Introduction

Sustainable healthcare provision, requires effectively functioning systems from clinical to governmental level. This is a challenging task and only by identify and improving weaknesses within the whole system is will things progress. No matter how good a clinician is, or how hard they work, if the support systems are failing, they will not be able to work effectively.

Human rights have become an invaluable tool for improving health systems, aswell as broader social factors effecting health, such as discrimination and violence. Article 12 of the International Covenant on Economic, Social and Cultural Rights, which has come to be known as ‘the right to health’, requires governmental recoginition of everyone’s right to ‘the highest attainable standard of physical and mental health’. The Universal Declaration of Human Rights also explicitly recognises health rights, particularly in Article 25, where wider social determinants of health including food, clothing and medical care are also specifically noted. The highest attainable standard of health requires health systems to function effectively, on all levels. Failing in this due to incompetance and neglect constitutes violations of these rights, as the ‘highest attainable standard of health’ is not being achieved.

This article discusses how a number of organizations in the Mexican state of Chiapas are applying human rights frameworks to the case of tuberculosis (TB). It will identify failings in the realisation of the highest attainable standard of health, and explore ways to ensure sustainable improvement in health care provision to indigenous populations in this area.

Mexico – Middle-Income, High Inequality

Mexico is classified by The World Bank as a middle-income country, with a Gross National Product of US$1,086 billion. In spite of its financial resources, Mexico has high levels of inequality, with 20% of the population living on less than US$2 per day (1). It also has the poorest Human Development Index rating of all the OECD countries (2). A recent report also criticized for having health indicators well below the average for the OECD, with specific mention of access inequalities and inadequate health insurance coverage for the poor (3).

Chiapas is the southern-most state of Mexico, bordering Guatemala to the south. 26% of the Chiapas population is composed of indigenous groups, the majority of which are of Mayan descent – the inhabitants of this region before the arrival of the Spanish in the early 1500s (4). Despite being rich in a variety of natural resources and a significant producer of Mexico’s hydroelectric power, Chiapas is one of the poorest Mexican states.

The indigenous people of Chiapas have suffered a long history of discrimination, marginalisation and prejudice, punctuated with violent episodes, from the bloody arrival of the Spanish in the early 1500s, to the 1997 ‘Acteal Massacre’ of 15 children, 21 women (four of whom where pregnant) and nine men, in a church by a group of paramilitaries. The situation culminated in the 1994 uprising of anti-governmental groups, predominantly composed of empassioned indigenous peoples. The best known of these groups is the Ejercito Zapatista de Liberacion Nacional (EZLN), more commonly referred to as the ´Zapatistas’. The EZLN intended to force the end of the mistreatment of indigenous people in Mexico, predominantly using a stratagy of non-complaince and civil resistance. The EZLN formed a parallel government which still controls a number of areas in Chiapas

Health as a Political Tool

The political climate in Chiapas has led to the fragmentation, politicisation, and general degradation of already limited governmental provisions, required for the realisation of human rights. Beyond simply not providing it, healthcare has been used as a political tool to fragment, and therefore weaken, some of the poorest communities in Mexico (5). This politicisation of both governmental, and anti-governmental health services, has resulted in people being denied treatment including childhood vaccinations, and receiving abuse from health workers, due to their political affiliation and or ethnicity (5). Attempting to sway pollitical opinion by denying unwell people their right to available treatment, is unacceptable and unjustifiable regardless of context.

Statistics show that healthcare resource allocation inversely correlates with marginalisation in Mexico, with health expenditure per-capita for insured people being up to twelve times higher than for those without health insurance (6). Looking at TB in mexico, these inequalities in health care provision are striking.

TB in Chiapas

Chiapas has one the highest TB incidence rates in Mexico, with a TB mortality rate twice the national average, the highest of any Mexican state (7). However, independent research has found significantly higher rates of TB in Chiapas, indicating that the situation in Chiapas may in fact be much worse than suggested by governmental research (5).

Particular factors relating to the development of TB, that are common in the rural indigenous communities of Chiapas, include high rates of malnutrition, cooking with solid fuels, dirt-floored housing, poor sanitation, cramped and over-crowded accommodation, poor access to medical services and poor working conditions (8,9). Such factors are also central to the development of many other other communicable and non-communicable diseases, hence steps to address such factors can have health implications beyond TB.

The Mexican Official Norm (10) details the specific approach that should be taken concerning the monitoring, identification, and treatment of TB in Mexico. Furthermore, in 2009 Chiapas included a pledge in their constitution to meet the United Nations Millennium Development Goals, including Goal 6, which specifically refers to TB. These developments create the appearance of political will, however, the failings identified by human rights organizations show that in practice, neither national nor international standards are not being met (8).

A number of specific TB cases in Chiapas are presently being used to highlight human rights abuses resulting from failures in healthcare provision, that under international law, Mexico is legally bound to address. Patients failed to recieve health related information in which was culturally, linguistically and contextually appropriate; there were unjustified breaches of patient confidentiality; and experianced politicisation, discrimination, stigmatisation, and cultural insensitivity within service provision. The Direct Observed Short Course (DOTS) as advised by the World Health Organisation (11) was poorly implemented, including inappropriate treatment regimes; lack of medications resulting in gaps during treatment; lack of contact tracing; the failure to provide medication to TB contacts and many people had simply been given incorrect diagnosises (8). All these factors have had significant negative impacts upon patients in Chiapas (8). Using the evidence and understanding from these patient cases will allow for the specific failings in the the system to be addressed and bring about broader health improvements to health care in Chiapas

It is important to identify the key factors that resulted in failures of service provision. For example, it is the state’s responsibility to inform national government of medication requirements relating to patients identified as having TB. This has been highlighted as one of the points at which the system has broken down in the specific cases being investigated. This was compounded through inadequate identification of TB cases (5).

Monitoring systems also show major flaws: for example, all of the 145 cases of TB identified in the Los Altos region of Chiapas during 2000 (8) have had their records lost, and subsequently have received no follow-up (personal correspondence between CCESC-DDS, ECOSUR and Chiapas Health Secretary Jurisdiccion Sanitaria No.II). Furthermore, discrepancies between government and independent research indicate that inadequate TB surveillance mechanisms, through lack of identification, are underestimating disease prevalence, and are not identifying patients in need of treatment (5). The situation has resulted from multiple avoidable factors, for which financial support was available but not used. For example, in 2008, 60% of the health budget for Chiapas was simply not used (12) at the same time as medications for TB were not available at a clinical level. Money that should have been used to purchase medication remained unused, and was subsequently returned to central government resulting in a reduction in the consecutive year’s health budget. Such large scale organisational failings clearly have a considerable impact the standard of health attainable for patients, and are subsiquently completely unacceptable.

Effective management of TB can only be achieved through comprehensive, well executed programmes, with a strong grounding in political will (13). The cases presently being highlighted show multiple failings at all levels of health care provision, indicating a lack of the necessary political will. Human rights form the basis of the legal obligations of states to their population, applicable to all persons without discrimination of any kind. In general, governments are aware that poor human rights records are damaging to their position in the international community. International pressure could therefore influence political will in Mexico where it is needed, but this has not been forthcoming.

Organisations in Chiapas have initially analysed the situation from a human rights perspective, and then used this work to address the situation. For example, CCESC-DDS lobbied at the Mexican Congress using the research that had been done, and successfully ensured an audit and review of the TB program in Chiapas. This process is to be followed up by an independent inter-organisational right to health observatory, who will also monitor other important health issues in Chiapas.

The case of TB is used here to highlight human rights violations. Through legal procedures they hope to initiate improvements in the regulation of human rights in Chiapas, which in turn will improve health care provision for all. Many of the issues raised with reference to TB, such as the lack of medicines, lack of staff, and issues of access are equally applicable to other health and civil society issues. These cases have informed various civil society groups about rights-based issues, many of which are now seeking further education in human rights and ways to use these legal frameworks with reference to their own work in Chiapas.

Conclusions

The example of TB in Chiapas highlights multiple failings in the realisation, and direct abuse, of universal human rights to which the indigenous people of Chiapas are entitled. Human rights are inalienable, and it is clear that appropriate steps for their realisation have not been taken in public health delivery. This lack, in particular the right to health, has resulted from complex interactions between social, political, and historical factors. Although these factors have led to the present situation, they do not justify it. Facilitation the achievment of these rights is the duty of the Mexican, and Chiapas state, government. The failures in the realisation of these rights constitute human rights violations, and therefore requires appropriate attention. It is primarily the responsibility of the Mexican government to identify why such abuses came about, and take the required action to improve the functioning of health provision in Chiapas. It falls to them to compensate people who have suffered as a result of previous rights abuses and to enable the realization of human rights for the people of Chiapas. It is also the responsibility of the international community, including the other members of the OECD, to hold Mexico to its human rights obligations. Ignoring the rights abuses in Mexico undermines one of the most important social developments of our times – universal human rights declarations. This article is an example of the practical application of human rights in relation to health, and we encourage other groups and organizations to look at issues from this angle. For more information please see ccesc-chiapas@blogspot.com, or email observatoriosalud@gmail.com with information about other organizations using a similar approach.

Keir Philip is a fourth year student at the University of Sheffield in the UK
mda05kep@sheffield.ac.uk

The author would like to acknowledge the help of Marcos Arana, his supervisor during his time in Mexico, in the writing of this paper

Acromyms

CCESC-DDS – Centro de Capacitación en Ecología y Salud para Campesinos-Defensoría del Derecho a la Salud (Center for Training in Ecology and Health for Rural workers- Right to Health Defence Group)

ECOSUR – El Colegio de la Frontera Sur (The College of the Southern Border, an academic research institution)

OECD – Organisation for Economic Co-Operation and Development

WHO – World Health Organisation

References

(1) World Bank accessed 15.01.2009 http://web.worldbank.org/WBSITE/EXTERNAL/COUNTRIES/LACEXT/MEXICOEXTN/0,,contentMDK:20185184~menuPK:338403~pagePK:1497618~piPK:217854~theSitePK:338397,00.html

(2) UNDP accessed 15.09.2009 http://hdrstats.undp.org/en/countries/country_fact_sheets/cty_fs_MEX.html

(3) OECD 2009. Economic Survey of Mexico 2009Accessed 15.09.2009 at http://www.oecd.org/documen/53/0,3343,en_33873108_33873610_43393781_1_1_1_1,00.html

(4) INEGI, II conteo de Población y Vivienda 2005

(5) PHR (2006). Excluded People, Eroded Communities: Realizing the Right to Health in Chiapas, Mexico accessed 15.09.2009 at http://physiciansforhumanrights.org/library/report-excludedpeople-2006.html

(6) Loranzo R, Zurita B, Franco F, et al (2001). Mexico: Marginality, Need, and Resource Allocation at the Country level. In: Evens T, Whitehead M, Diderichsen F, Bhuiya A, Wirth M (eds). Challenging Inequalities in Health: From Ethics to Action. New York: Oxford University Press. 290-291

(7) Secretaría de Salud 2009 accessed 15.09.2009 at http://www.salud.df.gob.mx/ssdf/index2.php?option=com_content&do_pdf=1&id=673

(8) Nájera-Ortiz JC, Sánchez-Pérez HJ, et al (2008). Demographic, health services and socio-economic factors associated with pulmonary tuberculosis mortality in Los Altos Region of Chiapas, Mexico. International Journal of Epidemiology. 37(4): 786-795

(9) Bruce N, Perez-Padilla R, Albalak R, (2000). Indoor air pollution in developing countries: a major environmental and public health Challenger. Bull World Health Organ. vol.78 no.9 Genebra 2000

(10) NOM-006-SSA2-1993. NORMA OFICIAL MEXICANA NOM-006-SSA2-1993, PARA LA PREVENCION Y CONTROL DE LA TUBERCULOSIS EN LA ATENCION PRIMARIA A LA SALUD. – 26/01/1995 accessed on 19.09.2009 at http://info4.juridicas.unam.mx/ijure/nrm/1/252/default.htm?s=iste

(11) WHO 2005. Global Tuberculosis Control: Surveillance, Planning, Financing. WHO Report 2005 (WHO/HTM/TB/2005.49). Geneva: World Health Organization, 2005.

(12) El Financiero en Linea. Viernes 7 de agosto 2009 accessed 15.09.09 at http://www.elfinanciero.com.mx/ElFinanciero/Portal/cfpages/contentmgr.cfm?docId=207758&docTipo=1&orderby=docid&sortby=ASC

(13) Maartens G, Wilkinson R, (2007). Tuberculosis. The Lancet; 370: 2030-43 Published on line August 23, 2007 at http://www.thelancet.com/journals/lancet/article/PIIS0140-6736(07)61262-8/fulltext

The Nobel Laureate Rabindranath Tagore wrote in his collection of song offerings to the almighty, Geetanjali “As we go into the depths of truth we realize the magnitude of injustice in this world“. A fine example of this injustice is the disease Tuberculosis, which though a fully treatable disease has attained the status of an epidemic in India and other developing countries.

Introduction

Tuberculosis is an airborne infectious disease caused by the bacteria Mycobacterium tuberculosis. Droplets and droplet nuclei containing bacteria spread into the air when a person with active TB disease of the lungs breathes, coughs, sneezes, speaks or sings. Every person with TB bacteria in the lungs (sputum-positive case) has the potential to infect others. Tuberculosis can also affect other body parts such as pelvic organs, intestines, meninges and lymph nodes.

Mycobacterium tuberculosis can survive within the human body for many years. Incubation period of the disease therefore varies from few weeks to several years. The disease occurs when the body’s resistance is sufficiently lowered. Malnutrition is one of the major causes leading to low body resistance. Unsanitary, overcrowded conditions, lack of education, poor quality of life, population explosion, global travel, all these also predispose to infection. Infection with HIV/AIDS is another reason for TB infection setting in.

Symptoms of TB include chronic cough, presence of blood in sputum, unexplained fever and unexpected weight-loss. If any of the above mentioned are seen then the patient should undertake the sputum test. The sputum smear is a cost effective and simple test. It can be easily done free of cost in all Government Designated Microscopy centres. A sputum positive patient is one who is coughing up the bacteria in his sputum. This is responsible for the rapid spread of the disease in the community. An average TB patient, if untreated can infect 12 others (1). Thus, to prevent the rise in the number of patients, all contacts of an identified patient should be screened and tested for the disease. TB is one of the major causes of loss of human life, infertility, loss of productivity and social stigma, especially against women and children.

The Problem

Overall, one-third of the world’s population is currently infected with the TB bacillus. 5-10% of people who are infected with TB bacilli become sick or infectious at some time during their lifetime and historically, tuberculosis has been one of the world’s biggest killers.

Globally, there were an estimated 9.27 million incident cases of TB in 1997 (2). Most of the estimated cases in 2007 were in Asia (55%) and Africa (31%) (2). Tuberculosis has been nearly eliminated from the developed world, and the prevalence rates have dropped drastically (3). At the same time, Asia and Africa share 86% of the case burden from the disease. It is estimated that within the next 10 years, 300 million people will become infected by TB. Nearly one third of over 11,000 business leaders from all over the world expect tuberculosis to affect their business in the next 5 years, and one out of ten expect the effect to be serious (4). Keeping all these facts in mind, we can no longer afford to have tubular vision, only when we have accepted the enormity of the problem that we can we work towards a reasonable solution

TB in India

One fourth of all TB patients are in India, making it the country with the highest TB burden in the world. More than 1,000 people die every day, almost 400,000 each year (5). TB is also the biggest killer of people in the productive age group i.e. 15-49 years. Recovery takes 3 to 4 months, but very often, the poor lose their jobs because of the social stigma against the disease, and the loss of wages has disastrous consequences to entire families. The loss to Indian economy is US$ 300 million in direct costs, and US$ 3 billion in indirect costs (1). The prevalence of infection in India (as judged by the standard tuberculin test) is about 30% (6). The prevalence of bacteriological confirmed disease was 4 per 1000, and the incidence of new cases was about 1.5 per 1000 (7).
There is horrifying discrimination against TB patients. Every year 100,000 women suffering from TB are expelled from their families to die of disease and starvation, and 300,000 children are thrown out of school (8) because of TB or forced to leave school because a wage earning parent has TB. One important reason for the failure of TB eradication is the social problems associated with the disease, which has existed since times immemorial. Centuries ago, TB was considered as a curse of the gods and any patient was treated like an outcast. But even in today’s era of science and technology the situation has not improved; we still seem to be living in the dark ages. Discrimination against women of all ages continues. In many families an infected girl child is not treated at all, instead is left to die. People are forced to leave their jobs if their employers get knowledge of their condition. All these myths and taboos need to be dispelled and TB shown to be a common bacterial infection like many others so the patient can be treated with magnanimity, compassion and love by friends, family and society.

HIV and TB

HIV and TB form a lethal combination, each speeding the other’s progress. HIV weakens the immune system. Someone who is HIV-positive and infected with TB bacilli is many times more likely to become sick with TB than someone infected with TB bacilli who is HIV-negative. TB is a leading cause of death amongst people who are HIV-positive. In Africa, HIV is the single most important factor contributing to the increase in incidence of TB since 1990.

The DOTS Programme

Control means reduction in the prevalence and incidence of disease in the community. The WHO definition of control is when the prevalence of infection is less than 1% in the age 0-14 years. In the absence of a reliable vaccine, the most powerful weapon to achieve this is active case finding and treatment (10).

Treatment of tuberculosis has been standardised by the WHO promoted programme called DOTS (Directly Observed Therapy Short-course), launched in 2006. DOTS has been proved to be the most successful and cost-effective method of TB treatment and has succeeded in markedly decreasing the prevalence of the disease from the world. DOTS is a 6 month therapy in which a patient needs to take the medication 60 times in a appointed DOTS centre in the presence of a volunteer or a semi-trained professional. The medicines are not given for home consumption. This is because people are either careless, or fear the disclosure of their condition and hence stop taking the medicines on a regular basis. Default can lead to MDR (Multi Drug Resistant) TB, the treatment of which is expensive and not easily accessible. DOTS-plus for MDR is not universally available, actually the first step in controlling MDR-TB is prevention by full implementation of DOTS, in order to combat an emerging epidemic. Effective DOTS program is the prerequisite for implementation of DOTS-plus (11). Each patient of MDR infects 12 others with MDR, this has led to the very real fear of an MDR epidemic.

DOTS has been shown to be effective in many situations across the world but the main reason for its success was effective planning and implementation. India launched its DOTS program in 1997 and to date more than 97% of the country has DOTS coverage.

Community Approach

We recently started getting involved with Operation ASHA which is one of the largest Non-Governmental Organizations working for TB control and treatment. It is currently serving a population of 2,000,000 slum dwellers in urban India, operating in 10 cities in 5 states: Delhi, Punjab, UP, Rajasthan and Haryana. Operation ASHA has perfected a low cost, patient-friendly, replicable model, which can be effectively utilized in other parts of the world (http://s01.opasha.org/).

“Tuberculosis is a scar on the face of Earth,” says Dr. Shelly Batra, MD, the Founder-President of Operation ASHA. She is a renowned gynaecological surgeon working with a major hospital in Delhi. For two decades she has operated on needy patients free of cost and worked pro-bono for patient education.

“Three years back we decided to focus on one public health problem where the need is immense,’ says Dr. Batra, “and we decided on TB as our focus. TB elimination is one of the millennium development goals of the United Nations (12), thus WHO and major international agencies are providing tremendous support by way of free diagnostics and medicines, which constitute eighty percent of our costs. Our cost leverage is 25 times. We spend only 15 dollars to treat a patient, because medicines, which constitute $310, and public facilities worth another $50 are provided free by the government. This makes sure that the donor’s money produces maximum results because of our highly cost effective and result oriented programme.”

Operation ASHA’s aim is to provide TB treatment at a time and place convenient to patients, at centers located deep in the urban slums. In the WHO’s DOTS program, patients need to visit a treatment center about 70 times over a seven month period. Therefore accessibility of DOTS centers is a key issue. The government of India’s Revised National TB Control Programme (RNTCP) provides adequate facilities by way of public hospitals, physicians, diagnostics like sputum testing centres, and there are more than adequate amounts of ATT medicines available in the warehouses of public hospitals. What are lacking are adequate DOTs centres, for which the government is inviting and encouraging public-private partnerships. Right now, there is a high rate of default or missing doses, partly because the DOTS centers (from which medication has to be taken) are few and far between, and open at inconvenient times. It has been found in one study that the distance and travel costs to a TB service center were the factors associated with delay in seeking diagnosis of tuberculosis (13). A large number of TB patients belong to the marginalized section of society, who cannot afford to let their family starve for the sake of medication.

Operation ASHA has solved the problem by establishing a critical network of centers, embedded deep in the urban slums, that increases the accessibility of the drugs and other facilities for the patients. TB treatment has been made available at the doorsteps of the slum dwellers. Moreover, these centers are open early in the morning or late at night, so patients can carry on with their day to day activities and get their treatment at a time that does not make them lose their daily wages. Operation ASHA has involved the community for delivering DOTS, and has enrolled providers and counsellors, all of whom belong to the community they serve.

DOTS centers are manned by providers, who, while carrying out their daily business, also provide TB treatment to patients. Providers provide the space for running a DOTS centres in their premises. Centres have been opened in temples, small shops, phone booths, religious centers and high traffic areas such as bus stops and entrances to slums. Anyone who wishes to serve the community, can become a DOTS provider. A DOTS provider is trained by the Operation ASHA staff. A simple 2 hours training is all that is needed. Providers are offered basic remuneration, and are the part time employees of the organization. To make sure the providers stay focused and sincere, the system has been designed in such a way that their regular business does not suffer. The providers are paid an incentive- based salary, which is approximately 25% of their monthly earnings. Their status in the society is enhanced considerably because they are treated like doctors who are curing people of a deadly disease. Moreover, there are economic benefits to those engaged in business because of increase of visits to their establishments.

All that is needed to open a DOTS center is the space of about 5 sq feet, in which to keep a rack containing the individually labelled boxes of medicines, and also a water jug, weighing machine, disposable glasses for water, patients cards given by the RNTCP and colour coded boxes containing OTC drugs to treat fever, acidity and vomiting. Most patients come to DOTS centres early morning, this includes workers, women, and school children. Factory workers doing evening shifts come in the evening after work. All a provider has to do, when a patient comes, is to identify the patients’ box of medicine, make the patient swallow it in his presence, and put a tick on the card. The OTC drugs are there not only to treat side effects of the disease, they are given to anyone in the community who needs them, thus everyone, not only TB patients, are encouraged to visit the center, which is recognised as a community health center, not a just TB treatment center. This is helps reduce the stigma against TB.

For every two centers, Operation ASHA has one full time counsellor who has many responsibilities. Suspected cases are sent by the counsellor to visit the nearest diagnostic facility, where sputum test is performed, and then to the public hospital, where the physician examine the patient, and decides on the medicine. It is the job of the counsellor to get the entire box of 6 months treatment allotted and kept in the DOTS center nearest to the patient’s house. Well before starting treatment, the counsellor has to educate the patient and entire families in order to minimize default. Patients are warned of the dangers of missing the dose and subsequently developing MDR-TB. The patients’ families are persuaded to treat the person with kindness and compassion.

The counsellor has to spend 4 hours in the DOTS center every morning, when there are the most patients, and help the provider in giving the medicine. At this time, patients’ questions are answered and doubts are cleared. The counsellors also carry out daily checks to see if any patients have missed a dose. In case of a patient skipping a dose, they trace the patient to his house and repeat the counselling in front of the patient’s entire family to bring him back into the system. The counsellors are chosen from the community they serve so that they are familiar with the patients and their families, and can trace patients to their houses in areas where there are small huts, and no house number or road number for identification. Because of this intensive counseling, Operation ASHA’s default rate is less than 2%, by far the best in the world.

Counsellors also visit five families in their geographical area on a daily basis. They go door to door and educate people about the symptoms of TB, thus they are carrying out active case finding. They also conduct fortnightly camps, which are attended by about 50 to 100 slum dwellers, where again patients are educated about TB and encouraged to come forward for testing. With all this, the detection rate has gone up by 78% in South Delhi region. The counsellors are chosen with great care – they need to have a high school diploma and are made to undergo 4-6 weeks of training at the NGO’s Delhi office, after which they have to pass a written test and a mock counselling session. Only then are they recruited and sent into the field. The counsellors get an incentive based salary where incentives are given both for zero default and for finding new cases in the community.

“TB is not just a disease, it is a socio-economic issue,” declares Dr. Shelly Batra. “TB treatment has great economic benefits. It can safely be said that TB treatment leads to improved productivity, economic upliftment and empowerment of women and children and societies as a whole.”

At top management level this organization has senior doctors, businessmen and bureaucrats who raise funds to support the work by collecting donations and organizing sales and auctions of Indian handicrafts in India and the US.

Having scripted one of the best treatment fights in the world, Operation ASHA enjoys patronage from some of the best academicians, institutes, and governments of the world. We were taken around on a tour of the facilities and the set-up is exemplary in its organization. It was a pleasure getting to see how a small step became a highly successful venture with path-breaking results, which have been lauded by the Government of India, and many other world bodies. This year, Operation ASHA has been elected on the board of Stop-TB partnership, a partnership housed by the WHO, to represent the NGOs of the developing world.

Thus we can conclude by saying that this burning issue needs to be tackled on a war footing and needs a “hammer and tongs” approach. We can make an impact only if we can treat a large number of patients simultaneously. DOTS expansion and providing flexi-DOTS are the need of the hour. This, in the present scenario, seems the best approach for eradication.

Rimi’s Story

Before finishing, we would like to recount a patient’s narrative:

One of Operation ASHA’s patients is a 12 year old girl, Rimi. She lives in the slums of Delhi, and had been unable to go to school for more than a month because of constant chest pain and low grade fever. Her father had suffered from tuberculosis of the lungs, and had been treated successfully about a year before in a government hospital. Since he had suffered the disease himself, he was naturally concerned about his daughter’s recent symptoms. He met with the volunteers of Operation ASHA who took Rimi into their care and started her on treatment.

Rimi takes her medicines from Operation ASHA’s local DOTS provider, who lives about ten yards from her house. She visits the treatment centre early in the morning, and hence she doesn’t need to miss even a single day of school.

Rimi now feels fit and fine. The fever has left her, so has the chest pain. She is living a normal life, going to school and playing with other children. Once a fortnight her parents reward her by taking her to the cinema or buying her an ice-cream. She is happy and optimistic about the future.

“When I finish school, I want to train to be a nurse,” she declares. “Then I want to work with Operation ASHA, so that I can help others, just as you have helped me.”

If Rimi can help, so can all of us. Operation ASHA spends an unbelievably low amount to treat a TB patient and give them back their life of dignity and self respect. It made us think that for little more than a price of a meal, a life was being saved at these centers. A little introspection is all that is needed, and each one of us can contribute to this cause. While carrying on our day to day jobs and earning a living, we could simultaneously devote some of our time to community work, and that will make all the difference. After all it’s not just the fight of those suffering from the disease but of all of us. If TB is to be eradicated, it will take more than just a few guidelines. It needs all of us to take care of our brethren, to go above the red tape and the constant excuses, and replace jargon with concrete actions. Once all of us decide to do our part, just as the members of Operation ASHA have done, it will not be long before TB control becomes a reality.

Radhika Batra is a first year medical student at Santosh Medical College and Viren Kaul is a Lancet Student Regional Advisor and an intern at the Sir Ganga Ram Hospital in Delhi in India.
radhikabatra15(at)yahoo.com
jishuviren(at)gmail.com

References

1. Govt of India (2006). TB India 2006, RNTCP Status report. DOTS for all- All for DOTS, Ministry of Health and Family Welfare, New Delhi

2. WHO Global TB Report 2009. WHO/HTM/TB/2009.411

3. Bennett D. E. et al, Am J Respir Crit Care Med. 2008 Feb

4. Tackling Tuberculosis; a Business Response, Feb 2008, World Economic Forum

5. Govt of India (2006). Annual report 2005-2006, Ministery of Health a Family Welfare, New Delhi

6. National Tuberculosis Institute, Bangalore(1974)Bull WHO, WHO 51:473-487

7. WHO (2000) Joint Tuberculosis Program Review, India, Feb 2000, Regional Office for South East Asia, New Delhi

8. TB India 2008, Ministry of Health and Family Welfare, Government of India, March 2008

9. WHO (2000) Research for Action, Understanding and Controlling Tuberculosis in India

10. WHO (1982) Tech.Rep. Ser.No.671

11. WHO (2004) – TB/HIV- A clinical manual, 2nd edition

12. WHO(2003) World Health Report 2003, Shaping the future

13. Saly S, Onozaki I, Ishikawa N., 2006, “Decentralized DOTS shortens delay to TB treatment significantly in Cambodia ”, Kekkaku, 2006 Jul;81(7):467-74

A recent WHO report is critical of internationally funded disease-specific health initiatives in Africa in particular for unintentionally taking resources away from national health systems (1). A Canadian medical student describes another shortfall of such initiatives and the inequity in health care delivery they can cause.

I couldn’t believe the thought that was going through my mind as I sat with Steven Banja and his mother. I was sick to my stomach, wishing a little boy and his mother had HIV.

It was 2006 and I was in Uganda as a pre-med student. While helping at a medical clinic in a remote village, I had befriended eleven year-old Steven. He was the most emaciated child I had ever seen and had been sick for some years according to his mother, an impoverished contract sugarcane cutter who had five other children. Even though he had so little energy that flies would settled on him undisturbed, you couldn’t help but see the spark of life Steven still had in him.

A chest x-ray subsequently revealed the reason why Steven was so malnourished. Copious white areas in his lungs were evidence of the tuberculosis that had slowly and relentlessly been taking hold of him. The doctor at the Children’s Hospital told me that, without treatment, the infection would soon overwhelm him. And because tuberculosis is so often partnered with HIV, there was a strong chance that he was also HIV positive.

I started processing the full context of Steven’s situation: Steven lived 30 km from the publicly funded hospital to which he or his mother would have to travel to receive his weekly regimen of anti-tuberculosis medication. His mother was a strong and loving person who worked hard to provide the bare essentials for her children. But it was impossible for her to make enough money to pay for the travel to town – even though the medication itself was free. For her to have to pursue this course of action was, in effect, a death sentence for her son.

Steven lived in an area that was unusual for its comprehensive care for those living with HIV/AIDS. The local foreign funded clinic provided free anti-retroviral therapy to anyone with AIDS. People could come and pick up their medication and receive counseling at the clinic, in addition to free meals and childcare. And if patients could not afford the trip or were too sick, counselors on motorbikes would deliver the medication to their village. Diagnostic testing and medications that may be required to fight the opportunistic infections, such as TB, were also free. Hence, if Steven was HIV positive, his anti-tuberculosis medication and anti-retroviral medication would be delivered to him and he would be able to access nourishing meals that the public system could not afford. With the success of anti-retroviral therapy, he could live a long life with treatment.

So it was that I sat with Steven and his mother awaiting the results of their HIV tests, hoping that he was positive. Having HIV would allow him access to life-saving anti-tuberculosis medication, to free meals, to diagnostic tests. Being HIV negative would mean that, despite free medication, Steven would remain untreated and almost certainly die.

Steven turned out to be HIV negative. Later that year, I heard from workers of an orphanage whom I asked to check in on Steven, that they had brought him to hospital in grave condition. Steven’s mother had unfortunately not been able to pick up his anti-tuberculosis medication.

Disease-specific global health initiatives (GHIs) have revolutionized healthcare delivery in Africa and saved countless lives. There can be no mistake about this. But Steven’s plight describes one of several serious limitations of this model of healthcare delivery. Indeed this is not news to the WHO that recognizes that in some cases “access to some targeted health services has expanded faster than access to other services not targeted by the GHIs, revealing a new dimension of health service inequity” (2). Steven’s case outlines a related but distinct scenario where two diseases, HIV and TB, both targeted by GHIs, provided differing access to care for the same disease.

The scope of the particular problem of unequal access to TB treatment in Uganda is potentially huge. Of the documented 109,000 new cases of TB per year, at least 3/5 are like Steven, not associated with HIV (3). However, the true scope remains impossible to determine, obscured by the lack of epidemiological data examining access to treatment for those TB patients with and without HIV.

As disease-specific GHIs expand their model of healthcare delivery, the type of inequity demonstrated by Steven’s case will likely become more pronounced. To address emerging inequities, the WHO has recently made several recommendations aimed at synergizing the interactions between GHIs and national healthcare systems (1). In particular the WHO recommends improving “alignment of planning processes and resource allocations among GHIs, and between GHIs and country health systems” which may mitigate this type of inequity. However, how this recommendation is operationalized remains to be seen.

The larger question is whether we accept Steven and others like him as an unavoidable casualty of an imperfect but overall effective model of healthcare delivery. Or do we strive to strengthen national healthcare systems in Africa that can provide comprehensive care no matter what diseases patients have so patients don’t find themselves in a circumstance like Steven’s, where HIV negative was a death sentence.

Steven was fortunate. His charm and love of life won over the staff at the orphanage who, with his mother’s blessing, took him in. Just last month a US family signed the papers to adopt him. Next month he will start a new life in Ohio.

Peter Orth is a 3rd year medical student at the University of British Columbia in Canada
peteorth(at)gmail.com

References

1. World Health Organization Maximizing Positive Synergies Collaborative Group. An assessment of interactions between global health initiatives and country health systems. The Lancet 2009 June 20; 373(9681):2137-2169.

2. World Health Organization [Online]. 2009 June 15 [cited 2009 July 19]; Available from: URL:http://www.who.int/healthsystems/New-approach-leaflet-ENv2-p4p.pdf

3. WHO REPORT 2009 Global Tuberculosis Control [Online]. 2009 March 24 [cited 2009 October 4]; Available from: URL:http://apps.who.int/globalatlas/predefinedReports/TB/PDF_Files/uga.pdf

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