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

Introduction

Poliomyelitis is an acute viral infection caused by RNA virus of the family picornaviridae (1). It is primarily infection of the alimentary tract but may affect the CNS and in about 1% of cases may lead to paralysis and death (2). It usually affects children less than 5 years of age. Poliomyelitis was known to occur in pre-historic times and was seen in Egyptian mummies and paintings dating 3700 BC (3).

There are 3 serotypes of the wild polio virus – 1, 2, and 3 (3). Of all cases between January 2007 and June 2008, serotype 1 and 3 were detected in fecal samples of the AFP cases. No cases ascribed to serotype 2 has been detected anywhere in the world since 1999 (4,7).

Risk Assessment and Problem Statement

In the pre-vaccination era polio ravaged all countries of the world and no region was free of it. Since 1954, the vaccines were used extensively ushering in the vaccination era (5). This era in time saw implementation of some landmark eradication strategies. These measures on a global level helped in eliminating the disease from countries which successfully implemented their health policies. The polio endemic countries as of August 2008 were India, Afghanistan, Pakistan and Nigeria (6). Twenty five other countries reported cases of imported virus which were genetically traced back to those found in India or Nigeria (6).

During 2007, a total of 1,387 (1,315 were Wild Polio Viruses) confirmed cases were reported whereas in 2008 up to the month of November, a total of 1,449 WPV cases were recorded, worldwide (7). In India, while 874 cases were recoded in 2007, the number dropped to 532 in the year of 2008 upto the month of November. The majority of these cases hail from the states of UP and Bihar (7). It is obvious the situation has reached a stalemate with the number of new cases almost constant for some years and in some countries polio has even managed to stage a comeback, such as seen in the strife-torn Nigeria (9).

The Logic Behind Polio Eradication

Poliomyelitis was believed to be eradicable because man is the only host and a long term carrier state is not known to occur. The poliovirus is also relatively easy to detect because it causes a distinct, although not diagnostic, clinical entity—namely acute flaccid paralysis (AFP)— it is readily identifiable as a causative agent of the disease by simple laboratory tests, and, most importantly, it is easily controlled in endemic and epidemic situations by a widely available and affordable vaccine that leads to lifelong immunity (8). The vaccine is ideally suited for eradication programs as it interrupts the transmission of the WPV by multiplying the in the intestine. It mimics the natural history of infection of the WPV and can also be transmitted through a recently vaccinated child to close contacts around him who are not immunized. The half life of the excreted virus is 48 hours in the sewage and spread can occur in that period.

After the initial euphoria of success with the smallpox eradication, polio became the next logical vaccine-preventable disease to be targeted for eradication – both because of the morbidity caused by the disease and the theoretical eradication potential of the vaccine. Launched in October 1988 by the 41st World Health Assembly (WHA Resolution 41.28), the Global Polio Eradication Initiative aimed to eradicate poliomyelitis from the planet by the year 2000. It is the largest international public health initiative ever undertaken, costing several billion dollars and immunizing billions of children worldwide. It has also been mired in controversy almost since its outset (9).

The initial target date, 2000, unfortunately came and went without eradication in sight. So too did the next scheduled date of 2005 (a target set by Rotary International, the most important non-governmental supporter of the Global Polio Eradication Initiative). As yet no future target date has been set (9).

What is Being Done? – The WHO and Indian Perspective

The Global Polio Eradication Initiative has been spearheaded by the World Health Organization (WHO), Rotary International, and the US Centers for Disease Control and Prevention (CDC) and UNICEF and it aimed at polio eradication by 2000 (6).

There are four core strategies to stop transmission of the wild poliovirus in areas that are affected by the disease or considered at high risk of re-infection (6):

1. High infant immunization coverage with four doses of oral poliovirus vaccine (OPV) in the first year of life.

2. Supplementary doses of OPV to all children under five years of age during Pulse Polio Sessions.

3. Surveillance for wild poliovirus through reporting and laboratory testing of all acute flaccid paralysis (AFP) cases among children under fifteen years of age.

4. Targeted “mop-up” campaigns once wild poliovirus transmission is limited to a specific focal area.

The strategy, as with smallpox, aims to achieve maximum vaccine coverage to terminate the circulation of the virus in the population coupled with a reliable surveillance tool for the detection of remaining pockets of virus circulation and to monitor progress. Herd immunity is achieved with high routine vaccine coverage (at least 90% for all 3 doses) (10).

This primary strategy is supported by mass immunization programmes (immunising all infants less than 5 years of age independently of the routine immunisation programme on a single day or few days) – this is known as the Pulse Polio Programme in India (11). Most endemic regions and countries follow the MIPs with Mop Up programmes which locate all the cases missed during the MIP rounds. The viral spread is measured in terms of the Acute Flaccid Paralysis Rate in children less than 15 years of age. In the eventuality of a case detection, the index case is surrounded with an immunization ring to restrict the spread of the wild virus (12).

Surveillance forms a major component of the eradication campaign. A laboratory network co-ordinated by the WHO and consisting of over 125 laboratories throughout the world has been established, and is organized in three levels–national laboratories for virus isolation and preliminary characterization, regional reference laboratories for confirmation and more specialized testing and specialist laboratories (12).

Why are These Measures Unsuccessful?

While it is a general consensus that the apparent plateau in the eradication campaign is multifactorial in causation, it is a known fact that different factors are of relative importance in different countries. Arguably, one of the most important pull downs is campaign fatigue that has set into the GPEI’s implementation. This is almost universal in all the endemic nations, especially India and Nigeria (9).

In Pakistan, it as been attributed to outright refusal by parents and shortage of female health workers. The situation is made worse by the security situation in some regions such as the Swat valley where the vaccinators are not able to even reach. These conflict ridden areas are reporting an increasing number of new polio cases (13).

In a calamitous setback in mid-2003, Nigeria’s northern states halted the vaccination campaign for a year after politically fuelled rumors swept the region that the vaccine contained the AIDS virus or was part of a Western plot to sterilize Muslim girls. Within a couple of years, 18 once polio-free countries have had outbreaks traceable to Nigeria. Though most have since been tamed, Indonesia and Nigeria itself remain major worries (14,15).

The situation is similarly bleak in India, a country which is tantalizingly close to eradicating the disease. The enormous population load, dense living conditions, an inadequate public health sector and illiteracy have acted as the banes of the eradication drive. Health workers have repeatedly reported being turned away from homes by mothers who felt that the government was not doing enough for their children (14). On the other hand, Afghanistan continued to suffer from the disease’s march during the recent war on its soil, with civic amenities and health services falling to a dismal low. Ongoing conflicts have had a major impact on the polio eradication in the endemic countries, with immunization teams being hampered from reaching out. In a number of situations the vaccines have been spoilt, whole stocks in total because of the improper storage facilities.

The situation in the Uttar Pradesh state in India has worsened in recent time mainly because of the falling vaccination cover and in Bihar because of increasing parental resistance. This has been noticed despite exemplary efforts on part of the government and the local authorities to step up the campaign (16). Even more problematic here has been the difficulty in achieving successful immunisation, despite multiple rounds of vaccination, because of very high population density, crowding and high levels of diarrhoeal disease interfering with the immunogenicity of the oral polio vaccine (17).

In recent times, probably the most worrying of all problems in polio control has been the poor migration control between endemic and non endemic regions. The stark example was the reporting of a case of polio from Karnataka state in India, which had reported no case of the disease in nearly three years. The case was traced back to a contact in Uttar Pradesh state putting in the spotlight on as to how important it is to have proper migration controls in place.

Finally, in contrast to smallpox, what complicates polio eradication is the much greater difficulty in recognition of infection despite the occurence of AFP. The great majority (>99%) of infections are asymptomatic, greatly complicating surveillance and monitoring (9).

New Indian Initiatives

Even though efforts for eradication has been given up with respect to most diseases (19), especially tuberculosis and leprosy, the goal of the National Polio Surveillance Project, India, stays firmly on the lines of the international Polio Eradication Initiative – and that is to completely eradicate polio so that “no child will ever again know the crippling effects of polio.”(18).

The collaboration has set the following goals to make sure that the eradication drive succeeds (20):

1. Maintaining the Acute Flaccid Paralysis detection target at >1 case per 100,000 population.

2. Maintaining the completeness and time accountability of the AFP reports impeccably at 90% and 80% respectively.

3. Investigating the reported AFP cases within 48 hours in >80% cases.

4. Collection of stool samples from reported cases in < 14 days in more than 80% cases.

5. Follow-up exam of the reported cases at least 60 days after paralysis onset to verify the presence of residual paralysis or weakness (Target > 80%).

6. Confirming the arrival of specimens at the national laboratory < 3 days of being sent (Target > 80%)

7. Confirming the specimens arriving at the laboratory in “good condition” (Target > 80%)

These measures are in addition of the four main ones defined earlier.

Conclusion

A lot has changed since the world leaders in health decided to eradicate Poliomyelitis from the world. The achievable target was pushed back out of reach due to a number of practical problems. With the Polio Eradication Initiative working at full swing in the nations with the residual polio cases, the eradication of this debilating disease is not far away but a few challenges remain to be overcome before this can occur.

Viren Kaul is a TLS RA and final year student at Sir Ganga Ram Hospital in Delhi, India
Vindhya Palled is a medical student at the Karnataka Institute of Medical Sciences in Hubli, India
Jishu Kaul is a medical student at Dayanand Medical College in Ludhiana, India
jishuviren(at)gmail.com

References

1. Wikipedia – Poliovirus: http://en.wikipedia.org/wiki/Poliovirus

2. Encyclopedia Britannica: http://www.britannica.com/EBchecked/topic/467378/polio

3. eMedicine – Poliomyelitis, S Vidyadhara et al – http://emedicine.medscape.com/article/1259213-overview

4. Park and Park text book of preventive and social medicine – Bhanot publications.

5. Wikipedia – Polio Vaccine: http://en.wikipedia.org/wiki/Polio_vaccine

6. WHO: Programmes and Projects: Media Center: Poliomyelitis: http://www.who.int/mediacentre/factsheets/fs114/en/index.html

7. WHO annual bulletins 2007 and 2008.

8. The Lancet Infectious Diseases, doi:10.1016/S1473-3099(04)00999-5.

9. Eradication of disease – the case study of polio, South African Medical Journal, Nov 2007, Barry D. Schoub. (http://findarticles.com/p/articles/mi_6869/is_11_97/ai_n28533884/)

10. Data courtesy: GPEI. (http://www.polioeradication.org/content/fixed/national.shtml)

11. Pulse Polio Immunization Campaign, Government of India (http://www.health.mp.gov.in/ppip.HTM)

12. National Polio Surveillance Project, a Government of India and WHO collaboration. (http://www.npspindia.org/Surveillance%20Strategy.asp)

13. OneWorld South Asia – Insecurity hampering polio eradication in Pakistan – October 10th, 2008. (http://southasia.oneworld.net/todaysheadlines/insecurity-hampering-polio-eradication-in-pakistan)

14. The New York Times – Rumor, Fear and Fatigue Hinder Final Push to End Polio – March 20th, 2006. (http://www.nytimes.com/2006/03/20/international/asia/20polio.html?pagewanted=print)

15. Jegede AS. What led to the Nigerian boycott of the polio vaccination campaign? PLoS Medicine 2007; 4: 0001-0006.

16. Wild poliovirus weekly update. Global Polio Eradication Initiative. 30 May 2007. http:// www.polioeradication.org/casecount.asp (last accessed 4 June 2007).

17. John TJ, Shah NK, Thacker N. Indian Academy of Pediatrics and Polio Eradication in India. Indian Pediatr 2006; 43: 765-768.

18. National Polio Surveillance Project – A government of India – WHO collaboration – http://www.npspindia.org/index.asp

19. http://www.sciencemag.org/cgi/content/full/312/5775/852

20. NPSP, India – http://www.npspindia.org/WHO%20indicators.asp – Eradication targets.

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

Cryptococcal meningitis (CM) is an invasive fungal infection caused by Cryptococcus neoformans and predominantly affects immuno-compromised individuals such as those with advanced HIV infection. It is an AIDS-defining illness (World Health Organization Clinical Stage 4) in up to 60% of HIV-infected patients and more commonly occurs in individuals with CD4+ T-lymphocyte <100/microL. (1) Patients often present with fever, headache, malaise or more advanced signs such as visual changes, altered mental status, and cranial nerve palsies due to increased intracranial pressure. Although the incidence of CM began decreasing in the highly active anti-retroviral therapy (HAART) era, cryptococcosis continues to be a major cause of mortality in low-income countries, particularly sub-Saharan Africa (SSA). (2)

In spite of its impact and burden, cryptococcal infection is grossly underrepresented on the global health agenda. We discuss the global burden of CM with particular focus on Uganda and describe the gap of nurse knowledge of CM in one Ugandan setting and how it might be filled. We conclude with a discussion on solutions for improving health care worker knowledge.

Burden of Cryptococcal Meningitis

In a recent literature review researchers estimated 958,000 CM cases yearly among HIV-infected people with more than 624,000 deaths with 504,000 of those deaths occurring in SSA. (3) Although tuberculosis causes more total deaths per year worldwide, death rates in studies of CM in Malawi, Zimbabwe, and Central African Republic reported CM accounting for more deaths than tuberculosis. (4-6) In a prospective cohort study in Zimbabwe, for example, 45% of meningitis diagnoses in HIV-positive persons were attributed to CM compared with 12% who were diagnosed with tubercular meningitis. (7)

Despite its beneficial impact on the health and overall longevity of people living with HIV/AIDS, the introduction of HAART has not decreased CM rates uniformly around the world. HIV-positive persons in Uganda experience a higher rate of cryptococcal infection in the HAART era compared to their counterparts in North America. (8-11) In two Ugandan cohort studies, 20-30% of people with advanced HIV died of CM. (12-13) Also in a recent study in Uganda, 14-day survival rates improved from 49% to 80% with HAART initiation beginning after CM diagnosis. (14) After six months, however, only 41% remained alive and receiving HAART. The authors of this particular study hypothesized that a difference in CM treatment, as well as immune reconstitution, contributed to the differences between North American and Ugandan fatality rates from CM.

HAART initiation can contribute to continued high levels of CM through immune reconstitution inflammatory syndrome (IRIS), which has been reported in 6-30% of patients with CM after starting antiretroviral therapy. (15-16) Considered a diagnosis of exclusion, risk factors for cryptococcal IRIS include high baseline serum cryptococcal antigen (sCRAG) titers, disseminated disease, and ART within one month of commencing antifungal therapy. (17-18) More research and better treatment modalities are necessary to reduce CM burdens in SSA that have been achieved in North America.

Nursing Knowledge of CM in Uganda

Besides addressing IRIS and possible changes in anti-fungal therapy in SSA, health care worker knowledge may influence the mortality rate from CM in HIV-infected persons. One of the authors (HS) researched health care worker knowledge in Masaka Regional Referral Hospital in Masaka, Uganda in 2006. (19) According to hospital records in 2004 and 2005, Masaka Hospital accounted for 32-42.6% of CM diagnoses in Masaka District, likely making it the hospital confronting the greatest CM burden in Masaka District. Nurses who enrolled in the study answered questions examining awareness, transmission, symptoms, diagnosis, and treatment of CM as well as nursing interventions for it.

Of 24 nurses surveyed, 12.5% were knowledgeable about the transmission of CM and 29.2% met criteria for “good knowledge” of CM with 33.3% having “fair knowledge.” (The small sample size of nurses resulted from limited study funding and a small nursing staff pool from which to survey.) Nurses with less than 2 years of working experience were found to be knowledgeable (defined as identifying three of more signs of CM) of signs and symptoms of CM (100%) compared to nurses with 2-5 years (20%) or greater than 5 years experience (17.6%), possibly attributable to recent educational campaigns towards awareness of CM. When looking at nursing degree status, registered and intern nurses had greater knowledge of possible CM nursing interventions compared to enrolled nurses and nursing aids/assistants. Nurses who did not know any diagnostic methods of CM totaled 20.8%. Of interviewed nurses, 100% were knowledgeable about treatment for CM, though only 22.6% identified amphotericin B, the preferred treatment modality.

Nurses can play a crucial role in promoting awareness of CM in a resource-constrained environment such as Uganda where they have more frequent contact with patients than physicians. Although physicians are traditionally responsible for the direction of care in Ugandan cases, physician shortage and the high patient-to-nurse ratio (17.5:1) in Masaka Hospital necessitates increased sharing of responsibilities. Nurse knowledge of CM signs and symptoms, for example, is one piece of the puzzle for better patient care. Earlier recognition of CM-related signs and symptoms and advocacy for optimal patient therapy may reduce CM morbidity.

Solutions and Issues in Resource-Constrained Environments

We believe the same solutions for resource-rich environments are needed in resource-constrained settings. Malaria, different forms of meningitis, and other illnesses that also present similarly to CM, may be differentiated earlier from CM with improved nurse and other health care professional education. Continuing the expansion of HAART availability is an important start for decreasing deaths from CM. Earlier diagnosis of HIV infection and earlier HAART initiation may help prevent CM morbidity and mortality. (20)

As different studies have shown, increased mortality from CM still exists in certain populations despite HAART, especially in SSA. Therefore, other solutions must be considered in parallel. For example, one group of physicians developed a simple algorithm for medical management of central nervous system infections for use in Uganda. (21) Such a tool may suffice but the need for continuing medical education on CM should improve patient care and hopefully patient outcomes.

Cryptococcus screening in high-risk individuals may decrease the mortality of CM. The use of sCRAG in high-risk persons with HIV may be both life-saving and cost-effective. (22-23) By identifying persons with elevated sCRAG and with the provision of fluconazole prophylaxis, the CM burden worldwide may be decreased in individuals who have failed or need ART in areas with high incidence of cryptococcal disease. (24) Cost barriers currently prohibit a larger rollout of therapy.

Some of our colleagues in Uganda have reported a cultural tendency to reject diagnostic and therapeutic lumbar puncture (LP), an important tool in the care of CM patients. Increased health care worker training in CM patient sensitization of procedures, identification, and treatment may provide a way forward by increasing patient acceptability of LP. More research evaluating patient attitudes about LP use is needed. In the meantime, the use of sCRAG remains as an important alternative.

Addressing broader health sector level issues is also crucial for the improved management of CM. The Masaka Hospital study included a focus group with nurses and caretakers. They recommended and stressed the need to increase nursing staff, provide cryptococcal infection sensitization and education, the need for increased anti-fungal therapy, special wards for CM patients, upgraded hospital equipment, more doctors, and refresher courses for HIV/AIDS management. In addition, as far we know, little research has been done evaluating other health care workers’ knowledge of CM.

The same issues that impact care of other diseases – health workforce size, continuing medical education, and accessible medical technologies/therapies – apply to CM equally. While advocating for improvements in those areas, health care worker-driven approaches to increase health worker knowledge of CM offer an opportunity to improve patient care quickly.

Justin List is a 4th year medical student at the Loyola University in Chicago USA.
jlist@lumc.edu

Hassard Sempeera is a Home Health Visitor at Makerere-Case Western Reserve University Research Collaboration in Kampala, Uganda
hassardsempra@gmail.com

Acknowledgement: The authors wish to thank would like to thank Hassard Sempeera a Home Health Visitor at Makerere University in Uganda as well as Professor Dr. Harriet Mayanja-Kizza and Dr. Glen Drobot for their helpful comments. This work was supported in part by the Fogarty International Center, National Institutes of Health (Grant #R24TW007988, Fogarty International Clinical Research Scholars Support Center at Vanderbilt-American Association of Medical Colleges).

References

(1) Cox GM, Perfect JR. AIDS-associated cryptococcal meningoencephalitis. In: UpToDate, Bartlett JG, McGovern BH (Eds), UpToDate, Waltham, MA, 2009.

(2) Jarvis JN, Harrison TS. HIV-associated cryptococcal meningitis. AIDS 2007 21:2119-2129.

(3) Smith M. ICAAC-IDSA: Cryptococcus major killer among those with HIV. [online] 2008. [cited 2009] http://www.eatg.org/eatg/Global-HIV-News/Treatment/ICAAC-IDSA-Cryptococcus-major-killer-among-those-with-HIV

(4) Gordon SB et al. Bacterial meningitis in Malawian adults: pneumococcal disease is common, severe, and seasonal. Clin Infect Dis 2000 31:53-57.

(5) Bekondi C et al. Primary and opportunistic pathogens associated with meningitis in Bangui, Central African Republic, in relation to human immunodeficiency virus serostatus. Int J Infect Dis 2006 10:387-395.

(6) Hakim JG. Impact of HIV infection on meningitis in Harare, Zimbabwe: a prospective study of 406 predominantly adult patients. AIDS 2000 14:1401-1407.

(7) Ibid.

(8) Chuck SL, Sande MA. Infection with Cryptococcus neoformans in the acquired immunodeficiency syndrome. N Engl J Med 1989 321:794-9.

(9) French N et al. Cryptococcal infection in a cohort of HIV-1-infected Ugandan adults. AIDS 2002 16:1031-1038.

(10) Sacktor N et al. HIV-associated neurologic diseases incidence changes: Multicenter AIDS cohort Study, 1990-1998. Neurology 2001 56:257-60.

(11) Mirza SA et al. The changing epidemiology of cryptococcosis: an update from population-based active surveillance in 2 large metropolitan areas, 1992-2000. Clin Infect Dis 2003 36:652-662.

(12) French N et al. Cryptococcal infection in a cohort of HIV-1-infected Ugandan adults. AIDS 2002 16:1031-1038.

(13) Lara-Peredo O et al. Cryptococcal infection in an HIV-positive Ugandan population. J Infect 2000 41:195.

(14) Kambuga A et al. Outcomes of Cryptococcal Meningitis in Uganda Before and After the Availability of Highly Active Antiretroviral Therapy. Clin Infect Dis 2008 46:1694-1701.

(15) Shelbourne SA III et al. The role of immune reconstitution inflammatory syndrome in AIDS-related Cryptococcus neoformans disease in the era of highly active antiretroviral therapy. Clin Infect Dis 2005 40:1049-1052.

(16) Lortholary O et al. Incidence and risk factors of immune reconstitution inflammatory syndrome complicating HIV-associated cryptococcosis in France. AIDS 2005 19:1043-1049.

(17) Ibid.

(18) Shelbourne SA III et al. The role of immune reconstitution inflammatory syndrome in AIDS-related Cryptococcus neoformans disease in the era of highly active antiretroviral therapy. Clin Infect Dis 2005 40:1049-1052.

(19) Sempeera H. Challenges of Nursing Patients with Cryptococcal Meningitis at Masaka Hospital. 2006. Unpublished.

(20) Lawn SD et al. Early mortality among adults accessing antiretroviral treatment programmes in sub-Saharan Africa. AIDS 2008 22:1897-1908.

(21) Trachtenberg JD et al. The medical management of central nervous system infections in Uganda and the potential impact of an algorithm-based approach to improve outcomes. Intl J Infect Dis 2007 11:524-530.

(22) Bicanic T et al. Fungal burden, early fungicidal activity, and outcome in cryptococcal meningitis in antiretroviral-naïve or –experienced patients treated with amphotericin B or fluconazole. Clin Infect Dis 2007 45:76-80.

(23) Tassie JM et al. Systematic screening of cryptococcal antigenemia in HIV-positive adults in Uganda. J Acquir Immune Defic Syndr 2003 33:411-412.

(24) Chetchotisakd P et al. A multicentre, randomized, double-blind, placebo-controlled trial of primary cryptococcal meningitis prophylaxis in HIV-infected patients with severe immune deficiency. HIV Med 2004 5:140-143.

This article has been written as part of the partnership between The Lancet Student and Asian Medical Students’ Association International. The 30th Asian Medical Students’ Conference will be held next week in Taiwan on the theme of ‘Stigmatised Illnesses: To understand, to accept, and to change’. We look forward to hearing about the conference, look out for the conference blog and podcast next week! Alistair Hustig, the Secretary of Academcis – Asian Medical Students’ Association International, has written this fantastic article on the theme.

‘Stamping out Mental Health Stigma’, NHS.

Stigma. This one word often represents the most crucial element effecting people living with a wide range of illnesses. It negatively impacts efforts to treat and prevent disease, and adversely affects individuals’ quality of life. Many illnesses have a high prevalence of stigma including mental illnesses, cancer, leprosy, and sexually transmitted diseases. However, the type of stigma varies with different conditions. This article highlights some causes and differences of stigma associated with mental health and HIV, as well as successful strategies of reducing its impact.

Definitions of stigma encompass social identity (deviance from what is normal), power discrepancies (that allow discrimination), and discrediting attributes that result in devaluation of people living with illnesses, such as those above (1,2,3). This often manifests itself in an external sense as discrimination, hatred, intolerance, rejection, and exclusion. However what is often under-recognised is the internal aspect of stigma. Internal manifestations can include self-loathing, shame, and self-blame, all of which are preyed upon when someone stigmatises (3,4). Stigmatisation can also extend to family, friends, and even to institutions and clinics which themselves perpetuate stigma. As a result anyone associating with patients, or visiting centres, can be dragged into the net of stigma.

People living with Mental Illness
People who have depression, schizophrenia, and other mental illnesses, commonly report stigma from both community and health professionals. Depression is a leading cause of disability effecting 121 million people worldwide (5). Schizophrenia affects millions of people. Of these, only 25% of those with depression, and 50% of those with schizophrenia who are in need of treatment are receiving appropriate therapy (5). These figures suggest that stigma, at least in part, may be having an affect on treatment of mental illness. The perception of depression as a weakness rather than an illness (6); or people with depression are dangerous, and ‘schizophrenics’ are violent (6,7) remains embedded in public opinion. These views are less shared with other common illnesses for example cardiovascular disease. Unlike mental illnesses, cardiovascular disease is less stigmatised at least in part because the aetiology, pathophysiology, and successful treatments are well known. The fear of the unknown may therefore contribute to stigma being ingrained in an illness. As a result people with the illness are afraid of disclosing to family and friends, and do not seek help where it would be of benefit (6). Health practitioners, even those in the field of mental health can also stigmatise through intensive use of language and labelling. Some are more empathic and understanding of the nature of the illnesses, but some practitioners continue to define their patient by their illness. The difference in language is powerful – a ‘schizophrenic’, whose behaviour defines them, versus a ‘person living with schizophrenia’, whose illness causes altered behaviour (7). This labelling may plague the patient as a ‘life sentence’ (7) reducing self-esteem, withdrawing social opportunities, and creating ongoing employment difficulties (8), ultimately ruining any chance of normality.

People living with HIV
It is estimated that around 33 million people worldwide are infected with HIV, with the majority in low- and middle-income countries (9). Of these, only 3 million were receiving appropriate anti-retroviral therapy as at December 2007 (9). Again one of the biggest issues preventing uptake is stigma. However, the stigma signature associated with people living with HIV is different to that explained for mental illness. Bos and colleauges (10) propose a model for stigmatisation of people living with HIV. They describe how perceived contagiousness (everyday contact, not just sex), perceived seriousness (life-threatening), personal responsibility (unsafe sex) and norm-violating behaviour (e.g. male-to-male sex, and intravenous drug use) contribute to increase fear and anger while decreasing pity for people living with the disease. Stigma also surrounds certain groups at increased risk, such as homosexuals, intravenous drug users, and sex-workers. This further stigmatises people living with HIV leading to amplified discrimination and negative social responses. As a result, people living with HIV have a decreased quality of life and are less likely to seek testing, treatment, and counselling, or disclose their status to potential support providers. This can result in advanced presentations with high viral loads, low CD4 counts, and opportunistic infections.

Strategies for Reducing Stigma
The need to address stigma is paramount in order to reduce prevalence and thus burden of illness (e.g. curbing the HIV epidemic), and increase treatment uptake. For mental illnesses, in particular depression, Barney and colleagues (6) suggest that blaming, avoiding, and labelling people living with mental illnesses must be addressed. Accurate knowledge and portrayals of survival and recovery, as well as the true risk to the community for these health conditions needs to be expressed by all means possible, especially the media.

Public disclosure of HIV status has been shown to have a beneficial impact to both the individual and the surrounding community (11). Individuals are often very scared and describe this as the most difficult and dangerous thing to do. Post-disclosure they feel empowered, released from a heavy secret, and less isolated and withdrawn, taking back control of their lives (11). To help facilitate this appropriate training and support needs to be given before disclosing to prepare for potential negative reactions from community members. However, public speaking regarding one’s positive living helps to make the community more aware and dispel myths around HIV, thus reducing stigma. This is echoed by studies involving public speaking by people living with HIV (11) and mental illness (12), which have shown improved attitudes among high school students to those living with the illness. Uniting all people with stigmatised illness would provide a voice that would be far too loud to ignore.

Access to relevant treatment that communities understand is effective and essential in any stigma reduction programme. The case of universal access to HIV therapy in Botswana (which has the 2nd highest prevalence), implemented in 2002, provides clear evidence of reducing stigma (13). Wolfe and colleagues (13) demonstrated pre- and post-implementation that only 31% of people had disclosed positive HIV status to family, and 5% to friends in 2001, compared with 90% and 55% respectively in 2004. Other examples of reduced stigmatising attitudes include an increase in the number of people that would care for a person living with HIV, accept them as a teacher and buy food from a shopkeeper with HIV.

Conclusion
Stigma and its consequences affect the course of illness for many millions of people worldwide. It provides an enormous barrier to all attempts to help people living with stigmatised illnesses. Stigma affects all, it endures, and it compromises survival and recovery of those most in need. We must strive to find new ways to abolish stigma, and thereby allow access to treatment and empowering positive living.

Alistair Hustig, hust0007@flinders.edu.au
Secretary of Academics – Asian Medical Students’ Association International
Australian Medical Students’ Association Councillor
Graduate Entry Medical Programme Year II – Flinders University, Adelaide, South Australia
Bachelor of Medical Science – Flinders University, Adelaide, South Australia

References
1. Joint United Nations Programme on HIV/AIDS (UNAIDS). Reducing HIV Stigma and Discrimination: a critical part of national AIDS programmes. [Online]. 2007 [accessed 20 June 2009]. http://data.unaids.org/pub/Report/2008/JC1521_stigmatisation_en.pdf.

2. Reidpath DD, Chan KY, Gifford SM, Allotey P. ‘He hath the French pox’: stigma, social value and social exclusion. Sociology of Health & Illness 2005; 27(4): pp. 468-489.

3. Courwright AM. Justice, Stigma, and the New Epidemiology of Health Disparities. Bioethics 2009; 23(2): pp. 90–96.

4. Cameron E. Witness to AIDS. Cape Town: Tafelberg Publishers Limited; 2005.

5. World Health Organization. Mental Health: Disorders Management. [Online]. 2009 [accessed: 21 June 2009]. www.who.int/mental_health/management/en/.

6. Barney LJ, Griffiths KM, Christensen H, Jorm AF. Exploring the nature of stigmatising beliefs about depression and help-seeking: Implications for reducing stigma. BMC Public Health 2009; 9(61).

7. Flanagan EH, Miller R, Davidson L. ‘‘Unfortunately, We Treat the Chart:’’ Sources of Stigma in Mental Health Settings. The Psychiatric Quarterly 2009; 80: pp. 55-64.

8. Corrigan P. How Stigma Interferes with Mental Health Care. American Psychologist 2004; 59(7): pp. 614-625.

9. Joint United Nations Programme on HIV/AIDS (UNAIDS). Report on the global HIV/AIDS epidemic. [Online]. 2008 [accessed 20 June 2009]. http://www.unaids.org/en/KnowledgeCentre/HIVData/GlobalReport/2008/2008_Global_report.asp

10. Bos AER, Schaalma HP, Pryor JB. Reducing AIDS-related stigma in developing countries: The importance of theory- and evidence-based interventions. Psychology, Health & Medicine 2008; 13(4): pp. 450-460.

11. Paxton S. The paradox of public HIV disclosure. AIDS Care 2002; 14(4): pp. 559-567.

12. Spagnolo AB, Murphy AA, Librera LA. Reducing Stigma by Meeting and Learning from People with Mental Illness. Psychiatric Rehabilitation Journal 2008; 31(3): pp. 186-193.

13. Wolfe WR, Weiser SD, Leiter K, Steward WT, Percy-de Korte F, Phaladze N, Iacopino V, Heisler M. The Impact of Universal Access to Antiretroviral Therapy on HIV Stigma in Botswana. American Journal of Public Health, 2008; 98(10): pp. 1865-71.

 Viren Kaul  and Vishala Mishra discuss the need for changes in the social understanding of HIV/AIDS in India in order to effectively combat the epidemic.

An anesthesiologist returned home one day. And unlike most other days, she was disturbed and in anguish. Talking to her son sometime later that evening she let out her pent up emotions -pain, annoyance, hurt and disappointment- words wouldn’t come out of her mouth and it was clear that she had had a harrowing experience that day. She worked at a typical Indian governmental health set-up with a decent- sized patient load. On being constantly prodded by her son, the incoherent stream of words began to flow. It was as though she was reliving the entire experience, which weighed heavily on her mind.

She told her son of a woman who had come to the hospital triage with a threatened abortion. As the doctors hastened to shift her to the OT, the attendant gave a history of multiple pregnancy losses in the past. The present pregnancy, seven months along, was precious to the woman, who was childless, and the attendant begged the doctors to save the child. Shortly, as the doctors gloved up, an on-the-spot HIV test came back positive the woman was found to be HIV positive by a rapid test. As the doctors managed to stall the abortion and put her on treatment, the focus shifted to how she had acquired the infection.

A married woman of eight years, the patient was interrogated in detail for any means by which she might have acquired the deadly virus. With all known routes of transmission ruled out and the lady pledging to not having been unfaithful, the spot light fell on the obvious source: her husband. On being summoned to attend the HIV counseling service the next day, the husband, on much cajoling, revealed that he had had the virus for more than a few months and knew this. He told the counselors that he worked at a call center and had a night shift, and that the job and the mounting pressure on him had taken its toll and he had turned to engaging in multiple unprotected  sexual encounters at work. Most disappointing of this tale was the fact that the man was an engineering graduate from a well known engineering college in India. And with this the counselors realized that the reckless man had managed to knowingly endanger three lives – that of his “faithful” wife, their unborn child’s and not the least his own.

India currently has had many awareness and education campaigns to raise the knowledge levels of HIV amongst its population. The government has even established the National AIDS Research Institute to deal with all aspects to HIV spread and treatment in India, including the social initiatives in this regard. The amount of health budget allocated to HIV related issues is also phenomenal. So the question arises – why is it that with both general and specific programmes targeted at high risk groups, unprecedented use of mass media, and the huge setup of Anti-Retroviral Treatment centers and Voluntary Counseling and Treatment Centers, do we have such unfortunate cases coming up? Many, like the anesthetist, blame a basic lack of morals as the reason to the increasing prevalence of HIV pandemic in India. However, is this the only answer?

Before we attempt to answer the question, here are a few facts -– A recent study by Dr. B. L. Nagda on AIDS awareness in an Indian slum attempted to shed light on some of these questions. The study revealed that a large number of people are not aware of how HIV/AIDS is transmitted. Large numbers of women are unaware of the risk of mother- to-child transmission. In addition, the very low proportion of respondents receiving information from a health worker or teacher points to a serious deficiency in HIV education. These facts have been highlighted in a study – Awareness about AIDS in slum dwellers of Udaipur district in India. (1)

Clearly, as can be seen from the case study, education, per-se is insufficient, for, the HIV infection rate has remained stubbornly high, despite the massive efforts taken by the government and NGOs. Experience over years has pointed to a well established fact that indicated that the public needs not only information, but also need to be enlightened about the social, economic, emotional and mental burden the disease carries besides its 100% fatality rate. They need to understand the fact that dealing with the virus has responsibilities and this is possible only when such information is part of the general programme.

What can also be safely inferred from the above discussion is that with the change in the dynamics of AIDS pandemic, and the changing social fabric; people’s need for information has also changed. Maybe, a strategy based on empowering people to be able to negotiate safer sex with their partners, and attempting to revamp the societal perceptions of sexuality, and urgently addressing the gender imbalances prevalent will serve to bridge the now deep chasm between “hearing slogans” and “effecting a positive behavioral change”. People need to be involved in the education process- and explore actively what the newly gained knowledge- in terms of the socio-economic, and emotional ramifications of the disease- means for them on a personal level.

Educational programmes have to be restructured to convey mixed messages- while on the one hand the grave risks and dangers of transmissibility of HIV by casual sexual contact or sharing of needles needs to be emphasized, on the other hand the insignificant risk of being infected by the virus through breathing “contaminated air”, “or touching the sweaty hands of an infected patient” has to be equally strongly and reassuringly emphasized.

The solution, therefore, does not lie in only distributing condoms, setting up counseling and drug-dispensing units, putting ads in the mass media, making policies, setting up help groups and other such initiatives, but in a very basic method – and arguably the only effective method – bringing about life-style change amongst people.

That would mean, for example, not only encouraging high-risk groups like truck drivers to use condoms and make use of the HAART drugs available, but finding out why in the first place they engage in such activities. Reaching out to the most basic level from where such high risk tendencies arise is the surest way of making certain that people utilize all the services that the governments and the NGOs are providing. In the absence of such pre-service utilization behavior priming, any well-intentioned effort will not have their desired or potential result.

Sadly, the attention given to anticipating the long-term consequences of a health policy decisions is inversely proportional to the perceived short-term urgency of the situation in which the decisions are made.

The change in people’s thinking patterns needs to be initiated at the grass roots level. The social pressures, work pressures, domestic problems, and economical issues need to be addressed as a priority before people can accept the measures being doled out now. The initiatives need to be specific to the situations of the public. This would include such initiatives as a support system for everyone that from students in colleges to call center workers to truck drivers to prostitutes. The initiative should be able to answer the basic fault with the situation that causes people to behave in a manner makes them adopt risky behavior. At a more detailed aspect, in order for these initiatives to be adopted and to bring about a life-style change in high risk groups, the ever important and menacing problems in developing countries will need to be tackled beforehand. Unemployment and the resulting poor socio-economic status, poor living conditions, population explosion, social evils (such as child marriage, dowry system, gender inequality), poor social support for single women, ineffective legal measures, illiteracy and poverty are only a few to name. It is obvious that the unfortunately mammoth proportions of the HIV pandemic are in no means independent of these problems.

Also, treatment of HIV will cost dearly to the society in the long run. This is expected to skew the ratio of health resources distribution in a developing country, already burdened by other diseases, with a greater priority for preventive health programmes, including programmes for AIDS, as well as immunization, nutrition. This should be with a specific emphasis on other primary health care programmes only with this can we expect to actually benefit the society from the HIV oriented programmes. In isolation, the HIV related programmes will only fail and that would be disastrous.

As much as the solution lies in medication and provision of facilities, the pandemic will only ever be truly defeated if we address the problems faced since time immemorial, since it is there that the true cure lies.

“What the mind does not know, the eyes won’t see,” is what the anesthetist told her son at the end. Maybe all that was on her mind when she said that was “Will the present efforts defeat HIV?” Or maybe all that she meant to say was that untill we eradicate the basic problems affecting people, we won’t be able to hinder the march of HIV for much longer.

Viren Kaul is a final year medical student at the Karnataka Institute of Medical Sciences in India.

Vishala Mishra is a second year, medical student at the Madras Medical College in India.

REFERENCES:

1. Nagda BL. Awareness about HIV/AIDS among Slums dwellers of Udaipur District. Population Research Centres, Ministry of Health and Family Welfare, India. http://72.14.235.132/search?q=cache:TDTu04htHAgJ:prcs-mohfw.nic.in/writereaddata/research/546.doc+Prasada+Rao+J.R+et+al.+(2004),+‘India’s+response+to+the+AIDS+epidemic’,+The+Lancet,+vol.+364,+no.+9442,+October

Background information from

• Woolley, P (1993) Promoting sexual health in general practice , British Journal of Sexual Medicine November/December: 4-5

• UNAIDS and WHO (1999) AIDS Epidemic Update: December 1999. Geneva: Joint United Nations Programme on AIDS and World Health Organization.

• Godley, M.J. (1993) the management of sexually transmitted diseases in pregnancy. Medicine International 21(3):74-81

• The Lancet (2003) ‘Spreading the word about HIV/AIDS in India’, Vol.361, May 3

• Panda S. (2002), ‘The HIV/AIDS epidemic in India: an overview’, in Panda S., Chatterjee A. and Abdul-Quader A.S. (Eds.), ‘The epidemic and the response in India’, p.20

• Prasada Rao J.V.R et al. (2004), ‘India’s response to the AIDS epidemic’, The Lancet, vol. 364, no. 9442, October 9-15 2004

Mr Kapil Sugand and Dr Alexander James Hills express their views about the need for altruism within students in relation to the development of a HIV vaccination.

While numerous infections have plagued mankind for millennia, the HIV outbreak emerged less than three decades ago. However in this time, HIV has evolved from a small epidemic to one of the most devastating pandemics in modern history. In doing so, it has managed to gain attention from governments, global media, and the general public on a scale that no other disease has seen before.

Over 35 million people are currently living with HIV/AIDS and approximately 7,000 additional individuals are infected each day worldwide (1).  While HIV has become a manageable condition in the developed world, it is still decimating developing countries.  In developing nations, still striving for basic access to water, equality and freedom, access to essential HIV treatment is definitely lacking.  Firstly, the high cost of HIV ‘Highly Active Anti-Retroviral Treatment’ is a key reason why less than 10% of people with HIV have access to antiretroviral therapy (2).  Secondly, even in those receiving treatment, HAART is unable to fully eradicate latent HIV-1.  Thirdly, the other issues associated with HAART treatment include the threat of drug resistance and adherence problems to name a few.

A large proportion of medical students enter medical school with a sense of a ‘greater calling’ and the intent of leaving behind a legacy.  However, such a quality tends to gradually fade away during the progression in medical school after being sidelined by responsibilities, studies and relationships.   Often the more motivated students invest their electives in basic missionary work on the African, Asian and South American continents with the hope of helping reduce the burden of HIV/AIDS.   Unfortunately, most of these students are restricted from helping effectively by their lack of experience, and leave their elective feeling that their overall impact in tackling HIV was minimal.  

So how can we as medical students combat HIV/AIDS?  If going abroad has limited value, how can we contribute to the advancement of HIV treatment in our own home countries? We have a controversial suggestion…

To circumvent the problems with drug treatment, one of the major internationally-recognised Millennium Development Goals is to find an HIV vaccine (3).  In an attempt to meet this goal over thirty HIV vaccination trials are currently in development (4).  However, many of these HIV trials have their progress slowed by the lack of control subjects. With the help of altruistic volunteers, researchers would be one step closer to developing this necessary ‘magic bullet’ in the eradication of HIV. This is where students, for instance, could make all the difference. Even if a vaccine does not turn out to be a definitive cure due to the adaptability of the virus, it could be a valuable tool in turning the tide of this pandemic.

Presently there are more opportunities to get involved in research and clinical trials than ever before. Despite a small increase in the risk of contracting HIV in control subjects, through consequential unsafe sexual practice, the side effects from these vaccination trials are few. More importantly, the HIV Vaccine Trials Network (5) informs prospective volunteers that there is no risk of contracting HIV from such vaccines. It is important to be critical of this guidance as the Washington Post (6) have reported that the clinical trial using Merck & Co. vaccines may have led to increased rate of HIV infection in vaccinated test subjects.   Especially considering the potential problems of getting a career-damaging false positive HIV test result, and the fact that medical students are especially vulnerable to coercion and manipulation into joining trials this is a commitment not to be taken lightly (7).

We feel, for once, that medical students have the power to influence history. As Nelson Mandela once said ‘We must use time wisely and forever realize that the time is always ripe to do right’. Making HIV history is certainly feasible; making it a reality is up to us. If ever in doubt about the benefits of helping out with HIV research, just ask yourself these following questions: If not here, then where? If not now, then when? If not you, then who?

Kapil Sugand is a medical student at Imperial College School of Medicine, London, UK

ks704@imperial.ac.uk   

Dr Alexander James Hills is currently working at Charing Cross Hospital, London, UK

ajh502@imperial.ac.uk  

References:

(1) Need for a Vaccine, IAVI – International AIDS Vaccine Initiative [homepage on the Internet]. Unknown. 2008 [Cited 29/08/2008] Available from: http://www.thelancetstudent.com/wp-admin/www.iavi.org/viewpage.cfm?aid=7

(2) Global Citizen Corps: HIV/AIDS, Mercy Corps, [homepage on the Internet]. New York, USA. 2008 [Cited 29/08/2008]. Available from http://www.thelancetstudent.com/wp-admin/www.globalcitizencorps.org/issues.htm?page=issues_hivaids

(3) United Nations Millennium Development Goals [homepage on the Internet]. New York, USA. 2000-2008. [Cited 29/08/2008]. Available from http://www.thelancetstudent.com/wp-admin/www.un.org/millenniumgoals/

(4) England R. The writing is on the wall for UNAIDS. BMJ 2008 May 10;336(7652):1072.

(5) HIV Vaccine Trials Network [homepage on the Internet]. Washington, USA. Unknown. [Cited 31/08/2008]. Available from: www.hvtn.org/community/hvad.html

(6) Timberg C, Warning Is Sent to AIDS Vaccine Volunteers. Washington Post, 2007 Oct 25; A20. Available from: www.washingtonpost.com/wp-dyn/content/article/2007/10/24/AR2007102402514_pf.html

(7) Christakis N. Do medical student research subjects need special protection? IRB 1985 May-Jun;7(3):1-4.

Rebecca Bartlein writes about her concerns with the reauthorization bill for PEPFAR in relation to its ability to prevent the transmission of HIV/AIDS.

Federally funded reproductive health education curriculum in the United States has changed dramatically in the past decade with the passage of Title V, Section 510 of the Personal Responsibility and Work Opportunity Reconciliation Act in 1998 (1).  Title V, Section 510 authorized $50 million annually from the federal government for abstinence-only sex education programs in public schools across the country (2).  Currently the Tom Lantos and Henry J. Hyde United States Global Leadership Against HIV/AIDS, Tuberculosis, and Malaria Reauthorization Act of 2008, commonly known as the reauthorization bill for PEPFAR (the U.S. President’s Emergency Plan for AIDS Relief (3)) is making its way through congress.  However I am personally angered to see that not only has the Bush Administration let ideological considerations supersede public health and ethical concerns in our own health education system but is continuing to export this ideology as one of the strings attached to PEPFAR aid money. Currently, PEPFAR allocates a third of its funds for abstinence-only sex education as a means to prevent HIV, and encourages youth education about condoms only when emphasizing the failure rate of these prophylaxes. Although the language in the current reauthorization act is not as specific, little change in programming will occur unless PEPFAR has specific stipulations for including comprehensive reproductive health education for young people.

The evidence that the abstinence-only educational model is not appropriate has been presented in many studies in the U.S. (4).  Studies have been done to evaluate how closely the sexuality education curriculum in Title V programs follows what parents/taxpayers want and expect in terms of sexuality education for their children. One such study by researchers at the University of North Carolina – Chapel Hill showed that 89% of parents across North Carolina supported comprehensive sexuality education and more than 90% of respondents felt that parents and public health professionals should determine sexuality education content, not politicians (5).   This study surveyed 1306 parents across the state of North Carolina, where there are mandated abstinence-only sex education programs. Additionally, multiple studies have shown that abstinence-only sexuality education is not effective at lowering rates of teenage pregnancy or STI/HIV infection (6)(7).  In fact, the official evaluation commissioned by U.S. Congress showed no difference in sexual behaviors between youth who had access to the abstinence-only program and a control group that had no access to any sexuality education program (8).  These findings do not bode well for the reputation of abstinence-only education, and yet, the administration refuses to acknowledge its failed policy and continues to push its ideological product in the face of solid facts. 

So now, countries that are faced with the HIV pandemic and who are looking to the international community for support and funding are forced to accept the strict ABC (A – Abstinence, B – Be Faithful, C – Correct and Consistent use of Condoms where appropriate) approach to HIV prevention in order to receive PEPFAR aid. Unfortunately, twice the amount of emphasis is put on the A and B of the program, which reach over 41 million, than on the C goal, which is only directed to reach 16 million (9).  In PEPFAR programs, condoms are only promoted to those considered “high risk” such as sex workers, truck drivers, discordant couples, etc. despite the fact that in most PEPFAR countries the epidemic is generalized throughout the population (10).  PEPFAR funds may not be used to promote or distribute condoms to youth or in school settings, and abstinence and faithfulness are the only methods discussed with youth in order to prevent disease and unwanted pregnancies. In fact, PEPFAR implementing agencies are discouraged to educate youth about condoms at all unless it is to emphasize their failure rates and often this manifests in messages that condoms are not reliable enough to make them worth using or that they often have holes in them (10).  The result is that people have less accurate information about condoms, which would lead them to use them less, but results in no change in sexual behaviors.

Despite strong scientific evidence that an abstinence-only approach to sexuality education does not lead to the desired results of lower STI/HIV infection rates and fewer early unplanned pregnancies, the U.S. continues to export this intervention through its PEPFAR requirements. While programs should be tailored to fit the cultural and epidemiological specificities of the populations that they aim to reach, in no situation should ideology supersede scientific findings. If the United States wants to protect its reputation as a leader in the fight against the HIV epidemic, it needs to start basing policy decisions on clear and rigorous bodies of medical and scientific evidence. All young people, no matter where they are, “need accurate, positive and comprehensive information about safer sex and condoms because they are already sexually active or will be in the future.”(10).  With its dissemination of billions of dollars, the federal government must begin to support comprehensive programs and education that will actively lower the risk of youth developing STIs, HIV and unwanted pregnancies – by taking into account the realities of youth’s behaviors and culture both at home and abroad.

Rebecca Bartlein is a MPH Candidate studying within the Department of Global Health at the University of Washington

bartlein@u.washington.edu

(1) “Title V, Section 510 Abstinence Education Program has allocated $50 million annually for programs that teach abstinence from sexual activity outside of marriage as the expected standard for school-age children.” C. Trenholm, B. Devaney, K. Fortson, L. Quay, J. Wheeler, M. Clark. Impacts of Four Title V, Section 510 Abstinence Education Programs Final Report April 2007. Mathematica Policy Research, Inc.

(2) Abstinence-only education for youth is defined as a program that: 1) Has as its exclusive purpose teaching the social, psychological, and health gains to be realized by abstaining from sexual activity; 2) Teaches abstinence from sexual activity outside marriage as the expected standard for all school-age children; 3) Teaches that abstinence from sexual activity is the only certain way to avoid out-of-wedlock pregnancy, sexually transmitted diseases, and other associated health problems; 4) Teaches that a mutually faithful monogamous relationship in the context of marriage is the expected standard of sexual activity; 5) Teaches that sexual activity outside of the context of marriage is likely to have harmful psychological and physical effects; 6) Teaches that bearing children out of wedlock is likely to have harmful consequences for the child, the child’s parents, and society; 7) Teaches young people how to reject sexual advances and how alcohol and drug use increase vulnerability to sexual advances, and 8 ) Teaches the importance of attaining self-sufficiency before engaging in sexual activity. C. Trenholm et al.

(3) Tom Lantos and Henry J. Hyde United States Global Leadership Against HIV/AIDS, Tuberculosis, and Malaria Reauthorization Act of 2008.

(4) Ethics, Ideology, and Reproductive Health Policy in the United States. Andrzej Kulczycki. Studies in Family Planning Vol. 38 Number 4 p. 333-351. December 2007.

(5) “We defined comprehensive sexuality education as education that includes a discussion of how to use and talk about contraception with partners.” K. Ito, Z. Gizlice, J. Owen-O’Dowd, E. Foust, P. Leone, W. Miller. Parent Opinion of Sexuality Education in a State with Mandated Abstinence Education: Does Policy Match Parental Preference? Journal of Adolescent Health. 2006 Apr 28; 39(5): 634-641

(6) The Content of Federally Funded Abstinence-Only Education Programs. Prepared for Rep. Henry A. Waxman. United States Committee on Government Reform – Minority Staff Special Investigation Unit, December 2004. Permanent URL:  http://oversight.house.gov/documents/20041201102153-50247.pdf

(7) Pamela K. Kohler, R.N., M.P.H., Lisa E. Manhart, Ph.D., and William E. Lafferty, M.D. Abstinence-Only and Comprehensive Sex Education and the Initiation of Sexual Activity and Teen Pregnancy. Journal of Adolescent Health. 2008 Aug; 42: 344-351.

(8) C. Trenholm et al.

(9) Accountability: Report on PEPFAR Partnerships for Prevention, Treatment and Care. Permanent URL: http://www.pepfar.gov/press/fourth_annual_report/99832.htm.

(10) G. Gordon, V. Mwale. Preventing HIV with Young People: A Case Study from Zambia. Reproductive Health Matters. 2006; 14 (28): 68-79.

Lisa Patel writes about the DDT eradication programme and reflects on the impact of its failure on future plans to eradicate malaria.  

In 1955, Fred Sopor, the head of the Pan American Sanitary Bureau and a former Rockefeller Foundation official, launched a global program to eradicate malaria.  Backed by the WHO and the United States, the modern equivalent of billions of dollars was spent in the name of eradication.  It was an ambitious goal but eradication using the potent insecticide Dichloro-Diphenyl-Trichloroethane (DDT) seemed possible.  Evidence had shown that the effects of spraying lasted up to one year and the insecticide always killed. 

Always, that is, until the mosquito population started to evolve.  Whether it was a change in the mosquito’s behavior to avoid DDT-sprayed walls, or evolutionary selection of mosquitoes that were resistant to DDT, DDT-resistant mosquitoes began to appear in the early 1960s.   Unfortunately, resistance to chloroquine (a cheap and easily manufactured medicine against malaria) also started to appear in the 1960s, rendering this potent treatment completely ineffective.  Not only was DDT not killing infected mosquitos, individuals could no longer be treated for the disease and continued to transmit the malaria parasite.  As a result, hundreds of millions of people in African countries continued to be infected every year. The eradication plans were also harmed by the realization that DDT was accumulating in ecosystems and causing harm in wildlife, resulting in the decision to ban DDT.(2)

As a result of these problems, the promising eradication was a failure.  In countries such as Sri Lanka, where the rates of malaria had been brought down from the thousands to only 10 per year, malaria came roaring back with a vengeance.  The WHO and the United States were forced to abandon the goal of eradication after sinking billions of dollars in the campaign.  They also abandoned plans for a cohesive, well-funded program to fight malaria for decades to come.(1)  The current worldwide situation is shocking, 1 million people die from malaria each year with the majority being children under the age of 5.(3)

Unfortunately in trying to make sense of the failure of the malaria eradication campaign, many years have been spent finger-pointing about the decision to ban DDT.  Critics argue that had DDT not been banned in the 1970s, millions of lives could have been saved.  Some even think that the banning of DDT represented the elitist hand of Western governments denying poorer countries a valuable tool to help eradicate malaria from their own populations.(4)

Given the complexity of malaria as a disease, any argument that points to a single cause as the reason for the failure of the eradication campaign misunderstands the fight against malaria altogether.  The first problem with the eradication plans was that DDT failed to eradicate malaria and instead created a false hope that led to the ultimate resurgence of the disease.  It must be realized that DDT is at best one of the tools available in the fight against malaria, but history has taught us that we cannot rely on DDT alone.(5)  Mosquitoes develop resistance, and the level of spraying required to eradicate all the infected mosquitoes is impossibly high in remote areas with populations live hundreds of kilometers from each other.(6)  The second problem was the fallacy of eradication as a goal.  Eradication can work for certain diseases, such as smallpox, which have simple life cycles and no animal reservoirs.  But in the case of malaria, which operates through a complex interaction between vectors, climate, human population, and microhabitat, multi-pronged approaches are essential to success.  Fortunately, today we understand that DDT is but one element in the fight, and that malaria will likely never be eradicated until universal diagnosis and treatment are possible.  Our goal should instead be implementing the best controls so that malaria can be beaten back to levels that do not continue to devastate the lives and economies of some of poorest countries in the world.

DDT is not a catch-all solution nor is it sustainable.  History has shown us that at best, it can relieve the rates of malaria for tropical countries for a few years before resistance develops.  As an example, the overuse of DDT in Sri Lanka created a newly resistant DDT-mosquito population.  In the meanwhile, no significant changes were made to health care access or to eliminate mosquito breeding grounds.  Therefore malaria in Sri Lanka was allowed to resurge without much resistance, subsequently infecting communities with reduced immunity to malaria due to a lack of exposure.  

Malaria is rooted in something far deeper and harder to tackle than merely spraying insects into oblivion.  It is the result of a complicated interplay between poverty, climate, access to health care, and changing landscapes that become prime mosquito habitats.  Here in Iquitos, Peru where I sit as I write this article, malaria has reached epidemic levels, and is being worsened by human development.  New roads are being built throughout the Amazon rainforest, which provides greater accessibility for migrant farmers.  As a result farmers move into new regions of the Amazon and clear land for agriculture, artificially creating water holes and living close to shaded marshes for easy access to water.  This is leading to the development of new prime areas for mosquito breeding.  The farmers are also far removed from any health infrastructure providing information, diagnosis or treatment.  In consequence, even though malaria is a treatable disease, malaria continues to increase with or without DDT.

No donor wants to hear that you must ¨solve¨ poverty itself before you can make any significant headway in a particular problem but this is the only sustainable way to remove malaria.  Populations need improved infrastructure, cheaper and more available medication, increased access to health care, more information on preventative measures such as bednets, and the ability to eradicate vector habitats from their surroundings.  These changes will not come easily nor quickly, and require a sustained effort on the part of governments, donors, and communities to make a lasting change.  And in the meanwhile, we should not fall for the trap of eradication as a goal, or a single-bullet solution in the form of DDT.  It has failed us before and we should learn from our mistakes.

Lisa Patel is a 2nd year medical student at Johns Hopkins School of Medicine, Baltimore, USA.

lpatel4@jhmi.edu

(1) Malaria and the politics of disease.  The Economist.  April 8, 2008.  http://www.economist.com/world/international/displaystory.cfm?story_id=11019802

(2) Don’t blame environmentalists for malaria.  Sonia Shah.  The Nation.  2006.  http://www.thenation.com/doc/20060417/shah

(3) A new global effort to control malaria. Jeffrey Sachs.  Science.  298:122 (2002). Pp.122-124.

(4) What the world needs now is DDT.  Tina Rosenberg.  New York Times.  April 11, 2004. http://www.nytimes.com/2004/04/11/magazine/11DDT.html?ex=1397016000&en=4ebf5b1fab869680&ei=5007&partner=X

(5) If malaria’s the problem, DDT is not the only answer.  May Berenbaum.  Washington Post.  June 5, 2005.  p. B03

(6) The mosquito killer.  Malcolm Gladwell.  The New Yorker.  July 2, 2001.  P.42