health problems of tribal population groups from the state of maharashtra
TRANSCRIPT
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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