health problems of tribal population groups from the state of maharashtra

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  • 7/29/2019 Health Problems of Tribal Population Groups From the State of Maharashtra

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    By Dr. S. L. Kate

    Emeritus Medical Scientist, Department of Pediatrics

    B. J. Medical College, Pune, India

    October 23, 2000

    Note: This article is taken from Immunohaematology Bulletin with the kind permission of Dr. Kate.

    Health Problems ofTribal Population Groups

    from the State of Maharashtra

    S. L. Kate

    Introduction

    Ten percent of the total population ofthe State of Maharashtra belongs to

    tribal population groups. These

    groups remain isolated, living in

    remote forest and hilly areas far from

    civilization. Majority of them have

    poor health status, peculiar health

    needs and a wide prevalence of red

    blood cell genetic disorders that

    complicates their health problems

    further. Moreover, the inadequate

    health infrastructure in tribal areas to

    deal with such complicated health

    problems is a matter of grave concern

    Preamble

    As per the recent information

    available from the Govt. sources,

    Maharashtra State ranks second in

    population and area wise third in the

    country. As per the 1991 census, the

    total population of the State is 80

    million and this is 9.33 percent of

    India's population. The total tribal

    population in the State is 7.4 million

    that accounts to about 9.3 percent of

    the total population of the State.

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    There are three mountain ranges in the State known as Sahyadri, Satpuda and Gondwan ranges. In total,

    there are 47 scheduled tribal population groups in the State and majority of them are inhabitants of these

    geographically difficult terrain. [Note: "Scheduled tribal populations" is a term applied by the British

    colonialists to groups in India who by and large successfully resisted their control in the 19th century.

    "Clans" might be a more appropriate term. -KRB]Out of these 47 groups, 17 are major tribal groups. In the

    Sahyadri ranges there are the Mahadeo Koli, Katkari, Warli, Malhar Koli and Kokana groups. Among

    Satpuda ranges, Bhil, Pawara, Korku and Tadvi are the major groups. The Madia, Gond, Pardhan, Halbi

    Otkar, and Andha are found in the Gondwan range.

    These tribal groups differ from each other in various aspects. They differ in the language they speak, in

    their cultural pattern and socio-economic categories. As the majority of these tribals living in the remote

    forest areas remain isolated, untouched by civilization, they are largely unaffected by the developmental

    processes going on in the rest of the State. Therefore, these groups remain backward, particularly in health,

    education and socio-economic aspects. We are working in the field of tribal health for the last several years

    and the health problems of the tribal population in the State can be summarized as follows:

    1. Deficiency of essential components in diet leading to malnutrition, protein calorie malnutrition and

    micronutrient deficiencies (vit A, iron and iodine) are common. Goitre of various grades is also

    endemic in some of the tribal areas.

    2. Water borne and communicable diseases: Gastrointestinal disorders, particularly

    dysentery and parasitic infections are very common, leading to marked morbidity and malnutrition.

    Malaria and tuberculosis still remain a problem in many tribal areas, while the spectrum of viral and

    venereal diseases have not been studied in-depth.

    3. High prevalence of genetic disorders mostly involving red blood cells: Genetically transmitted

    disorders like sickle cell anaemia, glucose 6 phosphate dehydrogenase deficiency and different forms

    of thalassaemia are also common. All these defects lead to the early destruction of red blood cells and

    add to the overall anaemia.

    4. Excess consumption of alcohol: The brewing of alcohol from Mohua flower and fruits has been

    practiced traditionally. However, the switch over to commercially available liquor is likely to be a

    major threat.

    5. Superstitions particularly related to health problems.

    6. Extreme poverty.

    The inadequate health infrastructure for these peculiar health needs of the tribals is also a major factor.

    There remains a conspicuous lack of maternal and child health services among the hilly tribal areas and

    consequently, the tribal demographic scenario is one of high fertility, high maternal and infant mortality

    rates. The data published by the Public Health Dept. of the State (Table 1) shows the health situation in

    tribal areas.

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    Indicators Situation in

    Maharashtra

    Tribal Situation

    Infant mortality rate 59 110

    Crude death rate 7.9 13

    Maternal mortality

    rate

    2 Not available

    LBW babies 28% 40%

    Family Size 3.8 4.2

    Delivery by TBA 86% 12%

    Table 1: Health Status Indicators in Tribes

    Among the genetic problems, we

    have conducted and in-depth study

    on sickle cell disorders. Best

    examples of genetic polymorphism

    clearly connected with disease are

    sickle cell anemia, thalassemia and

    glucose 6-phosphate dehydrogenase

    deficiency. These are single gene

    defects of the blood, totally confined

    to red blood cells. Sickle cell

    anaemia and thalassemia are the major public health problems in our country (1,2,4,6,9,10). Thalassemia is

    prevalent amongst all population groups irrespective of caste, religion and creed. However, sickle cell

    disorder is mostly confined to socio-economically backward groups, like scheduled castes (SC), scheduled

    tribes (ST) and nomadic tribes (NT).

    Sickle Cell Disorder

    This is a hereditary blood disorder due to defective hemoglobin structure. Hemoglobin is a tetramer

    consisting of two pairs of non-identical globin and polypeptide chains, each chain being associated with

    one heme group. The heme group is an iron containing pigment responsible for oxygen transport in red

    blood cells. There are four polypeptide chains (alpha, beta, gamma and delta) in the globin portion. HbA

    consists of 2 alpha and 2 beta chains HbF consists of 2 alpha and 2 gamma chains and HbA2 consists of 2

    alpha and 2 delta chains. The alpha chains consist of 141 amino acids with specific sequences, while beta,

    gamma and delta chains consist of 146 amino acids. The sequences of amino acids in the alpha, beta,

    gamma and delta chains are different from each other and very specific for that chain. Sickle cellhemoglobin sickling and hence the mutant hemoglobin is called sickle cell hemoglobin (HbS).

    The Genetics of Sickle Cell Hemoglobin

    It is well documented that the gene for sickle cell hemoglobin is located on the short arm of chromosome 11

    and has an autosomal recessive inheritance. Hence, it can manifest in two forms viz. heterozygous (carrier)

    and homozygous (sufferer). When two carriers marry, the chance of having a homozygous child is 25%

    every pregnancy.

    Diagnosis

    Diagnosis of sickle cell carriers and sufferers is possible by careful clinical examination of the patient

    supported by laboratory investigations. For developing countries like India, simple, rapid and inexpensive

    yet reliable laboratory tests are necessary, particularly, when screening has to be carried out on large

    populations located in geographically difficult areas. Such techniques have been developed in our Dept.

    that are suitable for field work and require minimum amount of blood (only a few drops). The results are

    available within half an hour and the test is very cost effective. The tests include:

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    Table 2: Summary of the distribution of sickle cell traitamong different tribal groups of Maharashtra

    Sr.

    No

    Tribal

    Group

    District Sickle Cell

    Carriers (%)

    1 Otkar Gadchiroli 35

    2 Pardhan Nanded, Yeotmal 33.7

    3 Pawara Dhule, Jalgaon 25.18

    4 Madia,

    Gond

    Gadchiroli, Yeotmal 20.8

    5 Bhil Nandurbar 20.6

    6 Halbi Gadchiroli 13.93

    7 Malhar Koli Thane 13.88

    8 Rajgond Gadchiroli 10.88

    9 Korku Amravati 9.49

    10 Tandvi Jalgaon 8.33

    1. Solubility test

    2. Electrophoresis at alkaline pH using cellulose acetate membrane as supporting medium.

    During the last ten years, we conducted population genetic surveys in different tribal areas of Maharashtra

    using these rapid cost-effective laboratory techniques. The prevalence of sickle cell disorder (carrier state) is

    shown in table 2.

    Population genetic survey data from our Dept. indicates that the prevalence of sickle cell disorder in the

    overall population of Maharashtra is less than 0.1% while it is very high amongst the tribal population

    groups from Nandurbar and Gadchiroli districts of the State. The same tribal population groups residing in

    the neighboring states of Gujarat, Madhya Pradesh and Andhra Pradesh have a similar prevalence. Our

    epidemiological data suggests:

    1. Prevalence of sickle cell disorder is very high among tribal population groups Bhil and Pawara from

    Nandurbar Dist. and amongst the Madia, Pardhan and Oktar population from Gadchiroli Dist. I.e. 20

    - 20%.

    2. The highest recorded prevalence is among the Oktar group i.e. 35%.

    3. The sickle cell gene is practically absent among the Mahadeo Koli, Thakar and other tribal groups

    from Western Maharashtra.

    4. The overall prevalence among tribal populations is about 10% for the carrier state and 0.5% for

    sufferers.

    Sickle Cell Anemia

    All the clinical complications recorded in

    the literature are found among patients

    from tribal population groups. The

    clinical, molecular and genetic aspects of

    sickle cell disease have been reviewed

    (7). Although some generalization aboutthe genotype-phenotype correlation may

    be made, sickle cell patients sharing

    identical genotypes exhibit considerable

    heterogeneity in clinical symptoms. Some

    of the common symptoms seen in patients

    suffering from sickle cell anaemia

    include:

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    11 Kolam Yeotmal 8.33

    12 Warli Thane 8.04

    13 Katkari Pune, Raigad, Ratnagiri 5.90

    14 Kokana Dhule, Nasik 3.50

    15 Andha Nanded 1.97

    16 Mahadeo

    Koli

    Pune, Nasik 0.81

    17 Thakur Pune, Thane, Raigad,

    Ahmednagar

    0.00

    * Anaemia

    * Intermittent Jaundice

    * Severe joint pains

    * Recurrent infections

    These symptoms usually appear betweenthe ages of four and five and severity

    increases with age. Most of the patients

    do not require blood transfusion. Careful

    history, presence of the above mentioned

    symptoms and caste constitute basis for diagnosis of sickle cell anemia.

    Treatment

    No genetic disease could be simpler than sickle cell anaemia. It is a simple disease but there is no cure. In

    the absence of any cure, majority of the sickle cell patients have a miserable and short life span. Instances ofsudden death have also been reported in such cases. The available treatment strategies can be broadly

    divided into five categories: anti-sickling agents, vasoactive drugs, enhancing fetal hemoglobin production,

    bone marrow transplantation and gene therapy. Unfortunately neither the diagnostic nor the above

    mentioned treatment facilities are available in tribal areas and all these are beyond their reach. Although the

    tribal health problem is grave, the Health Department is unable to provide them with any health care for

    several reasons. Teachers and medical students who have sufficient knowledge about the subject are most

    unwilling to work in tribal areas. Ultimately, the patients approach traditional healers known as "Bhagat" in

    whom they have complete faith and confidence. Since there is no specific treatment available for the

    disease, the only alternative is prevention. Therefore, we can undertake such preventative measures like

    health education and genetic counseling. Studies carried out in Cyprus, Greece and the UK for similar

    types of diseases using such preventative strategies have shown promising results (5). A preliminary report

    on the prevention of sickle cell disorder in India is cited (3,8).

    Sickle Cell Disorder and the State of Maharashtra

    Studies carried out by our centre and other scientists from different institutions indicate that the overall

    prevalence of sickle cell disorder in different tribal populations is 10% for carrier state and 0.5% for the

    sufferer. The total tribal population from the State of Maharashtra as per the recent Govt. record is 90 lakhs

    at the end of the 20th

    century [Note: lakh equals 100,000. -KRB]. Based on this number, the expectedcarriers of sickle cell would be 9 lakhs and expected number of sickle cell homozygotes would be 45,000.

    The prevalence is very high among the Bhil and Pawara tribal groups from the Nandurbar District and the

    Madia, Pardhan, Otkar and Gond from the Gadchiroli District. It is estimated that there are more than

    10,000 sickle cell patients in the Nandurbar District itself. The Gadchiroli District is expected to have more

    than 5,000. Taking into consideration the problem of sickle cell disorder, the Indian Council of Medical

    Research (ICMR) launched a preventative program on a trial basis among high risk tribal populations in the

    State of Maharashtra. We established two community control programme centres, one in the Nandurbar

    District and the other in the Gadchiroli District. The major activities of the Centres are:

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    Table 3: Sickle cell disorder from Nandurbar and Gadchiroli

    Centres

    District

    Taluka

    Nandurbar

    Dhadgaon

    Gadchiroli

    Aheri

    Total villages selected 8 6

    Total populationscreened

    4116 2912 (includingSC/ST)

    Total carriers detected 824 525

    Total sufferers

    detected

    44 37

    Prevalence of sickle

    cell disorder

    21% 20%

    Total population of

    the district

    1,00,000 only ST 47,000 SC/ST

    Expected carriers 2,10,000 94,000

    Expected sufferers >10,000 >5,000

    i. Provide diagnostic facitlities for sickle cell disorder and other genetic defects.

    ii. Follow up of sickle cell anemia patients.

    iii. Carry out population genetic survey programs to detect carriers and sufferers.

    iv. Health education.

    v. Genetic counselling.

    vi. Marriage counselling.

    vii. Provide prenatal diagnosis whenever required.

    A summary of the work is shown in Table 3.

    Even though prevalence is very high

    in the district, parents, patients and

    private medical practitioners have

    very limited information about the

    disease. We had detailed discussionswith the parents of sickle

    homozygous children. About 50% o

    the parents showed keen interest in

    the subject. When provided with this

    information, they were surprised to

    know that they could have avoided

    such sufferings of their children.

    With this background, we organized

    several discussions, meetings and

    arranged demonstrations in villages

    on sickle cell disease.

    Our survey showed that in every

    village there are at least one or two patients suffering from sickle cell disease. People of the village were

    aware of the suffering of these patients and had a deep sense of sympathy and compassion for them. We

    explained to them about the hereditary nature of sickle cell disease and that no curative treatment is

    available although it can be prevented. This had a good impact on the general population and was the majo

    beginning for creating community awareness for the counselling programme.

    We distributed identity cards giving the sickle cell status to every individual and explained the concept of

    marriage counselling to prevent the disease. They also readily accepted the concept of family planning to

    prevent the birth of further affected children. Some such parents have now become counsellors for sickle

    cell anemia in their villages.

    We had also organized several lectures for school and college students living in the high risk areas,

    explaining to them the principles of genetics, mode of inheritance, high prevalence of sickle cell disease in

    tribal areas, giving them detailed information on sickle cell disease including control and treatment. The

    students were tested for their sickle cell status and we gave them counselling cards explaining to them that

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    marriage counselling is the only solution for the disease. All male students collected the cards but about

    20% of the female students did not turn up even to collect the cards, in fear that in case they were carriers o

    sufferers of sickle cell, it may become known to others. This was despite our promise to keep their sickle

    cell status confidential.

    Simultaneously, we organized lectures on sickle cell disorder for the local Govt. and private medical

    practitioners, including paramedical workers, explaining to them about the prevalence, diagnostic methods,

    possible treatment, complications and prevention aspects of the disease. Although we carried out these

    activities for a limited period, our experience suggests that we have definitely created awareness among

    people about sickle cell disorders in the areas where we have established community control programmes.

    However, it is necessary to continue with such activities and with our experience we are hopeful that with

    devotion from medical scientists from multi-disciplinary fields, people will accept marriage-counselling

    programmes.

    References

    1. Balgir RS., Sharma PK: Distribution of sickle cell hemoglobin in India. Ind. J. Hematol 6:1 (1988).

    2. Bhatia HM., Rao VR: In Genetic Atlas of Indian Tribes. ICMR Publication, Mumbai (1988).

    3. Gangakhedkar RR: Health education in sickle cell disease. Immunohaematology Bulletin (ICMR):

    20(6) 1 (1989).

    4. Kate SL., Phadke MA et al: Impact of genetic disorders on health problems among tribal population

    groups of Maharashtra. In: An Overview of Tribal Research Studies. Tribal Research Institute 11:99

    (1995).

    5. Michael A., Sophia K., Minag H : How Thalassemia was controlled in Cyprus. World Health

    Forum, 7:291 (1986).

    6. Model BC., Petrou M The problem of hemoglobinopathies in India. Ind. J. Hematol. 1:5 (1983).

    7. Mohanty D: Sickle Cell Anemia - The Indian Scenario. Ind. J. Hematol. 16,1:1 (1998).8. Pande PL., Chaudhuri NK., Jain DC: Awareness regarding hemoglobinopathies among Gonds of

    Jabalpur. In: Tribal Health Bulletin 5(2):36 (1999).

    9. Rao VR: Genetics and epidemiology of sickle cell anemia in India. Immunohaemtology Bulletin

    11(1):39(1988).

    10. Rao VR., Gorakshakar AC: Sickle cell hemoglobin, beta-thalassemia and G6PD deficiency in tribes

    in Maharashtra. Gene geography 4:131 (1990).

    http://www.med.harvard.edu/http://www.mgh.harvard.edu/http://www.bwh.partners.org/http://sickle.bwh.harvard.edu/index.html