Threat of Cancer, Leprosy, HIV-AIDS and TB

Speakers:

Dr. S. D. Gokhale, ILU Health Alliance

Dr. P.L. Joshi, GOI

Dr. Indranath Banerjee, WHO

Dr. K. Karthikeyan, WHO

Dr. Suvanand Sahu, WHO

Mrs. Indrajeet Pannu, Global Cancer Concern.

Mrs. Harsaran Bir Kaur Pandey, WHO

Introductory Remarks: Dr. Karthikeyan

The seriousness and danger of diseases like HIV/AIDS, Cancer, Tuberculosis (TB) and Leprosy are known to everyone. Shri B. G. Deshmukh, former Cabinet Secretary, is one of the most respected civil servants in this country. He is the President of the Community Aid and Sponsorship Programme and the Vice President of the International Longevity Centre in India. Dr. Gokhale, an eminent international social scientist, administrator, researcher, writer, and editor has been the inspiration for this programme. He is the Chairman of the International Leprosy Union and has served as the President of International Federation on Ageing for two terms. He has also been consultant to the Government of India, the United Nations, particularly UNDP, UNICEF and WHO. Dr. P. L. Joshi, Deputy Director General (Health Services), Government of India, is also a fellow of National Academy of Medical Sciences. He was the chief of NACO. Dr, Banerjee is an MD in Preventive and Social Medicine. He is currently working as National Professional Officer, Leprosy and Neglected Tropical Diseases at the WHO. Dr. Kumaraswamy Kartikeyan is currently the National Consultant for training at WHO, New Delhi Dr. Sivananda Sahoo is the National Professional Officer for TB at WHO, New Delhi. He coordinates the technical assistance provided by WHO India to the Government of India’s revised National TB Control Programme and also collaborates with other technical partners and donors for TB control in India. Dr. (Mrs) Harsharan Dev Kaur Pandey is a communications consultant, film maker and writer, working mainly in the areas of health and development..

Inaugural Address: Shri B. G. Deshmukh

These four diseases are not only going to affect the present generation but also the generations to come. The Constitution of India guarantees the right to health, but to make this right available to every citizen, these four diseases must be properly tackled. HIV/AIDS is peculiar combination of medical and  social tragedy. Despite advocacy in many parts of the country, the threat of HIV/AIDS has not yet been fully comprehended and therefore has not been accorded proper attention. TB is a very ancient disease that is still lingering and has taken a heavy toll of human life. TB affects all sections of the society, contrary to the general impression that it affects only the poorer people. It has developed resistance to the multi-drug treatment, thereby increasing the challenge of fighting it. Unfortunately, no new medical treatment has come up and the general impression is that no effective treatment is available. The cost of medical treatment is very high, especially in the developing countries, and bringing it down also remains a challenge. Cancer can affect anybody of any age group. Its cause remains unknown and once acquired, a sense of inevitability and absolute helplessness creeps into the person. Leprosy is another ancient disease that has both medical and social repercussions. Leprosy ruins the life of not only the affected person, but also of his family. Though its treatment is possible now and medicines available, the battle is yet to be fought against the misperception that a person affected by leprosy has to a social outcast, rather he can be a member of the society. Hence, social rehabilitation of the affected people is an important aspect of these diseases. Apart from proper medical treatment, advocacy is absolutely imperative to spread awareness and make proper treatment available and for the proper rehabilitation and social acceptability of the affected people. These diseases must be tackled in order to guarantee the constitutional right of every citizen to have a good and healthy life at an affordable price, to allow everyone to live happily and the nation to prosper.

Dr. Gokhale

Karl Marx once wrote that if one person dies it is a tragedy; if millions die, it becomes statistics. The people who suffer and die due to HIV/AIDS, TB, Cancer and Leprosy, cannot be ignored as statistics but must be viewed and discussed as a human problem. Being a human and social problem, the community must define its role in tackling them. One commonality among these diseases is the stigma attached to them. Stigma is a community reaction on a continuum, beginning with the identification of the disease to either the end of the patient or the complete cure of the disease. It becomes a major social concern because often people affected by these diseases are not accepted in their workplaces and sometimes even in their families, rendering them as faceless citizens. The root of stigmatization lies in the community. Hence, the role of the community and the family must be identified and defined; whether people suffering from these diseases would be left alone to fight their own battle or whether the family and the community would empower and strengthen them to help  fight and win over the disease

Dr. P. L. Joshi

While HIV/AIDS, Tuberculosis and Leprosy are communicable diseases, i.e., diseases which spread in the community from one individual to others, the syndrome of cancer is a non-communicable problem and its prevention is associated with primordial prevention, i.e., understanding the factors that lead to the disease before it occurs. Though it is claimed that leprosy has been eliminated as a public health problem at the national level, however, fresh cases still emerge, mainly because it has a very long incubation period of 20 years or more that eventually get manifested. Fortunately, its cure is available in India since 1983, which led to the switch from national leprosy control programme to complete eradication programme. The distant goal is of zero transmission, yet about one lakh new cases of leprosy are reported every year across the country. Hence, challenge of TB and HIV/AIDS as communicable diseases persists as public health problems and must be addressed seriously.

The greatest challenge of bringing effective control of these diseases is community participation. Mobilization and empowerment of the community is very essential in the preventive of control of these diseases. Risk perception is important bring about a in the community, which then translates to risk reduction. However, this has not been achieved; the family of the affected person and the community ostracise him on assumption about the reasons of acquiring the disease, without  thinking about the ways of reducing their risk. Although health is a State subject, but these are national public health problems and the Government of India has taken some major initiative in tackling them by providing funding and support to programmes that address these diseases.

The National Rural Health Mission (NHRM), a new initiative by the Government of India, launched in April 2005, has certain parameters and indicators to bring down mortality, like infant mortality rate, maternal mortality rate and the total fertility rate. Several steps have been taken to achieve these health indicators. First is the increase in the allocation for the health sector from about 0.9 per cent of the GDP in the previous Five-year Plan to almost 2-3 per cent of the GDP. Second is the flexibility in implementation of the programmes. NHRM is not a straight-jacket programme; depending upon the need, the States can formulate their action plan and approach the Government of India for technical support and funding.  Community involvement is the main initiative under the programme, to spread awareness and make the services accessible to more people. One worker, known as ASHA (Accredited Social Health Activist), who is literate, trained and empowered in dissemination of information, is deputed in every village to make people aware of the programmes. In order to improve the quality of the services, for the first time Indian Public Health Standards have been laid down for each category of the hospitals, like the primary health centre, community health centre, district hospital or the medical colleges, in terms of the number of beds, nurses, medical manpower and other equipment. Programme monitoring is now based on community-monitoring model, where the people are involved supervising its implementation.

Dr. Sivananda Sahoo

Over 9 million TB cases are estimated globally every year. India and China contribute the maximum to these 9 million, partly because of their population and partly because TB is very common in these countries. Globally, 22 countries have been identified, which account for 80 per cent of the worldwide TB cases. Among these ‘high burden’ TB countries, India ranks number one in terms of the number of cases. The annual incidence in India is 1.9 million, which is more than China and constitutes 20 per cent of the global incidence. But the rate of incidence, i.e. TB cases per lakh population, India ranks 17 among the 22 countries. In many countries of Sub-Saharan Africa, the rates are higher because the population is small but, the numbers contributed to the global estimates remain small. Hence, any progress in global TB control requires TB control in India.

TB burden is expressed in three terminologies, incidence, the new cases happening in a year; prevalence at a given point in time, the number of patients in a year; and the number of people dying of it. Out of the estimated 1.9 million cases of incidence in India, about 0.8 million are smear positive, i.e. they have the ability to transmit the disease to others and therefore must be diagnosed early and effectively cured. The currently estimated prevalence in India is more than 3 million cases and the annual death is over 300,000, despite the existence an effective cure. TB infection is not the same as the disease. 90 per cent of those infected may never have disease or its symptoms in their lifetime. Only about 10 per cent of them break down during their lifetime into active TB disease with manifested symptoms. Only the disease requires treatment, not the infection. However, it is difficult to identify people who are infected but do not manifest any symptoms and there is no tool to prevent them from converting into active disease. Hence, every infected person bears the risk of converting into the disease during his lifetime but, the risk is as low as 10 per cent. Among the conditions which increase the risk from development of infection to TB disease, the strongest risk factor identified so far is co-infection with HIV. Therefore, any HIV control activity would also benefit TB management. The other relatively low-risk but frequently prevalent factors that increases the risk of conversion from infection to the disease are diabetes, smoking and poor nutrition.

There are several first-line and second-line drugs that are used in TB. Drug resistance develops when the drugs are not effectively used; either the drugs were sub-optimally prescribed or the patient did not adhere to the prescription. The challenge of TB treatment, unlike any other bacterial infection or disease, is that it cannot be cured in a week’s time by antibiotic, the patient needs to be engaged and made to adhere to the treatment for at least six months, though the symptoms may disappear in the initial two or three weeks. .However, dropping out of the treatment or using un-standardised and sub-optimal regimens could lead to drug resistance. In Multi Drug Resistance (MDR) TB, resistant is developed against two of the key drugs used in its cure, INH and Rifampicin. Studies in India have confirmed that the level of MDR TB is less than 3 per cent and so the other 97 per cent would be susceptible to the two key drugs and therefore, can be effectively treated. Patients undergoing ring treatment, those with a history of being treated partially, have a higher proportion of drug resistance that could range between 12-17 per cent. Hence, TB patients must be treated well and cured during the first time itself. Chances of curing the patients when they come for re-treatment, i.e. after the initial treatment, are very less. In terms the proportion of HIV in TB patients, in certain parts of Sub-Saharan Africa, more that 50 per cent of TB patients are co-infected with HIV. Fortunately, India does not have that problem. According to global surveys, published in the WHO Annual Global Report, it is estimated that in India 5 per cent of TB patients also have HIV infection, which is fortunate.

A study conducted in 2000-2003 has shown that TB is not uniformly distributed all over India. From the as annual risk of TB infection the incidents of TB were worked out to conclude that the north and the west zone have higher rates, the highest being in north and the lowest being in south. TB mostly affects adults in their economically productive phase of life, which impacts their ability to earn, causing an economic loss for the family and for the country as well. TB also has many social impacts, children often get thrown out of school and women are rejected by the family.

Before 1940, no drugs were available for treating TB. So the sanatorium approach was adopted. The BCG vaccination, discovered in 1948, could only prevent severe forms of TB, specifically developed during childhood and did not have any impact on reducing adult pulmonary TB. BCG is still part of the immunization programme mainly to reduce child mortality due to TB. 1950s and 60s saw a lot of TB research in India and the discovery of many drugs by the TB Research Centre, Chennai, and the National TB Institute, Bangalore. The treat shifted from the Sanatoria approach to the antibiotic and ambulatory approaches. In 1962 Government of India launched the National Programme for TB and a 1992 review of the programme showed that only 30 per cent of the estimated patients were diagnosed under the programme and of them only 30 per cent were successfully treated. In 1993 some pilot projects were set up using the internationally recommended strategy of DOTS. The strategy was actually recommended by WHO in 1994, following which, many countries started pilot projects on DOTS. This was found to be successful and was scaled up in 1997-98 as the Revised National TB Control Programme (RNTCP), beginning at the district level and fully covering the nation only in March 2006.

A six-component strategy, one of them being DOTS, was evolved in 1994 as a result of a WHO Assembly Resolution. It was translated into guidance for some countries in 1999 and  expanded in 2002. Also, the Millennium Development Goals of 2000, Goal 6, Target 8, Indicator 23 and 24 are relevant to TB control. The prevalence of TB and deaths caused by it must be reduced to half of the 1990 levels by 2015. One of the key elements of Indicator 24, a process indicator of reaching the goal, is that at least 70 per cent of the infected cases must be detected and at least 85 per cent of that must be effectively treated. The strategy is to detect and effectively cure the infectious TB patients to prevent them from spreading it to others. This Stop TB Strategy was launched in March 2006 and at present it is globally recommended for countries to control TB. Though DOTS is not new, it has been remodelled and reworded to include many things that were developed after 1994. It has now become a political commitment. Cases are detected using bacteriology, there is standardised treatment, effective drug supply and a monitoring system. Addressing TB associated with HIV requires some special collaborative efforts between HIV and TB programmes. Strengthening the health system is imperative because TB services are curative, strategies based on early detection and cure, and cannot be delivered without a strong health system.

The health system in many parts of the country requires a lot of inputs. The International Standard on TB Care (ISTC) has been developed for the NGOs and other health entities, outside the Government Health Department, which are unlikely to capture TB cases. All providers must conform to the existing 17 standards, failing which their TB care would be deemed sub-optimal. Empowering people, community participation in the programme, improving accessibility and addressing the social issues are also necessary. The Patient Charter lists out the rights and responsibilities of a TB patient. Research pertaining to new tools and better operationalization of the existing ones has been realised as a key element in the Stop TB Strategy. There are lot of diagnostics in the pipeline regarding new tools, which could change the way TB is diagnosed. One of them, recommended by WHO, uses molecular techniques to diagnose TB in two days rather than waiting for culture to mature for weeks. New drugs are also being developed. The objective is to reduce the duration of the current first line treatment from six months to four months, then to two months and eventually to a two-week course. Also, drugs are required that can deal with MDR-TB, where the key first line drugs have been rendered ineffective. Research is in progress on vaccination as well.

Limited information is available regarding the impacts of the efforts that have been made to fight TB. Mortality has been estimated to have declined from 42 per 100,000 population in 1990 to 28 per 100,000 at present. Yet, too many people die of a disease which has a cure. The serial prevalence survey and the annual risk of TB infection survey, conducted in the Tiruvallur district by the Chennai-based TB Research Centre, show a 6 per cet drop in the annual risk of TB infection, especially after the introduction of DOTS in that area. More studies are being planned nationwide and some sentinel sites are being set up that will yield more representative data from India.

In India, 1.5 million cases of TB are being treated every year, which includes not just pulmonary cases and smear positive cases but also comprise of spear negative pulmonary cases and extra-pulmonary cases. DOTS Plus, which is management of MDR-TB, has been started in the states of Gujarat and Maharashtra, with a plan of scaling it up to all states. Public-Private Mix (PPM) is being encouraged and a large number of NGOs, medical practitioners and medical colleges are now participating in TB control activities and in Advocacy, Communication and Social Mobilisation (ACSM). Though at the national level India seems to have achieved the target of 70 percent detection of infected cases and 85 per cent treatment of them, the detection and cure rates at the district-level are below the global benchmarks. A lot of challenges persist; ensuring and maintaining the quality of services are themselves big jobs. TB control is not the responsibility of the government alone; every Indian citizen has to share the responsibility. The government can only plan the services and make them available but to enable people access those services is the role the community and the civil society, which need to play a more proactive role.

Dr. Pannoo

Realising the magnitude of cancer scenario in India, Late Maj. Gen. Pannoo decided to set up a full fledged organisation working for the cause of cancer in India. Global Cancer Concern India (GCCI) was founded in March 1998, under the Indian Trust Act of 1882, as a not-for-profit NGO. Its mission is to combat cancer at all stages through a holistic approach to prevention, early detection and advancement of palliative care to patients, along with rehabilitation of cancer bereaved families, to enable them to live with dignity and self esteem. Each year cancer attacks over 9 million people globally. Developing countries account for over two-thirds of cancer patients. One in about 15 men and one in about 12 women in urban areas could develop cancer in their life time. Unfortunately, India is one of the largest contributors to the swelling number of cancer patients. In India 75 per cent of cancer patients are in the terminal stage. The percentage of cancer fatalities in India is perhaps the highest in the world due to ignorance, lack of timely detection and a very large population. GCCI is involved in all stages of the cancer journey, detection, diagnosis, palliative care, rehabilitation and capacity building, its areas of work being awareness and prevention.

Awareness includes developing and circulating educational material for imparting information on cancer and advocacy through different groups. Awareness is spread through camps, reaching out to remote areas in the villages and explaining case history of the victims to people. Lot of positive response emanate from the patients themselves. Schools are the major venues for spreading awareness, children being the best ambassador. Prevention is brought about by spreading awareness about causes of cancer, community involvement and campaigning against excessive use of tobacco, alcohol, drugs, etc. Detection is done by spreading information about the symptoms of cancer, providing know-how about hospitals and diagnostic centres where such symptoms could be further investigated. GCCI has held detection camps and set up a diagnostic centre in Kishangarh, a village next to Vasant Kunj.  With the help pf the Government of Haryana, a dispensary has been set up that is expected to look after 200-300 daily. Palliative care is meant for patients who are at the last stage of cancer, when no treatment is of any help. Palliative care tries to elevate the symptoms so that the patient can live at home, with reduced fear and anxiety about his family, and supports the patient through stages of grief. It helps patients and families to look beyond the disease and includes bereavement support and follow-up and home care service for terminally ill patients through mobile cancer care medical teams.

 Dr. Kumaraswamy Kartikeyan

In 1986, the first HIV case was detected simultaneously in Chennai and Bombay and gradually the prevalence is picking up, with Nagaland and Manipur being highly affected. Today almost every state in India has HIV patients. According to recent estimates HIV/AIDS prevalence in India is between 0.25 to 0.36 per cent, which translates into 2.5 million affected people. HIV/AIDS is primarily confined to the high risk groups of sex-workers and drug users. However, has invaded the general population though bridge population, who are clients of sex-workers. A recent survey found that almost 6 per cent adult men have casual sex with a non-regular partner. The bridge population constitutes of truckers and migrant labourers.

The National Aids Control Programme has a prevention component, a care component and a surveillance component. The prevention component is classified into prevention towards high risk population and prevention towards low risk population. In the high risk population, prevention strategies are different for commercial sex workers, for men having sex with men and for those injecting drug users.  Prevention strategies in high risk population must include proper STD treatment, condom promotion and multi-sectoral collaboration. Proper awareness must be generated, the youth must be addressed, the adolescents must be sensitised and interventions must be made in work places and industries that employ migrant workers. The care component includes prevention of mother to child transmission. Three common ways of HIV transmission are sexual transmission, blood transfusion and from mother to child. Mother to child transmission can be prevented by single drug, management of co-infection and the introduction of Anti-retroviral Therapy (ART). The government started distributing ART medicine since 2004 and it is 70-80% effective. The last component is surveillance, which is undertaken every year between October and January. There are many surveillance sites in the country based on their results figures for the country are estimated. There are 4027 centres across India for counselling and testing and 157 centres for ART. The total number of patients on ART is 1, 34,000, including almost 9500 children.

Dr. Banerjee

The mention of leprosy evokes a of grotesque appearance, a person begging, who has been shunned by the society. But this is not necessarily the image of leprosy. Leprosy is primarily a disease of skin and smaller nerves, which if left untreated, can affect other organs of the body and also cause deformities. This does not preclude a person from living a normal life. Leprosy is caused by a bacterium, called mycobacterium lepri. Nine out of ten people are naturally immune to leprosy; only a susceptible person, who has remained in long contact with an untreated person, can get the disease. Merely touching leprosy patient, shaking hands and dining together will not cause leprosy. It spreads through the secretions from the nose and mouth of an untreated patient, who is in an advanced stage of leprosy. The levels of symptoms in leprosy is not similar for all the patients, some might have a milder form of the disease, which is called called posi bassileri in the medical language, while some might have an advanced, which is called multi bassileri. Actually, leprosy spreads from a multi bassileri patient. In addition, even one dose of medicine is sufficient to kill most of the bacteria and make the patient incapable of spreading the disease anymore.

The early signs of leprosy are light-coloured or coppery patch on the skin that is insensitive to touch and pain or an enlarged nerve or any deformity. Leprosy is fully curable, the medicine being supplied free of charge by WHO and distributed through the government health system. Every government health system has facilities for diagnoses and treatment of leprosy, available free of charge. For posi bassileri, two kinds of medicines are available and the treatment lasts for six months, while for multi bassileri, three different types of medicines are given for one year. Without the deformities caused by it, leprosy would have been like any other skin disease. Deformities occur only in about 5 per cent of cases that are neglected and untreated. It is possible to treat them by medicines initially and later by surgery. Grossly deformed patients cannot spread the disease because the deformities are residual; though the disease gets cured, the deformities remain. Moreover, Leprosy is not hereditary.

Early efforts to control leprosy in the society were by social, religious and faith-based organisations. There was no treatment for leprosy and patients were kept outside the society on the assumption that segregation would prevent the disease from spreading. In 1943 Dapsone was discovered, which was able to effectively treat patients of leprosy. The National Leprosy Control Programme, launched by the Government of India in 1955, was able to treat many patients and for the first time patients did not have to live in a leprosy home, they could live in their houses while being treated. However, by the 1960s it became apparent that the Dapsone treatment was ineffective and lengthy. New research developed the Multi-Drug Therapy (MDT). When the National Leprosy Eradication Programme was launched in 1982-83, there were about 40 lakh leprosy cases in India. It can be hailed as one of the biggest successes in public health that the total number of cases under treatment at present is below 1 lakh. Till now about 12 million people have been cured in India with MDT. There are about 3 lakh people who have leprosy related deformities, 60000 of them living in colonies. There are about 100 leprosy colonies in India and no new colonies have come up in the last 10 years.

Leprosy is inextricably attached with social stigma. Deformities and the possibility of being infected led to the separation of the patients from society. The social stigma arose from associating the disease with divine retribution, past sins, eating habits and immorality. Many laws were passed against leprosy patients to keep them out of the society causing human rights violations. It is important to know about leprosy and tell other people. People with leprosy must not be discriminated against. Preventing a person from doing any social activity because he is a leprosy patient constitutes human rights violation. Laws that discriminate against people affected by leprosy are still existent. Finally, the term ‘leper’ must never be used since its a demeaning term and therefore constitute human rights violation.

Dr. Kartikeyan

 According to scriptures in many religions, people who get leprosy are sinners. In Japan, the latest version of the Bible was amended to state that leprosy has no connection with sin or virtue. It is important to appropriately amend religious scriptures and writings.

Dr. (Mrs) Harsharan Dev Kaur Pandey

 All patients are consumers for the health sector and any health intervention by the later requires an act of faith from the former. The relation between the health sector and the common person must be built on trust. Everyone wants their health to be secure. The less informed will tie a thread around their wrist, they wont go out of the house on certain days etc. Those who are slightly better informed accept the medical advice given to them as an act of faith. The educated people tend to accept medical advice because they believe it is based on science. Sometimes people either do not have access to information, or lack the knowledge to understand what is good for them. Communities are selective; they do not accept everything that they are told. They might follow some of the advice is they hear others in the village, their neighbour, their relative following the same, like a word of mouth advocacy. But when plans are made, sitting in the offices in the cities, connection with what is meaningful for the patient is absent. To achieve the goal of health, programme managers need to build and maintain a relationship of trust between themselves and health workers and both of these with the public. Availability of information is the key to empowering people. Some of these diseases also require behavioural change, which become possible only when the community has the faith in the health system and trust the advice of the health carers.

More recently, the WHO is also learning this. Former Director General, Dr. J. W. Lee,  while speaking about Avian Influenza said, “Only recently we at WHO come to understand that communication is as critical to outbreak control as laboratory analysis of epidemiological investigation”. Despite the availability of the programmes and medicines, communication is absent. Trust needs to be build, patients need to know that what the health sector is saying is plausible and credible and therefore, develop belief in them. People must be informed about the dangers to their health. It is also important to tell the audience about the unavailability of some information at present, which might be upgraded in future. It is a two-way communication, so it is important to listen to the public. Ways must be devised to communicate with the patients, their family and the community where they live. Forms of communication could be posters or wall–writings, using suitable idioms, making mouth-piece of people who are not afraid to stand up, information outreach and advocacy with policy and decision-makers and using the media appropriately. The international agencies and the Government of India have some excellent guideline and programmes but, unfortunately they are not reaching the masses. There is a need to ensure that these facilities actually exist and everybody get to know about them.

Dr. Tuli

 Though the Government has excellent health programmes in place but, unfortunately they are not being implemented because according to the National Health Policy, there should be an integration of all the recognised health systems. However, healthcare in India is practically being controlled only by the allopathic system. The National Health Programme and Health for All by 2000 collapsed primarily because it was entirely based upon the allopathic model yet, most importance is accorded to the allopathic model. The Department of AYUSH, set up by the government, was not integrated with the Ministry of Health and the Department of Health and Family Welfare. The existing broad healthcare infrastructure needs to be integrated and upgraded by the training healthcare workers at all levels. The integrated model is most important because human being is more than a body and healthcare is not just scientific. Science sees only the physical body but, human being is a manifestation of energy, which is not visible to the science. Spiritualization of the health services is considered unscientific. ‘Spiritual’ implies to deal with the spirit that is the energy of the human being. The medical science and the allopathic model do not address this aspect of the physical human body. Hence, there must be integration and spiritualization of the health services, which possible by sensitising the healthcare infrastructure and manpower. Incorporating this into training and every treatment modality will make them far more successful.