This is an editorial on the Workshop organised by the DGHS, 11-12 September, 1991, to thoroughly review the NTP with respect to its overall achievements and shortfalls from expectations. Based on the deliberations, attended by representatives of various international agencies, several recommendations for action, to improve the NTP, were made. It was suggested that a Task Force be set up, with proper terms of reference and a suitable budget to oversee that the recommendations were implemented and that necessary corrective actions were taken, till the time of the next review.

This is a segment of the Bhore Committee’s report pertaining to TB and focussing on the history of certain TB organisations and their services. The desirability of establishing an All-India association for anti-TB work and of promoting closer co-operation between Government and voluntary agencies engaged in fighting TB was emphasised by Dr. Lankester as the result of his survey of its incidence in India. This suggestion was implemented in 1929 when it was decided that the funds, raised by public subscription, should be devoted to the promotion of anti-TB work in the country and the King George V Thanksgiving Anti-TB Committee was formed. The organisation consisted of a Central Committee (CC) in New Delhi and of branch Committees in the Provinces and States. The CC undertook the organisation of special training courses in TB for medical men at the All-India Institute of Hygiene and Public Health and the preparation of propaganda material. The CC’s Organising Secretary focussed attention on the TB problem through various activities. The next step in the All-India, organised, TB work occurred when, the excellent responses from the people and Princes of India to an appeal, led to the organisation of a broad-based campaign, in turn, resulting in the formation of the TAI, in 1939. The King George V Thanksgiving Anti-TB Fund was merged with the funds of the TAI. The CC of TAI provided expert advice and co-ordinated the activities of the Provinces and States. TAI’s main functions were the standardisation of methods, the promotion of consultation by conferences, the training of various types of TB workers, the stimulation of research and education of the public in anti-TB measures. The outbreak of the second World War crippled TAI’s activities to some extent. Nevertheless, three measures (the establishment of a TB clinic in New Delhi, the creation of the Lady Linlithgow Sanatorium at Kasauli and the formulation of the home treatment scheme as an essential part of the anti-TB campaign), attributed to Dr. Frimodt Moller, TAI’s Medical Commissioner, significantly impacted TB work in India.

This paper, read at the 10th TB Workers’ Conference in Mysore, 1953, emphasises that, typically, non-official agencies in most countries have initiated the fight against TB and lists the essentials of TB services. The government’s responsibilities in TB control are described and there is a detailed account of the origin and history of non-official anti-TB effort in India. Three key factors are offered for consideration in planning the future of TB Associations and their work in India: 1) The importance of definite programs such as educative propaganda, welfare activities and, starting and running institutions for TB patients, 2) The composition and control of TB Associations, 3) The functions of the central Association.

The focus of this paper is to make known the extensive incidence of TB in India in the early sixties. Various prevailing factors such as a lack of sufficient anti-TB clinics that are properly equipped and adequately staffed, unsatisfactory housing conditions and Government efforts to counter TB, non-availability of sufficient treatment drugs and lack of patients’ access to these drugs, have contributed to the high prevalence of TB. To overcome the huge problem, it is recommended that voluntary bodies and individuals should work, in addition to the Government, to strengthen the campaign against TB. Particularly, TB workers could help in strengthening voluntary TB Associations in the country, so that these Associations can really form the people’s movement against TB and fill the lack that exists at the moment between anti-TB schemes and the individual patient.

At the International Congress on TB held in Sept. 1960, the place of voluntary organisations in the anti-TB campaign, in view of the changing pattern of social life in different countries, was discussed. Both newly independent countries and countries where TB was more or less controlled, emphasised the need for voluntary organisations everywhere to redouble their efforts against TB. Other key conclusions were that voluntary organisations should have wide representation drawn from different sections of the community including medical personnel to provide technical assistance, they should organise practical service programmes such as health education, case-finding, social services and rehabilitation, they must be independent of government control but work in very close co-operation with government agencies in planning and executing TB control programmes. It was opined that voluntary organisations can demonstrate the effectiveness of different types of programmes in many fields and these could be handed over to the government after a time, if necessary, and, that international conferences were a useful forum to help these organisations in formulating their plans and programmes.

The co-operation of non-governmental agencies which are generally represented through TB Associations is considered essential in making domiciliary service programmes successful in all aspects. It is recognised that the government has not been able to ensure an adequate supply of treatment drugs. Even when an adequate supply exists, there is a problem in getting these drugs to individual patients and ensuring that they take the drugs regularly for the prescribed period. Therefore, these non-governmental organisations can help in the distribution of drugs, in monitoring drug intake and checking drug default. They can organise constructive programs yielding tangible results such as the TB Seals Campaign. It is suggested that each district have a set of voluntary or paid workers who would assist in the above activities. For the TB control programme to be successful, there should be active co-operation and partnership between official and non-official organisations and, the TB associations should re-orient their programme in order to fit in with the scheme for domiciliary treatment of TB patients.

The article describes the two views of voluntary TB associations and focuses on the role of voluntary associations viewed as the all-level type, wherein, local voluntary units are confederated in the National TB Association. The government, the medical profession and the general public or the voluntary association, as its representative, are the three partners in the TB programme with specific functions. The voluntary associations are roughly classified into two groups based on whether the TB control programme in the specific country is recent or has been well-established for long. The prospective role of voluntary associations in developing countries include setting up and encouragement of local voluntary units, co-ordination of the local units, stimulating the government by initiating certain pioneering activities, maintaining a close relationship with the medical profession and promoting international contacts, especially, within the International Union. The work of the TAI is mentioned as a stimulating example that the above ideas can be realized in a developing-country context. The suggested role for voluntary organisations in developed countries include promoting epidemiological research after consultation with epidemiologists, the adoption of a sister organisation in one of the developing countries and extending activities beyond TB control to incorporate other respiratory or vascular diseases.

The abstract is for the segment of a panel discussion on the above topic, held in Paris, Sept. 20-21, 1962. To provide a broad picture of the TB problems globally, the percentage of children at the age of 14 showing a specific reaction to the standard tuberculin test as evidence that they have been infected with tubercle bacilli and, the proportion of adults excreting tubercle bacilli through the respiratory tract as found by the prevalence surveys of representative population groups, were presented. These figures indicated the highly uneven distribution of TB in the world. At one end, there were countries where 1-3% of all adults were sources of infection. In these countries, about half of the children were infected at the age of 14. At the other end, in some countries, the prevalence of TB was so low that only one of 2,000 or 5,000 adults were found to excrete tubercle bacilli and only 1-2% of the children at the age of 14 showed a reaction to the standard tuberculin test. Experience in the means for controlling TB was also unevenly distributed in the world, with an inverse relationship seen between the extent of prevalence of TB and the existence of experienced personnel and facilities. The main problem in the global attack on TB was to supply the developing countries with the necessary experienced personnel and the means to get the TB control programme started. It was suggested that the specific government should take the primary responsibility for the control of TB and that the official health authorities should provide the means and the personnel for implementing the programme. Also, the population must be prepared and educated to accept the programme, through voluntary efforts.

Some of the problems in the organisation and development of voluntary TB associations, particularly, in developing countries, such as the problems in building up local and national associations and getting all voluntary work properly co-ordinated with national oganisations and with the IUAT, are discussed briefly.

The author addresses some typical questions of overseas societies concerning the various roles and activities and the factors to be considered in constituting a voluntary organisation. It is concluded that while it is impossible to foresee every combination of circumstances which may surround the birth of a voluntary TB association, personal enthusiasm, patience, and mental flexibility can overcome every obstacle. In creating a voluntary society, the first step to educate the community as a whole, is being taken. Such a voluntary association can be thought of as a working model which reflects the state of general enlightenment. For this slow process of education, there is no substitute. No hygiene or medical services will be really effective unless the will-power and interest of a significant number of ordinary people are aroused.

The Anti-TB Association of Thailand was organised by the senior members of the Thailand Medical Association in the forties. The main obstacles faced by the Association, from the beginning, were the scarcity of funds and a lack of sufficient volunteer personnel. Gradually, as these obstacles were overcome to some extent, the Association’s activities expanded in many directions and a number of TB clinics, both static and mobile, were set up in various districts of Bangkok, allotted by the Health Department. Increasing awareness of Association members regarding the programme objectives helped gain their active support for programmes and, with expansion, the Association shifted its responsibilities to work with special groups of people such as school personnel and factory workers rather than the general population which was cared for by the Health Department. The recruitment of technical staff, especially, well-trained doctors and nurses was a major problem. To cope, the Association was getting the Ministry to send doctors from the TB Control Division to work in the clinics run by the Association. The Association was attempting to develop local associations in various parts of the country.

There seems to be a wide field for volunteer activity in TB control, both in creating the right atmosphere as well as in actual participation in the TB programme. But in order to make the best possible use of volunteers, it is indispensable that the voluntary association has well defined, clear and practical ideas on technique and organization of a modern public health anti-TB programme. Only then, can the association give the necessary guidance to its volunteers who want to serve the cause.

The Advisory Committee of the IJTB suggested an operational research project, in association with voluntary organisations, on the working of the DTCP, similar to the Tumkur Project in India and the Jaffna and Kinta project of Ceylon (Sri Lanka) and Malaysia respectively. The project was to be conducted simultaneously in 4-5 districts in different parts of the country, under the joint sponsorship of the Central Association and the State/District branches. The project primarily envisaged having a number of voluntary workers to assist in the implementation of DTCP by motivating people to attend health facilities for diagnosis, by monitoring patient’s drug intake and checking drug default, by disseminating health education on preventive measures in TB, to improve people’s health consciousness and to encourage people to avail of existing TB services and facilities, by raising funds to subsidise the project and to provide financial assistance to patients, if necessary. A detailed discussion of the suggested set-up for the project and estimated cost is included.

The contribution of voluntary organizations to the success of control programmes in the past, in countries where TB prevalence is now low, has been appreciable and this fact should be recognized. The Japan Anti-TB Association and its activities are described to highlight the importance of voluntary organizations in fighting TB. The mortality and incidence rates of TB are still fairly high compared with other low-prevalence countries. Therefore, the Japan Association is urged to fight the loss of interest in TB observed in the country (similarly observed in other low-prevalence countries), as it created serious problems in carrying out TB programs, through utilizing all possible media. Encouraging the activities of women’s anti-TB societies, composed mostly of housewives in the community and having its own research institute that conducts research on TB and disseminates all the necessary information, are two unique achievements of the Association. It also conducts an international training course for participants from high-prevalence countries abroad. Fund-raising is a big problem for the association. Ways to overcome this problem are suggested.

Even in high economic industrialized countries, TB is far from eradication, while in many developing countries it remains the greatest public health problem and disabling and killing disease. In all countries even those with low TB incidence, there is need for the continuance of active anti-TB programmes at a reasonable level, with government operation of the actual programmes, but with continued public interest and support through voluntary TB associations.

The Finnish Anti-TB Association and its activities are presented to discuss the functions and role of voluntary TB associations. The primary goals of the Finnish Association are:1) improved TB programme, 2) integration of TB programme into public health services and, 3) greater co-operation with the IUAT. The operational approaches to achieving the goals include information and co-operation, for instance, in amending TB legislation, practical work directed towards patients and scientific activity. The various anti-TB activities of the Association conducted with the State Medical Board such as the BCG programme, radiophotographic programme and other independent activities of the Association are described.

The experience of the Korean National TB Association (KNTA) in fighting TB provides some useful insights on the role of voluntary associations. It is recommended that, similar to the KNTA, voluntary associations in other developing countries should cultivate intimate working relations with their respective governments. While the KNTA invested sizable financial inputs into critical sectors of the TB project at the government’s request, the latter greatly assisted KNTA’s fund-raising effort. KNTA found that people contributed more freely if they could see visible proof, immediately, and on a sufficiently large scale, of their money being utilized for their good. It is urged that voluntary associations must constantly improve to be an example to others.

Since 1850, voluntary organisations have largely benefited victims of TB. In India, the joint family system provided comfort and protection to the TB patient. However, there is an increased awareness for the patient to receive such protection and assistance from society as evidenced by the popularity of sanatoriums and other types of care provided outside homes and families. Christian missionaries took the initial step in providing systematised care of the tuberculous in India followed by several non-governmental efforts. The formation of the TAI in 1939 was a welcome centralised move on an all-India basis which also served as a link to international TB organisations. The Government of India provided active support to all voluntary activities in the country while evolving statutory TB services. The launching of the NTP in India was a turning point in the co-existence of government and voluntary agencies in the common fight against TB. The NTP’s approach to consider TB as one of many illnesses to be overcome within the GHS mobilised the services of thousands of health workers throughout the country. As the government exercises statutory powers over increasing areas of social services, there is a need for reappraisal of the concept and activities of the voluntary organisation. New ways by which the voluntary organisations can support the NTP, particularly, with the emphasis on domiciliary treatment, are recommended.

The article describes the organization and activities of the Mexican National Committee in the Fight Against TB. The Committee undertakes various activities with three entities, the government, the medical and clinical personnel and the community. Additionally, the Committee encourages meetings of scientists in this field to exchange new methods, techniques and provides information to private doctors to incorporate them into the national programme. The financial contributions of the Committee for anti-TB activities reflects the priorities in the TB programme such as the insufficient health structure of the country and of the health personnel and, the scanty participation of private doctors in the programme. This approach is in contrast to developed countries such as Sweden, where the priority is placed on the field of investigation since social assistance covers the necessities and the costs. The Committee’s main income is from the sale of the stamps that it prints annually and which are available to the public during 8 months. This event is publicised through all possible media to encourage people’s participation and awareness of the TB programme. A society has been formed to promote the value of collecting various stamps and it is expected to help acquire financial resources for the TB programme.

The first organised voluntary association was formed in UK in 1898. His Royal Highness, the Prince of Wales who was the founder president, at the time of inaugurating the `National Association for the Prevention of Consumption and Other Forms of TB', raised the famous question “If preventable, why not prevented”? We might as well ask ourselves the same question even today in India.

The first section of this chapter is devoted to a brief description of the historical background of TB associations world-wide. The rest of the chapter is concerned with the genesis and activities of the TAI. TAI’s noteworthy include the annual organisation of conferences of the TB and Chest Diseases Workers in different parts of India, the regular programme of health education activities conducted from its inception, the starting of the IJTB, a quarterly that is globally respected, and the setting up of the Technical Committee to review questions relating to the teaching of TB at various stages of medical education. Above all, the most effective and outstanding contribution by TAI has been the TB Seal Sale Campaign, started in 1950 and conducted during Oct. 2 - Jan. 26, every year. This Campaign has been the single, sweeping, all-India propaganda effort with potentialities to involve the masses in the anti-TB movement and canvass their full participation in implementing the National Control Programme. Every year, the people of India buy over 30 million TB Seals on an average and use them on their mail, though the seals have no postal value. It is suggested that the TAI take up a wide variety of measures including serving as watch-dogs of official programmes, determining the community’s needs concerning TB control, educating the public to promote domiciliary treatment and to reduce drug-default.

Community involvement in the TB control programme has always been considered to be a very important factor. The Rotary Club of Surendranagar District, Gujarat, was entrusted with the work of organising active case detection camps in the district. The case detection work was done by a mobile odelca unit and the laboratory team. The results were handed over to the Rotary Club. The Rotarian volunteers, with the help of the DTC, supervised the regularity of collection and consumption of treatment drugs. Fifteen(15) such camps were held for the chest symptomatics. A total of 5,648 mini X-rays were done and 5077 sputa were examined. A total of 1,395 radiologically active cases were detected. The involvement of volunteers significantly helped in: 1) Early and increased detection of cases, 2) Reducing the financial burden of the treatment by providing the needed drugs to all detected cases, 3) Increasing case holding by voluntarily contacting all the patients in the area, 4) Increasing the public’s awareness about the TB problem and helping in providing the necessary health education. This collaborative effort resulted in 78.3% of the cases completing the treatment. It was concluded that community involvement, as in this study, improved the performance of the TB control programme.

Volunteerism is what is most noble in humans. And it stands to reason that volunteerism is fully exploited in the service of mankind. That voluntary organizations can meet many needs and aspirations of the people needs no demonstrated proof. The idea to make these organizations the corner stone of social development has been attempted but not fully exploited yet. That is why our government has decided, as policy, to associate voluntary organizations in all their programmes for the people, and help them financially to participate. Should voluntary organisations allow a dilution of the voluntary spirit by having in their organizational structure too many people to hold position of power ;in an ex-officio capacity? It goes without saying that some officials are as good as any run of the mill volunteer.

The inadequate collaboration and co-ordination between the voluntary and governmental institutions should be highly detrimental to patients who after receiving some treatment soon get lost to further treatment because they are not properly referred to health centres near their homes and cannot continue their treatment at voluntary institutions, either, for obvious reasons. The apparent inability of a few voluntary organisations to adapt their activities in line with the modern concepts of TB control may work to the disadvantage of the TB programme of Gujarat state.

The editorial makes a case for encouraging the partnership of NGOs with the NTP to fight TB. The attitudes and perceptions of the Government, on one hand, and the NGOs, on the other, make this a complex proposition. Several reviews of the NTP’s performance over the last three decades concluded that the NTP’s achievements were below expectations despite notable progress made in some directions and that the programme was not likely to improve without better programme management and active participation in TB control activities by the people. Therefore, the Government, after the Surajkand deliberations in September 1991, accepted the recommendations of the TAI, one of which was the necessity to develop partnerships with NGOs. The changed facade of the NGOs, today, because of the large number of professionals that have joined them, adds to the benefits the NGOs would bring to a partnership. How the partnership should begin and the various mutual benefits for the Government and the NGOs in becoming partners are described.

A study of NGOs was undertaken in Maharashtra and Gujarat to assess the extent and the type of NGOs’ contribution to TB control and to determine ways to strengthen it. The analyses of responses to a mailed questionnaire by 77 NGOs in Maharashtra and 57 from Gujarat and, in-depth case studies of 13 NGOs, selected purposely to understand their functioning and to evaluate the effectiveness of their approaches to control TB, are presented. Regarding the nature of anti-TB work by NGOs, about 50% were dependent on public health services for one or more of their programme components and, about 40% had activities comprising case-finding, treatment and case-holding. Variations in NGOs contribution between the two states were marked. One-third of all cases detected and started on treatment by the Gujarat State TB Programme were reported by NGOs, while in Maharashtra, case-detection by NGOs was an insignificant 3.5%. More organizations and better facilities were available in Gujarat. The NGO approaches for offering anti-TB services fell into four categories: 1) Institution, Hospital or Clinic-Based programmes, 2) Use of Community-based workers, 3) Use of Public Health Services and, 4) Involving Private Doctors. Concerning technical aspects, all NGOs depended on X-ray as a diagnostic tool and most NGOs used SCC for all their patients. The weakest aspect of most NGO programmes was non-maintenance of records and failure to use proper records to assess or improve programme implementation. To improve treatment adherence by patients, NGOs used various approaches such as using part-time village-based functionaries of another health care programme and home delivery of drugs. For the NGOs, individual donations formed the most important source of funding. Ways by which NGOs and governmental agencies could support each other are suggested.

A voluntary health worker project (Operation Elsies River) was started in a high incidence TB area in the Western Cape of South Africa, in order to assist the local TB control programme with case-holding. The objective is to evaluate the effectiveness of this group of volunteers in enhancing adherence of notified TB patients to TB treatment. A cohort study was conducted with 351 TB patients (203 children and 148 adults). The data from the child and the adult groups were analysed separately. The child group was more adherent to TB treatment than adults. The supervision option with staff dedicated to the treatment of TB, such as the clinic and the SANTA creche, achieved better adherence results for pre-school children. The supervision modalities for adults did not differ in their adherence performance even following adjustment for confounders.

The supervision option provided by the volunteers did not significantly improve the adherence of adult patients to anti-TB treatment.

The setting is a voluntary health worker programme, in the Western Cape South Africa, utilizing volunteers to administer directly observed therapy to TB patients. This study describes the perceptions of health team members regarding the voluntary community health worker project. A qualitative, participatory research study utilizing focus groups.

TB was perceived by the health team to be a stigmatized disease causing some patients to be reluctant to be associated with the TB control programme. Despite the project’s dedicated approach to case-holding volunteers expressed the need to develop skills in providing more comprehensive care. The volunteers appear to administer a more personalized service to TB patients and can bridge the gap between TB patients and the health agency. Sustained evaluation and support seem to be a vital tool in integrating a volunteer project into a health team approach. Its effectiveness appears to depend to a large degree on the people involved.

The setting is a voluntary health worker programme, in the Western Cape South Africa, utilizing volunteers to administer DOT to TB patients. This study describes the perceptions of health team members regarding the voluntary community health worker project. A qualitative, participatory research study utilizing focus groups. TB was perceived by the health team to be a stigmatized disease causing some patients to be reluctant to be associated with the TB control programme. Despite the project’s dedicated approach to case-holding volunteers expressed the need to develop skills in providing more comprehensive care. The volunteers appear to administer a more personalized service to TB patients and can bridge the gap between TB patients and the health agency. Sustained evaluation and support seem to be a vital tool in integrating a volunteer project into a health team approach. Its effectiveness appears to depend to a large degree on the people involved.