her treatment lasted 9 months. Her (at that time) 3 year old niece also had active TB and six other family members were treated for latent TB. Orduño remembers feeling helpless, frustrated and angry because of the misdiagnosis. Participating in the TB Photovoice Project altered these emotions.

"For people who are going through treatment, TB survivors, it is really important to share with other people," Orduño stresses. "For me TB Photovoice was first and foremost a support group. We gave each other advice and support and direction. The activist and advocacy aspect of it came later, once we felt like we can do something about it: we can't just ask the medical establishment to take care of us, we can't expect the government to look after us, we need to do something."

For Orduño that motivation came from being a group, having people to share ideas and the feeling of having something to contribute. "Now I don't see the power differential of the medical expert and the patient," she says. "Now it is the medical professional who got a lot of training plus the persons affected by the TB experience, the experience that makes us the experts. And seeing how we can be partners in developing a lot more effective treatments, how to reach the public at large and the public services."

The project even helped diminish her feelings of guilt. "That is something else that people don't tell you, that sometimes you feel very guilty for transmitting the disease to your most loved ones," she says. "I learned that for every year that I was untreated and had active TB, I could have infected 15 other people. So I may have possibly caused 45 infections. However by speaking up now, by spreading the word that we can do something about it, every one of us, all of us who have been directly been affected by TB and every medical professional and everyone who knows their story, we can all contribute. We can all try and do our best to recognize the symptoms and just be aware that TB is out there everywhere in the world. Anyone that breathes is at risk so everyone has a moral obligation and it would be a public service to do your part to contain it."

Babs Verblackt - CNS 
(The author is a freelance journalist and a Fellow of CNS Writers' Bureau)

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Book and video tell stories of TB in Thailand

Inspiring stories, both on paper and film, have recently been published to address the issue of tuberculosis (TB) in Thailand. The TB/HIV Research Foundation bundled the memories of volunteers working with people affected by TB in a book, and made a video to enhance treatment adherence among people living with TB. Read more.

In ‘Let me wipe your tears and touch your heart’ eight volunteers share their best practices and most inspiring experiences in caring for people with TB or with TB/HIV co-infection. These volunteers help people living with TB in coping with not only the physical suffering, but also the social, economic and psychological difficulties they face because of the disease. Many persons with TB and TB/HIV co-infection face depression, hopelessness, stigma and anxieties because of their disease.

In short chapters, the book reveals touching stories of the work of the volunteers, who themselves all had or are still living with TB, HIV or TB/HIV co-infection too. “It shows the important role of their volunteer work,” Saiyud Moolphate, project manager of the TB/HIV Research Foundation, at the 41^st Union World Conference on Lung Health in Berlin, Germany (Nov 11-15).

“These volunteers might be poor in real life, but they are incredibly rich in their hearts,” she added. “They inspired many of the people who they took care of to become volunteers themselves too.” The book, published in both Thai and English, will be distributed at hospitals for free to ‘let people appreciated the volunteers’ work’.

The TB/HIV Research Foundation also released a new video for people with TB or TB/HIV and their family members. The twenty-eight minutes video focuses on increasing knowledge about TB, empowering people with TB and TB/HIV with the stories of survivors of the diseases, and building hope and will-power through messages from representatives of various religions.

By providing information and inspiration, the video aims to enhance treatment adherence.

Treatment of TB usually takes 6 to 9 months and many people find it hard to stick to the treatment. “Often people have to stay in an isolation room for some time. Depending on the situation this can vary from a few days to several weeks,” Moolphate explains in an interview with CNS. “There they stay alone, separated from everybody and everything. The video can help to give them power and hope to deal with the disease.”

Both the book and the video were produced in cooperation with The Research Institute of Tuberculosis, Japan Anti-Tuberculosis Association (RIT/JATA) and sponsored by The Mitsubishi Foundation. Previously, the TB/HIV Research Foundation published similar books, such as one with the same title as the new video, in which stories and pictures of people with TB before and after treatment are printed.

Thailand is among the countries with the highest burden of TB in the world. According to recently released new data of the World Health Organization (WHO) there were around 130,000 TB cases and 12,000 TB deaths in Thailand in 2009.

Babs Verblackt - CNS
(The author is a freelance journalist, a Fellow of CNS Writers' Bureau and Associate Communications atTuBerculosis Vaccine Initiative – TBVI)

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An Integrated Health System Is What We Need

Health remains the most important goal in one’s life. All diseases need proper attention, though (one may argue) some need more attention than others. Our fight should not be directed merely against certain specific diseases, but to have  a disease free and healthy mind and body. To achieve this, we will need to strengthen health systems and work towards the fair and equitable distribution of health care resources to all those who need them. Read more

Many developing countries have extremely weak public health systems. About 80% of India’s health care delivery system is through the private sector. This makes it even more complex to deal with it, because the role of primary health centres in community health is very crucial – whether we are dealing with non communicable diseases (NCDs) or communicable diseases (CDs).

The last few years have seen a tremendous increase in funding for some diseases like HIV/AIDS in comparison to the so called non sexy illnesses like tuberculosis, diabetes and acute respiratory infections (ARIs). According to the first ever Acute Respiratory Infections Atlas published very recently, ARIs are the third largest cause of mortality in the world and take twice the toll in lives lost, as compared to HIV. Still only about 1% ($32 million) of all pharmaceutical research/development funding was spent on research for ARIs in 2007 as compared to $1.1 billion spent on HIV related research. According to Peter Baldini, CEO, World Lung Foundation, "We know that at least four million people die from ARIs, yet the global health community does not even recognize them as a distinct disease group."

So despite being major killers, some diseases may receive a fraction of government and donor agency support, for various inexplicable reasons. This disproportionate funding should be viewed as a positive problem, according to Dr Anil Kapur, President, World Diabetes Foundation (WDF).

He says that "The past 20 years have witnessed a tremendous amount of health development systems emerging and we must compliment the world community to have come together to provide that sort of assistance. It started with the activism of HIV/AIDS, justifiably at the point of time where people felt the need of help, which was provided. We have thus built some systems to deal with the issue. Over a period of time we are learning that some actions we took to deal with different health problems (like HIV/TB, malaria, etc) might not have been appropriate. The debate about disproportionate funding in some health sectors has started to happen. I am positive that there will be more equity in the distribution of resources. The clear issue is that if money goes not only to provide drug treatment, but to improve health systems, then we can surely reap better benefits. Funding should be for health and local governments should be allowed to allocate funds according to specific needs."

It indeed is an artificial way of looking at health issues by compartmentalizing communicable and non communicable diseases. Dr Kapur rightly believes that the same public health principles apply to both. For example, if an index case of a communicable disease like tuberculosis is identified, we try to provide a protective environment, where people surrounding this person are tested so that infection does not spread. In diabetes too, when an index case is identified, the family members should be given appropriate advice as they share the same risk behaviour as the index case. Another example is the issue of HIV/AIDS. When patients are given anti retro viral treatment (ART), many of them may develop metabolic syndrome, over a period of time as part of side effects of the drugs. Should they not be treated for diabetes, which they develop as a side effect?

A mother on ART to prevent mother to child transmission, may develop gestational diabetes. And then we will not be able to separate the two issues. To me linking maternal health and prevention of future diabetes is a very relevant issue.

The whole field of foetal origins of adult diseases has come to the forefront as the first 1000 days of life since conception are very crucial in determining our future health. If a mother is undernourished, she will give birth to a small weight gestational baby. If this happens to be a girl child, she might develop gestational diabetes and/or other diseases later, and pass the risks to her offspring.

Hence maternal and child health forms the backbone of all health care systems. We need to integrate all these critical public health issues at the primary care level. TB, HIV/AIDS, diabetes are all becoming chronic diseases, and should not be compartmentalized. Dr Kapur feels that we should talk to each other and do not compartmentalize. It is time that organizations, agencies, and specialists reach out to each other and understand the problems of health care delivery. Then we can resolve the issue of equity and imbalance in resources.

We need to build public health systems where we are able to provide knowledge and information about relevant illnesses, in a given community, and use that to provide them basic curative services. This is the real challenge.


Shobha Shukla - CNS
(The author is the Editor of Citizen News Service (CNS) and also serves as the Director of CNS Diabetes Media Initiative (CNS-DMI). She has worked earlier with State Planning Institute, UP. She was supported by the Stop TB Partnership to write from the 41st Union World Conference on Lung Health, Berlin, Germany (11-15 November 2010). Email: shobha@citizen-news.org, website: www.citizen-news.org) 




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Will access to essential asthma medicines be on NCD Summit agenda?

Asthma is the most common chronic disease. Since 2000, some areas of public health, such as tuberculosis (TB), have gone from being deprived of resources for decades to having significant amounts of funding. While important gaps remain, this “dream come true” has also revealed that spending better is equally necessary as spending more. Ms Cécile Macé, Pharmacist and Coordinator, The Union's Asthma Drug Facility (ADF) said at the 41st Union World Conference on Lung Health in Berlin, Germany that "ADF improves affordability of essential asthma medicines in developing countries." Read more

It is not only important for the countries, particularly low- and middle- income countries to have access to affordable asthma medicines but quality is important to monitor as well. The Asthma Drug Facility (ADF) is a mechanism to improve access to affordable and quality asthma medicines where they are needed most, said Cécile Macé.

Lack of adequate skilled healthcare providers to manage asthma care is also a critical impediment to the response. Improving skills of healthcare personnel by the development of guidelines and training packages, is another key priority to improve response to asthma in low- and middle- income countries, said Cécile Macé.

Assessing quality of asthma care by regular monitoring, is another key challenge, said Cécile Macé.

Policy makers and economists need to understand that asthma care is a smart investment –because costs increase manifold when asthma is either not treated at all or incorrectly treated. So a wise strategy and to make the best use of every resource available, it is vital to manage asthma in the right way and provide standard treatment and care, said Cécile Macé. We need to reduce the unnecessary expense of emergency asthma, said Cécile Macé.

Due to sustained advocacy, one of the outcomes is that there is more financial support available for asthma programmes. Around 30 countries received funds through the Global Fund to fight AIDS, TB and Malaria (GFATM) under their tuberculosis (TB) application to implement the Practical Approach to Lung health (PAL) strategy, which is a part of the WHO Stop TB Strategy, which also includes among others, an asthma care component. Other health financing mechanisms need to consider supporting asthma care as well.

One of the methods for financing medicines is a revolving drug fund (RDF) in which after an initial capital investment, medicine supplies are replenished with monies collected from the sales of medicines. We should encourage donors to support the purchase of asthma medicines through initiatives like Revolving Funds. Revolving fund is a sustainable solution for asthma response, said Cécile Macé.

It will be strategic opportunity for the forthcoming United Nations (UN) Summit on non-communicable diseases (UN Summit on NCDs) in September 2011 to also address this need to ensure access to essential asthma medicines in low- and middle- income countries.

Bobby Ramakant - CNS 


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More poverty and tuberculosis (TB) in indigenous peoples

"Where we have indigenous people, we have more poverty and more TB incidence" said Mirtha del Granado, Regional Adviser on TB, WHO (in Americas) at the 41st Union World Conference on Lung Health, Berlin, Germany. There are 63,432 missed cases of TB in Americas (North, Central and South America), said Mirtha. Most of them are in Priority countries detecting less than 50% TB, said Mirtha. Read more


According to estimates about 6% of the population in Americas (45-50 million) are from indigenous communities, which include 400 different indigenous populations living in 24 countries.

Stressing on the link of poverty with TB, Mirtha said that 94% of indigenous population in Latin America are living n TB priority countries. In priority countries like Guatemala and Peru, more than 40% of their population is indigenous.

In Chile, the TB incidence in general population is 25 cases per 100,000, but among indigenous communities in Peru, the TB incidence is of 170 – about 6 times more!

In Brazil, TB incidence in general population is 20 per 100,000 but among indigenous communities it is 32.7

In Panama, TB incidence in general population is 43 per 100,000, but among indigenous communities it is about 126-167.

In Mexico, TB incidence in general population is 27 per 100,000, but among indigenous communities it is about 236 – close to nine times more!

In Canada, TB incidence in general population is 5 per 100,000, but among indigenous communities it is about 24.5 – about five times more!

Brazil is a good example of addressing TB in indigenous population effectively. There is a special national policy to offer integrated approach to indigenous populations in Brazil.

As a result of sustained efforts to address TB in indigenous communities in Brazil, the TB rate has come down among indigenous peoples from 97.2 (2001) to 32.7 (2008). In general population the TB rate in 2008 was 20.65 per 100,000.

The declining incidence of TB in indigenous populations in Brazil is an outcome of a combination of TB programme and development programme said Mirtha.

Bobby Ramakant - CNS 


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Right to health of indigenous peoples essential to Stop TB

"Basic human rights as enjoyed by others have not benefitted indigenous peoples. Therefore the respect and recognition of the rights of indigenous peoples is critical to our dignity and survival. In particular, implementation of our right to health is essential if we are to stop TB" said Wilton Littlechild, Regional Chief, Assembly of First Nations, who was speaking at the 41st Union World Conference on Lung Health in Berlin, Germany. Read more

There are approximately 370 million indigenous peoples globally in more than 70 countries. Although programmes have been designed to combat TB, indigenous populations globally have been left out of such efforts due to cultural barriers, language differences, geographic remoteness, and economic disadvantage. TB rates among indigenous people are consistently higher than general public. During the five year period 2002-2006, the first nations TB rate was 29 times higher than others born in Canada - for the Inuit, it was 90 times higher. Pacific islanders and Maoris are 10 times more likely to contract TB than other people living in New Zealand. In Kalaallit Nunaat, Greenland, residents have a risk rate more than 45 times greater than Danish born citizens. More than 80% population in Greenland is indigenous.

These challenges will not be easily met - but they can be met by ensuring indigenous peoples are true partners in global TB control. We have a comprehensive and achievable plan to stop indigenous TB globally, but to realize our goal we need support, said Chief Littlechild.

Indigenous people have a consistent pattern of health inequality across a variety of jurisdictions from resource poor to the resource rich. Indigenous health inequalities are multi-faceted, and are both social and political in nature.

The inequities faced by indigenous peoples are much severe than in general population. Countries like Canada report that poverty has gone down but poverty in indigenous peoples has gone up. In prisons too there are a significant number of indigenous peoples. There are host of other life conditions that put these people at an elevated risk of infectious diseases like TB - overcrowded housing and lack of access to safe drinking water are just few of those challenges.

The strategic framework to control TB among indigenous peoples was developed through consultations with indigenous leaders, TB experts and health advocates from over 60 countries. It is designed to take an indigenous approach that links the right to health, education, housing, employment, and dignity. It is based on equality of opportunity to the highest level of health attainable world wide. It will serve as a tool to build a social movement to raise awareness of indigenous TB, to develop targets and messages, to pilot interventions and to monitor TB trends among indigenous peoples. An important component to this framework calls upon indigenous peoples to demand access to TB prevention and treatment measures in their communities.

Bobby Ramakant – CNS 


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Canada endorses the Declaration on Right of Indigenous Communities

As the 41st Union World Conference on Lung Health in Berlin, Germany was going on, another development took place in Canada – which will surely impact public health including tuberculosis (TB) and lung health among indigenous communities. Canada endorsed the Declaration on the Rights of Indigenous Communities. Wilton Littlechild, Regional Chief, Assembly of First Nations, has been a powerful advocate demanding this endorsement from Canada since years. Four states had voted against the declaration initially, New Zealand, Australia, United States of America and Canada. However, New Zealand and Australia had changed their position and endorsed the declaration earlier. Now Canada too have endorsed the declaration, thankfully. Read more


"Indigenous people around the world have sought recognition of their identities, their ways of life and their right to traditional lands, territories and natural resources. However throughout history, their rights have been violated" said Chief Littlechild.

Chief Littlechild gave an overview of significant milestones in demanding policy change and responses to the human rights of indigenous communities.

In 1923, Haudenosaunee Chief Deskaheh had travelled to Geneva to speak to the League of Nations and defend the right of his people.

1925 Ratana first travelled to London with a large delegation to petition King George, but he was denied access.

The International Labour Organization (ILO) Convention 169 (1991) Article 3 states that indigenous peoples must fully enjoy fundamental human rights without obstacles or discrimination.

The ILO Convention 169 Article 2 gives governments the responsibility for ensuring that all indigenous people have the same rights and opportunities as non indigenous peoples.

The ILO Convention 169 Article 5 recognizes and protects the social, cultural, religious and spiritual values and practices of these peoples.

The ILO Convention 169 Article 7 specifically refers to the obligation that states parties have with regard to the improvement of the conditions of life work, levels of health and education as a matter of priority in national plans.

The ILO Convention 169 Articles 14 and 16 guarantee the rights of ownership and possession of land by indigenous peoples and the right not to be displaced.

"No health without land for indigenous people," rightly said Chief Littlechild.

"The declaration on the rights of indigenous people was adopted by the general assembly on 13 September 2007. The declaration is the most comprehensive statement of the rights of indigenous peoples ever developed, giving prominence to collective rights to a degree unprecedented in international human rights law" said Chief Littlechild.

The drafting of the declaration began in 1985 and the first draft was completed in 1993. In 1995, the commission on human rights set up its own working group to review the draft adopted by the human rights experts of the working group and the sub-commission, said Chief Littlechild.

"There are many steps that should be taken to apply indigenous rights’ lens to TB programmes" said Chief Littlechild.

Countries like Bolivia, Colombia, Ecuador, and Mexico, have all written multiculturalism into their constitutions to ensure that their country’s legislation conforms with convention obligations and international human rights guidelines related to the highest attainable standard of health.

"The ministers of health and policymakers should be trained on the obligations from international human rights conventions to which their government is a party. If national health policies, plans, and programmes, do not align with these obligations, efforts should be undertaken to revise them so as to make them consistent with those conventions and standards" said Chief Littlechild.

Policy makers can build and expand databases from national and sub-national sources to measure and monitor the impact of ethnicity on the exercise of human rights and fundamental freedoms related with health and the right to health per se, said Chief Littlechild.

The national TB control programmes (NTPs) can systematically monitor TB trends among indigenous populations to determine ways to improve healthcare. NTPs can also investigate the ways in which health is determined by outside factors, and the extent to which the government can remedy problems of infrastructure, said Chief Littlechild.

The NTPs, NGOs and civil society should also build networks of national and sub-natoinal research institutions that focus on health or other issues of importance to indigenous populations.

The minister of health can encourage the dissemination of culturally appropriate health information materials in local languages, the inclusion of traditional leaders, healers in health promotion, said Chief Littlechild.

Outlining the unique social determinants that affect health of indigenous communities, he listed: colonization and colonialism, residential schools in some schools TB rates were so high that they were locally referred to as TB schools), language and culture, indigeneity, geographical locale, racism and self determination.

Victoria Tauli-Corpuz, Chairperson, of Permanent Forum on Indigenous Issues, had once said: "Actions taken to reach the MDG [millennium development goals] health goals cannot be measured solely in terms of improving average health outcomes. They must also be evaluated in terms of their consistency with a human rights based approach which emphasizes participatory, non-discriminatory and accountable actions to improve the health of indigenous peoples."

Endorsing of the declaration on rights of indigenous communities by Canada and other nations shall go a long way in not only reducing diseases like TB among indigenous peoples but also improving quality of life and conditions that respect human rights.

Bobby Ramakant - CNS  


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Simple, safe and effective medication is a right of all TB patients

A new report, presented at the 41st Union World Conference on Lung Health  held recently in Berlin, Germany, by a consortium of international TB organizations (Bill and Melinda Gates Foundation, the Clinton Health Access Initiative, the Global Drug Facility (GDF), Treatment Action Group, the International Union Against Tuberculosis and Lung Disease (The Union), the Global Alliance for Drug Development (TB Alliance), and Management Sciences for Health) has highlighted that many TB patients, especially in the developing countries, are still not getting simple, quality assured first line medicines which are available in the global market. Read more

In the words of Dr Nils Billo, Executive Director of the The Union: "This report is a wakeup call for the TB community. All TB patients should have the right to consistent supplies of simple, quality assured medicines when they need them. The world desperately needs to refocus on the most basic level of TB care or we risk returning to the times before antibiotics."

TB is a curable disease, and yet it kills 1.8 million people globally every year. It is also the leading cause of death for people co infected with HIV. Although there has been progress in scaling up effective TB programs worldwide, the total number of TB cases continues to rise and drug resistance is growing. In 2008, there were roughly 500,000 cases of MDR-TB globally.

TB patients around the world are too often given poor quality medicines, or non-user friendly formulations consisting of up to 16 pills at a time. Sometimes they may be unable to take the prescribed medicines because of drug non availability. Without appropriate medicines at the right time, patients risk stopping treatment, spreading the disease to others, and raising the threat of drug resistance or even death.

Quality assured fixed dose combination drugs (FDCs), recommended by WHO, are considered the international “gold standard” for TB treatment and are extremely effective when administered correctly. FDCs are medicines that have two or more drugs combined in a single pill. FDCs can strengthen basic TB control by preventing mono therapy that can lead to drug resistance, thus helping to control the emergence of MDR-TB. They drastically reduce the number of pills a patient has to take, making treatment more acceptable to the patient and increasing the likelihood of treatment adherence. Using FDCs in TB control simplifies the doctor's prescription and patient's drug intake, as well as procurement and distribution of the drugs.

Government TB treatment programs of 20 out of 22 high burden countries are currently using some form of FDC formulation. But in China and India, which together carry the burden of 35% of the world’s TB cases, non FDCs continue to predominate the public sector. Brazil and China are slowly moving towards them. India, however, does not regard FDCs to be clinically or operationally superior to its current co-blistered single-drug pills. Opponents of FDCs in India refuse to accept the fact that co blistered single medicine pills substantially increase the risk of non adherence through selective consumption. They also say that FDCs cost more, although a full first line FDC drug regimen costs merely $26.

FDCs have many advantages over the single-pill regimen. A patient on WHO prequalified FDCs takes an average of 3 to 4 pills daily, which reduces the chance of missing a dose. Patients on the higher dosed Indian co-blistered single-medicine pills will take 7 to 12 pills thrice weekly (on alternate days). In actual practice, this makes adherence more non compliant. In the revised Indian DOTS program, the first dose of each week is administered under direct supervision at a DOTS centre, and the next 2 doses of the week are supplied to the patient (following his presentation of the empty blister pack of consumed drugs of the previous week).

FDCs are currently not available in the doses required for this thrice-weekly dosing schedule. But the current DOTS strategy of calling the patient to the centre has its own drawbacks. I personally know of many patients who are just too irregular and stay on and off the medicines, increasing the chances of drug resistance. There is very little follow up system to ensure that the patient goes to the DOTS centre every week. Also, patients may often forget to take the drugs on alternate days. It is much user friendly to take the pills every day.

 FDC sales are strong in the Indian private sector, where 48 distinct first line dosage variants of FDCs available. This lack of standardization makes correct dosing more complicated, thus increasing the patients’ risk for treatment failure and drug resistance even when FDCs are used.

Apart from  non availability of FDC drugs in the public sector, many TB patients seeking treatment are receiving medicines that do not meet the quality standards recommended by the WHO and required by the GDF. In India’s public sector, an estimated $14.8 million are spent on drugs that are not required to adhere to the international ‘gold standard’ level of QA, as against $12.2 million spent on quality assured drugs.

Very little is known about the quality of TB medicines in the private sector. Patients in this sector may be at risk from substandard medicines. It is appalling that many manufacturers in developing countries have separate production lines for domestic and international markets. Even some of those who produce WHO prequalified TB medicines simultaneously produce lower quality medicines for less regulated markets, as these are cheaper to make. The private market for FDCs is however more concentrated than the loose drug market, with just four manufacturers (Lupin, Macleods Pharma,  Wyeth and Sandoz) capturing nearly 70% of the overall private market share across the 10 countries examined, including India. Three of them produce at least some TB medicines that are WHO prequalified.

Thus we see that substandard TB medicines are all too common in high burden countries. This can make TB treatment ineffective and even dangerous. Ensuring access to safe and effective medicines is a critical element of the global fight against TB and can limit transmission and prevent resistance.

Renewed political commitment to basic TB care is critical to addressing these challenges. Regulators will have to work with manufacturers, the WHO and others to ensure that patients get quality assured FDCs, even in the private sector. This becomes all the more critical in the light of new TB drugs in the pipeline, which are expected to drastically improve TB treatment. Once available, they may face the same challenges, defeating the very purpose of their invention.


Shobha Shukla - CNS
(The author is the Editor of Citizen News Service (CNS) and also serves as the Director of CNS Diabetes Media Initiative (CNS-DMI). She has worked earlier with State Planning Institute, UP. She was supported by the Stop TB Partnership to write from the 41st Union World Conference on Lung Health, Berlin, Germany (11-15 November 2010). Email: shobha@citizen-news.org, website: www.citizen-news.org) 


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Communities' demand can drive development of new TB tools

Berlin, Germany: Louder voices and more demand for new tools against tuberculosis (TB) from people and communities are needed to push the fight against the airborne disease, participants of the 41st Union World Conference on Lung Health in Berlin, Germany (November 11-15) stressed. Read more


"Governments don't support TB research and development enough. We have to empower communities with more knowledge on TB issues to move governments to do something," Lucy Ghati, Community Representative to the Stop TB Partnership's Working Group on New TB Vaccines and Program Officer of the National Empowerment Network of People Living with HIV and AIDS in Kenya remarked at a press briefing on the state of TB vaccine development. "Without being pushed governments won't do anything," she added. "But we need new commodities to address TB and HIV: new diagnostics, better drugs and – if we want to have a long term solution – new vaccines."

The current diagnostics, drugs and vaccine against TB are outdated and not efficient enough. Peg Willingham, Senior Director External Affairs at the Aeras Global TB Vaccine Foundation, presented the example of TB vaccines in a separate media meeting held to brief journalists on key issues on the conference agenda. BCG, the only currently available vaccine against TB, is partly effective against severe forms of childhood TB but fails to prevent the most prevalent form, pulmonary tuberculosis in adults. Researchers around the world are working to develop new, more effective and safe vaccines, which will be affordable and available worldwide.

"It is important that the community is involved in the research. Therefore, our clinical trial research partners in the countries where we test new vaccines do a lot of community outreach," Willingham explains in an interview with CNS, citing different ways to engage and inform people such as through radio programs, outreach to schools, and comic books.

It is also essential to consider the perspectives of the decision makers at national levels who will play the leadership role in rolling out future new vaccines.  "We want to make sure that what we are doing is what countries want," Willingham said. Aeras works to involve communities at all levels of society, as demonstrated by a recent market study done among national-level decision makers in high TB burden countries.  The study, still in preliminary form, showed that TB is considered a significant health problem that does not get the attention it deserves.

"It would be a kind of a virtuous circle if people from the community said new vaccines are something they want," said Willingham, explaining that community engagement helps build demand for vaccine research and development, and it fosters clinical trial recruitment.  Local involvement and demand is essential to building government support for research.

An added challenge to building demand for vaccines is that prevention is often overlooked.  As Willingham explained, vaccines administered in childhood that have worked in preventing illness are quickly forgotten.  The cause and effect relationship of vaccines and the disease they prevent are not immediate, as with medication that quickly provides relief.

Stigma surrounding people with TB and the lack of advocates willing to add their voices to public calls for new TB vaccines also contributes to the lack of awareness about the inadequacies of BCG and the need to improve or replace it.

"People are always surprised to hear still two million people die of TB every year," Willingham says. "More people need tell to their personal stories and provide the face of people with TB. We have to figure out a way to reduce that stigma, figure out how to get people to feel safe and brave to speak up because otherwise people will keep dying quietly, behind closed doors, and it will never get any better."

Joris Vandeputte, Senior vice president advocacy and resource mobilization at TuBerculosis Vaccine Initiative (TBVI) reaffirmed the need to deal with stigma at the TB vaccines  press briefing. "Stigma has consequences for advocacy efforts and resource mobilization for TB as well," he said, at the same time acknowledging the achievements made with the (limited) funding available. "There are currently 12 vaccine candidates ready to be translated into vaccines that are globally accessible as well as promising diagnostics and treatment avenues. We have to work hard to translate these into products ready to be used in the field. For vaccine candidates to be translated, financial resources must be multiplied by 3 to 4 compared with the present effort. To overcome this huge challenge, we will have to be innovative."


Babs Verblackt - CNS
(The author is a freelance journalist, a Fellow of CNS Writers' Bureau and Associate Communications at TuBerculosis Vaccine Initiative – TBVI)

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In The Year Of The Lung: Breathe, Live And Learn

(Based on an interview given exclusively to CNS by Dr. Dean Schraufnagel, Vice president of The Union, and Professor of Medicine and Pathology, University of Illinois College of Medicine, during the 41st Union World Conference on Lung Health, which was held in Berlin during 11--15 November,2010)
The connection between breath and life is fundamental, yet lung health does not seem to be high on the public health agenda. Around 10 million people (especially the poor, old and the weak) die every year, due to lung diseases, including tuberculosis, asthma, pneumonia, influenza, lung cancer and chronic obstructive pulmonary disorder (COPD) which is soon going to become the number one killer. Read more

One common factor which links all these diseases is consumption of tobacco. Tobacco use remains legal, although it kills more than 5 million people each year, including more than 1.3 million who die of lung cancer, which is the number one cancer that kills. Apart from this, thousands of others suffer due to exposure to second hand smoke. There is direct evidence in the US of heart disease cases dropping dramatically with a ban on smoking.

With an increase in awareness about ill effects of smoking in the developed countries, tobacco companies are shifting base to developing countries in a big way. They are making subtle and nefarious ways to get youngsters hooked to tobacco, in order to sustain their own livelihood. They are offering candy flavoured chewing tobacco (which is called gutkha / pan masala in India) and herbal/mild cigarettes to lure especially women and children, who are mislead to believe that these lethal addictions are harmless. There is a strong debate worldwide to ban flavoured and herbal cigarettes.

We have to remember that all types of tobacco are bad- whether chewing or inhaling, whether herbal or mild- as the key ingredient in all of them is nicotine, which is highly  addictive and harmful.

Social awareness is the key to success of controlling tobacco use. A change in our thought process, coupled with appropriate legislative action can bring down the epidemic of lung diseases to a large extent. The process has already begun. Smoking at airports, and inside hospitals is now unthinkable. But there should be no special smoking zones anywhere, in the same way as it is ridiculous to have urinating and non urinating zones in a swimming pool. As water will flow from one part of the pool to another, the cigarette smoke will mix and mingle with the air and travel far and wide.

In the words of Dr Schraufnagel “I am a lung specialist and hence have to deal with this problem directly. In USA there has been a perceptible fall in smoking, though it has not signed the FCTC. When I ask my patients, especially women patients, if they smoke they say they used to earlier but no longer now, because of children and social non acceptability.

Some studies have shown a direct link between price and cigarette usage—an increase in taxes brings down cigarette consumption.  But social awareness and attitudinal changes will be permanent effective tools. It is here that we can use the expertise of kids to force parents to quit. Children’s persuasive powers are strong and cannot be underestimated.”

He gave an example of a place near Chicago which they were trying to make smoke free. But restaurant owners opposed it vehemently, saying that they would lose their customers who would insist on smoking. It was later found that tobacco companies had bribed the restaurant association heavily to achieve this. But strangely, one restaurant owner, who was one of the strongest votaries of tobacco, went smoke free. When I asked him the reason for this, he said that his grand children had refused to come to his restaurant because of cigarette smoke.

Dr Schraufnagel strongly feels that, “Each one of us should remember that we are involved with each other’s health. If a person smokes, he/she is jeopardising the health of those in the vicinity, due to second hand smoke. And we have no right to play with the health of others, though we may be naive enough to play with our own. Whenever anyone suffers from tobacco related, or any other disease the rest of the society pays for it in some form or the other (public health, private insurance, free govt health schemes, etc). So smoking cannot be an individual’s choice. We need to turn the tables on tobacco companies by creating social/attitudinal changes throughout the countries. This, along with raising taxes and outlawing smoking/chewing tobacco would work fine.”

I personally have seen many  smokers on the roads of European cities like Italy, London and Berlin-- perhaps because smoking has been banned inside offices/buildings. But what we  need is a change of habit, and not merely a change of place. A lethal item should not be used anywhere.

The International Union Against Tuberculosis and Lung Disease (The Union) has been very involved with its efforts to ban smoking/tobacco use throughout the world. It offers widespread support to the more than 160 nations that have ratified the first-ever international public health treaty – the WHO Framework Convention on Tobacco Control – and calls upon the remaining countries to do so;

The challenge is to put ‘Lung In Action’ to ensure that each one of us understands the risks and symptoms of lung diseases and how to keep lungs healthy, because lung health is essential to life.

We are together in this fight for a cleaner and healthier breath.

Shobha Shukla - CNS
(The author is the Editor of Citizen News Service (CNS) and also serves as the Director of CNS Diabetes Media Initiative (CNS-DMI). She has worked earlier with State Planning Institute, UP. She was supported by the Stop TB Partnership to write from the 41st Union World Conference on Lung Health, Berlin, Germany (11-15 November 2010). Email: shobha@citizen-news.org, website: www.citizen-news.org) 


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Diabetes And TB : Do Not Neglect One At Cost Of Other

The discussions at the recently concluded 41st Union World Conference on Lung Health,  in Berlin, brought forth several connections between diabetes and tuberculosis, clearly showing a link between non communicable and communicable diseases. According to Professor Anthony Harries, a seasoned physician and Director, Department of Research, at the International Union Against Tuberculosis and Lung Disease (The Union), "There is very good evidence which suggests that if you have diabetes, the risk of TB is twice than if you do not have it. In terms of diagnosis and treatment also, there is similarity of obstacles. We do not have simple diagnostic tests available for both these diseases." Read more


"To get a blood sugar count done for diabetes is as cumbersome a process as sputum microscopy test for pulmonary TB. There is a more advanced test - glycoselated haemoglobin test - which looks at the blood sugar profile of the last 3 months to test for diabetes. But it is an expensive test and not available everywhere, in the same sense as LED Microscopy and other advanced tests for TB are not there for the common person. Also, monitoring diabetes is perhaps equally difficult. We do not have very good data about what happens to patients of diabetes—how many develop complications, how many actually die at global level. It would be nice to have something like DOTS strategy here also to provide data on the outcome. An electronic monitoring system, very much on the same lines as in HIV/AIDS is needed for people living with diabetes. So, in terms of innovation, we need a point of care test s for both the diseases, which can revolutionize diagnosis and monitoring in resource poor countries. Diabetes, like TB, not only impacts the health of a person, but also the wealth of the affected households, in terms of  the number of productive years lost /compromised upon, and the heavy, prolonged cost of treatment" further said Prof Anthony Harries.

Dr Anil Kapur, President of World Diabetes Foundation (WDF) echoes similar sentiments. According to him, "People with diabetes are in a way immune compromised. So the risk of getting TB becomes greater for them, as in the case of HIV/AIDS patients. Hence from the population point of view, diabetes is as relevant in the control of TB as HIV/AIDS. Unfortunately, due to lack of knowledge and information, many people all over the world continue to wrongly perceive diabetes as a disease of affluence. We should not give diabetes the short shrift in TB control programmes. Else we will jeopardise the gains of active case findings and appropriate treatment. If we are not able to control people with TB having diabetes in the background, we will land up with more cases of MDR-TB, and with people remaining infected over a longer period of time, thus causing a reversal of the gains we might have achieved."

The problem of funding is there in both cases, but perhaps more in diabetes. Organizations need to give a fillip to research in this field too. Moreover, while the governments pay for the medicines of a TB/ HIV patient, diabetes treatment costs are not supported by the state. This becomes all the more critical as, contrary to popular belief, diabetes is not a disease of rich people alone. In fact, 70% of the burden of the disease globally exists in poor countries. Let us hope for a change in the general mindset of people. Health professionals should be updated and be aware of the link between diabetes, TB and other co infections. Funding agencies and governments should allocate funds to both in a realistically appropriate manner and not at the cost of each other.

Let one not become the driver of the other.


Shobha Shukla - CNS
(The author is the Editor of Citizen News Service (CNS) and also serves as the Director of CNS Diabetes Media Initiative (CNS-DMI). She has worked earlier with State Planning Institute, UP. She is supported by the Stop TB Partnership to write from the 41st Union World Conference on Lung Health, Berlin, Germany (11-15 November 2010). Email: shobha@citizen-news.org, website: www.citizen-news.org)  

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Strong tuberculosis (TB) control relevant when social determinants weak

One of the most adversely affected communities is at times least likely to seek care – as demanding care might have a price. "Relevance of strong tuberculosis (TB) control programmes is more when social determinants are weak" said Dr Ernesto Jaramillo from Stop TB Department, WHO at the 41st Union World Conference on Lung Health, Berlin, Germany. Read more


Although it is believed that healthcare services in public sector might be free or cheaper, yet 74% and 96% patients were seeking care in private sector in Bangalore (India) and Yangon (Myanmar) respectively. Clearly more needs to be done to reach the unreached people who might be dealing with conditions like TB and poverty.

A study titled 'Trends in TB incidence and their determinants in 134 countries' concluded that although TB control programmes have averted millions of deaths, their effects on transmission and incidence rates are not yet widely detectable. In many other sessions at the 41st Union World Conference on Lung Health it became evident that a medical response alone is just not enough – and a strong community-led social response to TB care and control can only bring in the desired difference.

There are enough studies done to show that numerous conditions increase the risk to TB manifold – these include HIV infection, malnutrition, diabetes, tobacco use among others.

In an earlier conducted consultative workshop of TB and poverty sub-working group of the Stop TB Partnership it became evident that those people who are the poorest and marginalized due to any of the myriad reasons, are also most at risk of diseases of poverty like TB, and least likely to get timely, proper diagnosis, treatment, care and support. "They are not the ones who are missing rather we are the ones who are missing them" said Dr Ernesto Jaramillo.

Same goes for indigenous communities or aboriginal peoples in many countries. TB rates are disparate for indigenous communities when compared to general population in the same country! If TB rates among indigenous communities in Canada are 4 times than among general population, it is likely that the TB incidence among indigenous communities might be even higher in Asia and Africa, said Dr Anne Fanning, a noted TB expert, former President of the International Union Against Tuberculosis and Lung Disease (The Union) and a recognised global authority on TB and indigenous communities.

The WHO Stop TB strategy calls for partnership with poor and marginalized communities for DOTS expansion, engaging all providers, and steps to deal with TB-HIV co-infection, multi-drug resistant tuberculosis (MDR-TB), among others. Indigenous community is a good place to start, and it is a matter of human rights, said Dr Fanning. The DOTS is essential but clearly not sufficient, said she.

Efforts in TB control are not enough, what we need to do is something about social determinants, said Dr Fanning.

The WHO Stop TB Strategy also advocates strong engagement of affected communities with dignity. The Patients' Charter for TB Care, is a rights and responsibilities based framework that is an integral part of the WHO Stop TB Strategy and should be implemented in all communities, particularly those at higher risk of TB like indigenous communities or aboriginal peoples.

Bobby Ramakant - CNS 


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