Neglected Patients with a Neglected Disease? A Qualitative Study of Lymphatic Filariasis

Background

Lymphatic filariasis (LF) is a so-called neglected tropical disease, currently overshadowed by higher-profile efforts to address malaria, tuberculosis, and HIV/AIDS. Despite recent successes in arresting transmission, some 40 million people who already have the disease have been largely neglected. This study aims to increase understanding of how this vulnerable, neglected group can be helped.

Methods

We used purposive sampling to select 60 men and women with filarial lymphoedema (45 with filarial elephantiasis and 15 men with filarial hydrocoele) from the south of Sri Lanka in 2004–2005. Participants were selected to give a balance of men and women and poor and nonpoor, and a range of stages of the disease. Participants'' experiences and the consequences of their disease for the household were explored with in-depth qualitative, semistructured interviews.

Findings

LF was extremely debilitating to participants over long periods of time. The stigma attached to the condition caused social isolation and emotional distress, and delayed diagnosis and treatment, resulting in undue advancement of the disease. Free treatment services at government clinics were avoided because the participants'' condition would be identifiable in public. Loss of income due to the condition was reported by all households in the sample, not just the poorest. Households that were already on low incomes were pushed into near destitution, from which it was almost impossible to escape. Affected members of low-income households also had less opportunity to obtain appropriate treatment from distant clinics, and had living and working conditions that made hygiene and compliance difficult.

Significance

This highly vulnerable category of patients has low visibility, thus becoming marginalized and forgotten. With an estimated 300,000 total cases of elephantiasis and/or oedema in Sri Lanka, and around 300,000 men with filarial hydrocoele, the affected households will need help and support for many years to come. These individuals should be specially targeted for identification, outreach, and care. The global strategy for elimination is aimed at the cessation of transmission, but there will remain some 40 million individuals with clinical manifestations whose needs and problems are illustrated in this study.     

The Global Burden of Childhood Coeliac Disease: A Neglected Component of Diarrhoeal Mortality?

Objectives

Coeliac disease has emerged as an increasingly recognised public health problem over the last half-century, and is now coming to be seen as a global phenomenon, despite a profound lack of globally representative epidemiological data. Since children with coeliac disease commonly present with chronic diarrhoea and malnutrition, diagnosis is often overlooked, particularly in poorer settings where children often fail to thrive and water-borne infectious diarrhoeas are common. This is the first attempt to make global estimates of the burden of coeliac disease in childhood.

Methods

We built a relatively crude model of childhood coeliac disease, incorporating estimates of population prevalence, probability of non-diagnosis, and likelihood of mortality among the undiagnosed across all countries from 1970 to 2010, based around the few available data. All our assumptions are stated in the paper and the model is available as a supplementary file.

Findings

Our model suggests that in 2010 there were around 2.2 million children under 5 years of age living with coeliac disease. Among these children there could be 42,000 deaths related to coeliac disease annually. In 2008, deaths related to coeliac disease probably accounted for approximately 4% of all childhood diarrhoeal mortality.

Conclusions

Although coeliac disease may only account for a small proportion of diarrhoeal mortality, these deaths are not preventable by applying normal diarrhoea treatment guidelines, which may even involve gluten-based food supplements. As other causes of diarrhoeal mortality decline, coeliac disease will become a proportionately increasing problem unless consideration is given to trying gluten-free diets for children with chronic diarrhoea and malnutrition.     

NTDs V.2.0: “Blue Marble Health”—Neglected Tropical Disease Control and Elimination in a Shifting Health Policy Landscape

The concept of the neglected tropical diseases (NTDs) was established in the aftermath of the Millennium Development Goals. Here, we summarize the emergence of several new post-2010 global health documents and policies, and how they may alter the way we frame the world''s major NTDs since they were first highlighted. These documents include a new Global Burden of Disease 2010 Study that identifies visceral leishmaniasis and food-borne trematode infections as priority diseases beyond the seven NTDs originally targeted by preventive chemotherapy, a London Declaration for access to essential medicines, and a 2013 World Health Assembly resolution on NTDs. Additional information highlights an emerging dengue fever pandemic. New United Nations resolutions on women and the non-communicable diseases (NCDs) have not yet embraced NTDs, which may actually be the most common afflictions of girls and women and represent a stealth cause of NCDs. NTDs also have important direct and collateral effects on HIV/AIDS and malaria, and there is now a robust evidence base and rationale for incorporating NTDs into the Global Fund to Fight AIDS, Tuberculosis, and Malaria. “Blue marble health” is an added concept that recognizes a paradoxical NTD disease burden among the poor living in G20 (Group of Twenty) and other wealthy countries, requiring these nations to take greater ownership for both disease control and research and development. As we advance past the year 2015, it will be essential to incorporate global NTD elimination into newly proposed Sustainable Development Goals.     

Advancing Drug Innovation for Neglected Diseases—Criteria for Lead Progression

The current drug R&D pipeline for most neglected diseases remains weak, and unlikely to support registration of novel drug classes that meet desired target product profiles in the short term. This calls for sustained investment as well as greater emphasis in the risky upstream drug discovery. Access to technologies, resources, and strong management as well as clear compound progression criteria are factors in the successful implementation of any collaborative drug discovery effort. We discuss how some of these factors have impacted drug discovery for tropical diseases within the past four decades, and highlight new opportunities and challenges through the virtual North–South drug discovery network as well as the rationale for greater participation of institutions in developing countries in product innovation. A set of criteria designed to facilitate compound progression from screening hits to drug candidate selection is presented to guide ongoing efforts.     

Botulism—Diagnosis,Management and Public Health Considerations

Botulism is an uncommon but often fatal disease associated with ingestion of a potent neurotoxin present in improperly preserved foods. Exposures to commercially preserved foods with an odd or peculiar taste almost never represent exposure to botulism toxin. Improperly prepared home-canned products which are tasted or consumed without heating are more likely to be associated with botulism.The management of suspect and confirmed cases of botulism is presented by medical epidemiologists in the State Department of Public Health, Bureau of Communicable Disease Control, to provide physicians in California with a practical approach to this problem.     

PERIODIC MEDICAL EXAMINATIONS—Disease Detection and Health Promotion

The medical examination of persons who have no medical complaints is a procedure that has different purposes than the traditional diagnostic examination. These include not only the detection of incipient disease but the evaluation of the adjustment of the individual to his environment and an assessment of his personal hygiene. It should be concluded by a discussion of what has been found, and by positive, persuasive advice and education which will lead to better health.Interest in such work and competence for it are not found in every physician. Physicians who do not want to acquire such competences should recognize the fact and refer such work to others who are prepared to cope with it. Inept, incomplete health examinations disappoint the patient and make the physician uncomfortable; thorough, constructive examination and counseling is satisfying and profitable to both.     

THE NUTRITIONAL STATUS OF THE AGING — Public Health Aspects

In preliminary analysis of nutritional, physical and laboratory data obtained in a study of 577 persons 50 years of age and over in San Mateo County, a number of factors of possible significance were noted.Of the 577 persons examined, 243 were referred to private physicians for a total of 377 conditions requiring attention.Obesity and hypertension were the most common causes for referral. More women than men were overweight. Anemia was noted more often in women than in men. Serious anemia was of higher incidence in the higher age brackets. In a number of cases in which there was high glucose content in the blood there was no trace of sugar in the urine.Abnormally low content of ascorbic acid in the blood was of high incidence among persons of low income, of lesser incidence in the middle income group, and did not occur in persons in the high income group.