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Neglected Tropical Diseases and International Cooperation:
What Can a Small NGO Do to Help Buruli Ulcer Patients?

NIIYAMA Tomoki September 10, 2014 Gakubunsha, 178p.
[Japanese]

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Neglected Tropical Diseases and International Cooperation: What can a Small NGO do to help Buruli Ulcer Patients?


NIIYAMA Tomoki September 10, 2014 Neglected Tropical Diseases and International Cooperation: What Can a Small NGO Do to Help Buruli Ulcer Patients?,Gakubunsha, 178p. ISBN-10:4762024732 ISBN-13:978-4762024733 3800 yen+tax [amazon][kinokuniya]

■Contents

(From the Website of Gakubunsha)
In this book the author clarifies both the current condition of international cooperation on a global basis toward infectious diseases and the possibility of establishing a network against global infectious diseases by focusing on Buruli Ulcer, one of neglected diseases.

Accelerating globalization of human transfer and increase of tropical areas as a result of the issue of warm temperature trend can lead to epidemic spread of tropical diseases.

By focusing on Buruli Ulcer, the author considers what countermeasures are necessary to this issue for all human beings from a local level to the world level-- clues not only for establishing the network but for the way of general (comprehensive) supports, covering medical care, education, and life.

The author clarifies, theoretically and practically, possibilities of small-size NGOs and conditions of its feasibility from the viewpoint of the establishment of multitier international support networks.

■Table of Contents

Introductory Chapter
Chapter 1 Dicussions Surrounding Infectious Diseases (Tropical Diseases) and International Countermeasures
 1 Globalization of Tropical Diseases
   (1) Globalization and Infectious Diseases
   (2) Environmental Issues and Infectious Diseases
 2 Raising the Concept of "Neglected Tropical Diseases" by WHO
   (1) What Are Neglected Tropical Diseases?
   (2) Common Characteristics
   (3) Relation with Millennium Development Goals
 3 International Cooperation and NGOs concerning Infectious Diseases
   (1) International Cooperation concerning Infectious Diseases
   (2) Involvement of NGOs
   (3) Significance of Establishing a Network
Chapter 2 Current Condition of Buruli Ulcer and the Countermeasures against It
 1 History of Buruli Ulcer and Its Current Medical Condition
 2 WHO and Buruli Ulcer Initiative Meeting
 3 Social Condition in Susceptible Areas and Current Condition of Buruli Ulcer
   (1) Outline of the West Africa
   (2) Republic of Ghana
   (3) Republic of Benin
   (4) The Togolese Republic
 4 Position and Role of NGOs under the Issue of Buruli Ulcer
Chapter 3 Socioeconomic Issues in Infectious Areas and limitation of Medical-centered Support by WHO
 1 WHO as International Medical Organization
 2 Trend of WHO cocnerning Buruli Ulcer
 3 Limitation of Support by WHO
 4 Socioeconomic Issues
 5 Medical Staff's Concentration in the Urban Area and Brain Drain
Chapter 4 The Role of Project SCOBU
 1 Process to Support
 2 Concrete Examples of Support Activities
   (1) Support above Medical Area
   (2) Support from the Viewepoint of Education
 3 Analysis of Activities of Project SCOBU
 4 Possibility of Support of Small-size NGOs
   (1) Characteristics of Small-size NGOs
   (2) Effective Use of Resources
Chapter 5 Possibility of Establishing a Network against Infectious Diseases: Seeking from the Issue of Buruli Ulcer
 1 Cooperation Model of Buruli Ulcer
   (1) WHO, Government, and the Role of WHO
   (2) Cooperation Model:Ghana/Benin Type and Togolese Type
 2 Establishment of a Network against Infectious Diseases and Role of Small-size NGOs
Final Chapter
Reference Literature
Reference Material
Africa in Pictures
List of First Appearance
Afterwords

■Excerpt

■Introductory Chapter

The purpose of this book is to examine “Buruli ulcer," one of the “Neglected Tropical Diseases”, and in doing so elucidate the current state of initiatives being undertaken on a global scale to address infectious diseases and the potential for the construction of a global infectious disease policy network.

The history of humanity has been described as the history of the fight against infectious diseases. In the past the areas affected by diseases like leprosy, cholera, and syphilis expanded along with the movements of people caused by war and commerce. Particularly since the latter half of the 20th century, a period of vigorous global industrial development, diseases that had been confined to a particular region (endemic diseases), such as AIDS and SARS, have come to threaten other regions as infectious diseases. As has been pointed out in "Strategic and technical meeting on intensified control of neglected tropical diseases: A renewed effort to combat entrenched communicable diseases of the poor", a report of an international workshop 2006 issued by the World Health Organization (WHO), it is clear that today infectious diseases are still shockingly rampant, particularly in tropical regions (what we call tropical diseases). In recent years the threat they pose has received a lot of media attention, and the importance of international policies to address it has begun to be recognized. For example, in 2007 the Bush administration called on the United States Congress to increase funding for measures to deal with HIV/AIDS. Yet international measures are only being taken in regard to a small portion of the infectious diseases currently spreading throughout the world, and the majority of them are being left unattended. Buruli ulcer, the infectious tropical disease examined in this research, has for decades been identified by experts as one of these diseases that have not been addressed, or “neglected tropical diseases.”

The chief characteristic of policies addressing neglected tropical diseases is that they do not stop at medical issues as it is shown in Neglected Tropical Diseases, Hidden successes, Emerging opportunities (World Health Organization, 2006). Areas requiring an urgent response are mostly in tropical, impoverished regions such as Sub-Saharan Africa, and the lack of adequate infrastructure complicates the problem. Even infectious diseases that can to some extent be handled in major cities cannot be adequately dealt with by the establishment of health centers, the key element of the public health network in rural areas, and as transportation infrastructure is also inadequate providing health and nutrition guidance becomes very difficult. In other words, the socio-economic problems particular to developing countries are important factors in delaying effective treatment of infectious diseases. Since various problems, including not only socio-economic but also historical, research and development, cultural, political, and natural environment/living environment factors, are connected to this issue in complex ways, policies that take these factors into consideration are required.

The United Nations adopted “Millennium Development Goals” of achieving specific numerical targets by 2015 as an effort toward solving these various global problems. Various issues such as poverty, education, and infectious diseases were put forward as targets of these initiatives, including “neglected tropical diseases”. Achieving the Millennium Development Goals requires the collaboration of not only governments and international bodies but also aid groups such as international NGOs. The importance of international NGOs is particularly evident in fields in which political/policy intervention is difficult and responses tend to be slow, and without NGOs the realization of the comprehensive support demanded by the international community would be impossible.

Still, it is also a fact that the support NGOs are able to provide is limited in both its targets and its scope. It is difficult for individual aid groups to respond to the diverse needs required to fight against tropical diseases. What we should expect from NGOs is that aid groups with many different characteristics realize the most effective support possible while cooperating with international bodies and the governments of the countries receiving aid.

This book is composed of the following five sections based on this understanding of the issues. Chapter One addresses the potential for the construction of a global infection policy network, and, in addition to the trends concerning things like the circumstances surrounding infectious diseases and Millennium Development Goals mentioned above, examines literature on network construction in regard to NGOs. For example, the international aid for developing countries that has been put in place since the 1960s has led to the construction of NGOs' activites, development stage theory or strategic theory based on factors such as the problem awareness, provider, target, and duration of aid found in the works of David Korten.

The trend toward democratization in Africa in the 1980s and 1990s has been proposed as one reason that neglected tropical diseases have come to receive more attention. This period was one in which the trend toward supporting developing countries through development aid, international NGOs and other approaches strengthened, the socio-economic influence of aid providing countries’ NGOs on countries and regions was large (for example, the expansion of distribution networks through road maintenance and the improvement of public hygiene through improving infrastructure such as water, sewage and drainage systems), and the aid providing countries’ NGOs began to take on more social responsibility in impoverished regions. The development of transportation and communication networks through the acceleration of globalization has also transmitted information about states of affairs that had previously been confined to local areas throughout the entire world. Problems that had been seen as local issues and received little attention were thus suddenly expanded/transmitted to the world and brought to the fore as problems on a global scale.

In order to focus on the problems of neglected tropical diseases/Buruli ulcer among global infectious diseases, develop the discourse, and clarify the roles of network construction and small-scale NGOs, it is essential to engage in literature review discussed above.

Chapter Two clarifies issues related to the problems of neglected tropical diseases/Buruli ulcer. At present Buruli ulcer is found in at least thirty-two countries or regions in West Africa, Central Africa, and Southeast Asia, with its presence having been confirmed in mainly tropical and subtropical areas. The first symptom to appear when the disease is contracted is a painless ulcer called a “papule” that resembles an insect bite, and when this expands the amputation or surgical removal of the affected area becomes necessary. Although it has been determined that the cause of the disease is Mycobacterium ulcerans, the sources and route of infection are still being studied and have not yet been made completely clear.

In addition to this lack of understanding of the disease itself, there are also the following problems related to the construction of support networks. In developed nations including Japan, distribution networks as well as communication networks have been set up throughout the entire country, and you can receive the same information and medical services wherever you go. In developing nations such as many of the countries in Africa, however, there are many cases in which distinct, isolated societies are formed at the unit of the village or hamlet, and this ends up impeding the penetration of information and medical services. Dr. Wayne M. Meyers, one of the pioneers of Buruli ulcer pathology, has indicated that the key to solving this problem lies more in the resolution of the socio-economic issues that exist in these regions than in providing medical treatment. Dr. Francoise Portaels has also expressed the same opinion concerning this disease.

As for research on its medical treatment, at present studies are being conducted on the use of antibiotics, and it has become clear at the research stage that they can shrink ulcers that have been discovered early. While the lethality of infection is low, in most cases the situation ultimately reaches a point where the amputation or removal of the affected area using surgical techniques cannot be avoided even if antibiotics are used because the rate of natural healing once symptoms have emerged is also low.

There are many factors that make diagnosing the disease difficult, including people not obtaining medical care for economic or religious reasons, doctors lacking the expertise to identify Buruli ulcer, and lack of access to medical facilities caused by inadequately maintained infrastructure. Even when patients are able to receive medical care, there are many problems they may face in returning to society after their treatment has been completed, including physical disability, mental anguish caused by discrimination and prejudice, and inability to pay their medical bills.

In Chapter Three, the question of what sort of policies/aid programs have been implemented in response to the problems presented in Chapter Two is examined on the basis of surveys. In particular, the WHO, governments, and NGOs that have dealt with the issue of Buruli ulcer in the past are addressed and examined. Initiatives addressing Buruli ulcer, which has been positioned as a neglected tropical disease, involve policies and research conducted by the WHO in cooperation with governments and NGOs. The carrying out of a series of activities in earnest was sparked by the establishment of the Global Buruli Ulcer Initiative (GBUI), a program composed of medical professionals, in 1998. These activities produced many results over the next ten years, such as the adoption of the Yamoussoukro Declaration in 1998, the adoption of a resolution to accelerate the establishment of research and treatment adopted at the World Health Assembly in 2004 (WHA57.1)*1, and the adoption of the Cotonou Declaration at the international meeting held in the Republic of Benin in March 2009.

Recently, the support activities conducted in each affected country by aid groups such as NGOs under the leadership of the WHO have come to play an important role. These include groups such as the ANESVAD Foundation and the Nippon Foundation that have been involved in aid on a macro scale since the establishment of the Global Buruli Ulcer Initiative (GBUI) through activities such as organizing international conferences and contributing to the anti-Buruli ulcer programs of governments of affected countries (National Buruli Ulcer Control Programme:NBUCP), and groups engaging in aid on a micro scale by treating people who have the disease and providing support to individuals after they have been treated.

With the cooperation of NGOs, over the past fifteen years the existence of the Buruli ulcer problem has gradually come to be recognized along with the threat it poses. The Republic of Ghana, for example, by accepting active advice from the inauguration of the Global Buruli Ulcer Initiative (GBUI) onward, has begun to establish the National Buruli Ulcer Control Programme (NBUCP) as one of its state healthcare systems with NGO funding. While addressing the Buruli ulcer problem in places such as Ghana as an example of medical NGO aid, the book clarifies the current state of aid and the role of NGOs by examining such cases.

Chapter Four looks at Project SCOBU: Save the Childen from Buruli ulcer (hereafter Project SCOBU)*2, one of the few Buruli ulcer aid groups in Japan. Although Project SCOBU is a small-scale NGO, it has provided comprehensive support from various perspectives from assisting in the construction of facilities to educating children with the disease, mainly in West African countries such as Ghana, Benin, the Togolese Republic, Republic of Cote d'Ivoire, and the Republic of Cameroon.

The aid projects for Ghana, Togo, and Benin are emblematic of Project SCOBU’s activities. In Ghana, Project SCOBU provides aid by donating washing machines. As treatment is mainly provided by traveling clinics there, portable equipment is required. At the hospitals in Ghana (actually many hospitals in Africa) since there are shortages of things such as bandages, they are often washed by hand and reused. From the perspective of cleanliness and efficiency there is thus a need for special washing machines that can facilitate the reuse of bandages. However, since official support from the government is limited to direct aid such as medical equipment, this support does not extend to broader aspects of aid closely related to medical treatment. Taking this into consideration, Project SCOBU is involved in indirect medical aid such as the donation of washing machines and the portable basic surgery sets needed by traveling clinics as a form of support that performs what is essentially the function of hospitals. This is a case that highlights the necessity and effectiveness of broader aid programs conducted on a trial basis by international aid organizations whose targets of support are not fixed. It was presented to the WHO Annual Meeting on Buruli Ulcer, and has had a large influence on the WHO and other NGOs.

The “Education fund for children with Buruli ulcer” for Benin has also provided funding for the “Programme National de Lutte Contre l'Ulcere de Buruli” that has been used for in-hospital education of children who have required hospitalized after contracting an infectious disease (including Buruli ulcer) and to support these children’s returning to school after they have been treated. Since the cost of treatment of Buruli ulcer is high in comparison to other diseases, and on top of this cost the families of patients must also take responsibility for their upkeep (including providing them with food) during their treatment/hospitalization, these families must bear a large economic burden. This becomes a significant impediment to children returning to school, and since most children with Buruli ulcer suffer from lasting effects on the functioning of their legs and arms, it is necessary to plan for their future economic independence by giving them functional training alongside their regular school education. Focusing on these issues, support is provided for in-hospital education and by extension support for a return to schooling that can become impeded.

Moreover, in Togo the organization is implementing an education fund for children with Buruli ulcer which is similar to the one in Benin, and in addition has also developed aid initiatives to facilitate early detection and treatment through supports such as support for mobile medical supervisors called “field operators”*3, physiotherapy support programs, and the donation of technical books.

These sorts of initiatives offer proof that even small, non-medical organizations can conduct needed and effective international aid activities in response to various problems including Buruli ulcer, neglected tropical diseases, and other infections diseases that may emerge in the future. A major difference between this organization and other groups addressing the problem of Buruli ulcer is that it conducts aid activities not only in the field of medicine but also in the fields of education and economics while remaining a small-scale NGO. Because the symptoms and physical changes caused by Buruli ulcer are similar to those caused by Hansen’s disease (leprosy), many of the people involved in studying and treating Buruli ulcer have a background in the treatment of Hansen’s disease. As a result, almost all of the aid devoted is concentrated in the field of medicine.

Because the WHO is an institution focused on healthcare/medical treatment, by nature it is presumably quite difficult for it to provide aid in other fields. In reports and international conferences initiated by the WHO policies specializing in medicine/healthcare predominate as a result of the nature of this organization, and it is difficult to create policies involving other fields or implement a comprehensive approach. The WHO’s international initiatives regarding Buruli ulcer, looked at from 1998 to the present, still have a tendency to focus on medical treatment. The WHO itself must presumably have a fundamental understanding of the fact that a comprehensive approach addressing not only medical treatment but also poverty and education is needed. In places where the disease is spreading, however, many issues concerning not only the field of medicine but also problems involving things including the money needed to receive medical treatment and training/education after treatment has been received remain, and the role being played by this NGO is therefore quite large.

This chapter clarifies the advantages and roles played by small-scale NGOs while focusing in particular on information collection and methods of analysis concerning the needs and aid techniques and the methods of forming a partnership with the people involved and other institutions which are addressed by Project SCOBU in practice. I intend to continue to examine this organization and its activities and investigate how small-scale NGOs such as Project SCOBU can be further developed to address the ever-growing threat of neglected tropical diseases and Buruli ulcer in particular.

In Chapter Five I examine the question of what forms of aid need to be developed to address the problem of Buruli ulcer going forward. By pursing the potential for the construction of a multilayered international aid network (connecting the government, international bodies and (small-scale) NGOs) that takes into consideration the individuality of developing nations and regions (Africa), my aim is to conceive and construct a universal network model addressing not only Buruli ulcer but also other neglected tropical diseases and infectious diseases that pose a risk of spreading (endemic/tropical diseases). In order to take effective measures against infectious diseases such as Buruli ulcer, there is an urgent need for research that sufficiently takes into account historical and cultural particularities of the regions in question, such as the lingering effects of the colonial period and ethnic/multicultural coexistence, in addition to the severe political, economic and social situations in specific African nations. I positively examine the potential for the construction of networks while clarifying the individual circumstances of each region by actually conducting aid activities in these areas and identifying the qualities/characteristics, roles, and problems of international institutions, governments, and NGOs.

This is the overall structure of this book. To write it, in addition to reviewing the existing literature on Buruli ulcer and neglected tropical diseases, I also sought to ascertain the state of affairs on the ground concerning Buruli ulcer and NGO activities by conducting seven studies in Africa (Ghana in March 2006, Benin in March 2007, Ghana/Togo in March 2009, Togo/Benin in March 2010, Ghana in August 2011, Togo in August 2012 and Togo in August 2013). This research included analyzing the WHO’s medical treatment guidelines, interviewing people working on these issues in the WHO and the national and local governments of the countries in which the disease is spreading, visiting hospitals in the affected areas, and conducting surveys in small villages.

Through participation/presentation at the WHO Annual Meeting on Buruli Ulcer seven times, I had opportunities to contact with Dr. Kingsley Asiedu who is the coordinator of the Global Buruli Ulcer Initiative of the Communicable Diseases Division of the WHO and Dr. Christian Johnson, who was the official of the Ministry of Health and Welfare in Benin at that time and was thus able to obtain hints which became the foundation of this book. This also became a clue that an aid group with diffrent characteristics looks to an effective aid network while obtaining cooperation from international bodies and the governments of recipient countries. Also I have developed my research, while clinging to activies of Project SCOBU, which implements aid activites for the problems of Buruli ulcer.

The problem of “neglected tropical diseases” has a high probability of becoming a latent threat to humanity as a whole. The expansion of the tropical regions by accelerating human-driven globalization and global warming that is occurring right now risks inviting the spread of tropical diseases. This book examines network creation and comprehensive aid activities spanning medicine, education, and all aspects of daily life by looking at the case of “Buruli ulcer”, one of the “neglected tropical diseases”, and takes this as a key to addressing the question of what kinds of initiatives are needed from the regional to the global level in response to this sort of problem that affects humanity as a whole. This research clarifies the roles of international bodies, governments, and NGOs, and, by conducting a careful evaluation/analysis of the issues, presents a model for aid to Africa addressing the various problems it faces. The small-scale NGO in whose activities the author himself actively participated forms the core of this model. The significance of this book lies in its logical/practical elucidation of the potential of small-scale NGOs and the conditions needed to realize this potential from the perspective of the construction of multilayered international aid networks. Buruli ulcer is not a disease unique to developing nations and tropical regions, and cases of it have been confirmed in Japan. Until the end of 2013, 47 cases of Buruli ulcer*4 were found in this country, and in the last few years the number of cases has been increasing. It is therefore very important that we continue studying this disease that has a high probability of expanding throughout the world and becoming a latent threat to humanity as a whole.

Notes:
*1 Resolution WHA57.1. Surveillance and control of Mycobacterium ulcerans disease (Buruli ulcer). In: Fifty-seventh World Health Assembly, Geneva, 17-22 May 2004. Resolutions and decisions, Annexes. Geneva, World Health Organization, 2004 (WHA57/2004/REC/1).

*2 Project SCOBU was established as a campus NGO in 1999 in order to support children with intractable diseases in Africa and has kept its activities lively since then although it is a small-scale. Please refer to <http://www.kobe-kiu.ac.jp/~buruli/index.html> (in Japanese) concerning this project.

*3 They are in charge of making rounds of each region/hamlet, finding a disease and encourage a person with the disease to see a doctor, and providing the reight knowledge/information through educational campaigns.

*4 "National Institute of Infectious Diseases, Japan" Retrieved from http://www.nih.go.jp/niid/ja/bu-m/1842-lrc/1692-buruli.html (in Japanese) (on May 1, 2014)
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