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As printed in Hearing Health, volume 20:2,
Summer 2004
by Rajendra G. Desai, M.D., Ph.D.
India is home to one out of every six people in the
world. With 1.1 billion inhabitants, the country has
many critical health issues. Overcrowding, especially
in urban areas, is high on the list as are the AIDS
pandemic and high incidences of tuberculosis and hepatitis
B. In the face of the misery and mortality caused by
these conditions and diseases, it is difficult to raise
awareness on another grave reality – an alarmingly
high prevalence of deafness.
Primary causes for this silent epidemic, many of which
have simple solutions, were identified by a 2001 study
supported by a coalition of American and Indian organizations.
Unfortunately, finding the resources to implement the
solutions is a major problem.
In the study, Project Deaf India (PDI) collaborated
with the Rotary Clubs of Newport-Balboa in Newport Beach,
Calif., and Midtown Hubli in southern India, All India
Institute of Delhi and the U.S. National Institutes
of Health in researching causes of deafness in Basavankoppa
and Sullali, two villages where it affects many inhabitants.
The study revealed four contributing factors: lack of
rubella vaccination, water pollution, marriage among
blood relatives and chronic ear infection in children
due to the religious custom of putting a concoction
in the ears of infants of coconut oil mixed with the
juice of leaves from a holy tree.
With Rotary Club support, PDI remains involved with
the residents of what have come to be called the Silent
Villages. The organization has provided three subterranean
wells with a reservoir that assures a 24-hour supply
of fresh water, an elementary school and a health clinic.
The clinic staff provides hearing aids and batteries,
addresses other health problems and educates the villagers
on the perils of the coconut oil ritual and marrying
relatives.
Though PDI’s impact on these communities has
been significant, India is a country of more than 700,000
villages, home to almost 90 percent of India’s
population. Whereas most villages do not have the same
extreme incidence, deafness is prevalent throughout
the nation though the exact rate in rural areas is unknown.
Deafness may easily be the most common birth defect
in India and is primarily due to fetal exposure to rubella.
Commonly called measles, the viral disease also causes
blindness, heart disease and other birth defects.
The U.S. had its own devastating bout with rubella
in the early 1960s when over 60,000 children were born
deaf. However, the development of a vaccine and its
thorough national distribution has rendered rubella-induced
deafness nearly nonexistent in America.
Immunizing against rubella is rare in India, a tragically
ironic situation since it is the home of the Serum Institute
of Pune, producer of half of the world’s rubella
vaccine.
Informal consultations with infectious disease experts
in India and the U.S. suggest that administering the
vaccine to preadolescent girls could drastically reduce
the incidence of rubella and related birth defects.
Currently, PDI is working with the Serum Institute on
a pilot project to vaccinate 10,000 preteen girls in
Pune. The total estimated cost for immunizing this group
is about $25,000; to take the program nationwide would
require an estimated $30 million investment.
Vaccinating girls today will reduce congenital deafness
in the next generation, hopefully significantly, but
there are critical needs among Indians of all ages who
are currently living with deafness. To address a pressing
one, PDI has adopted the goal of implementing an early
hearing loss detection program. The first step is the
recent purchase of a van, customized to serve as a sound-proof
examination space. This mobile testing unit now visits
villages to provide hearing screening for children.
Although a major achievement, one van is no replacement
for a nationwide system. Since none exists, many children
are not diagnosed until long after they should have
acquired language.
Most deaf children in India grow up unable to communicate
effectively and despite their range of intellectual
abilities, they are often relegated to a life of dependency.
With early intervention and vocational training, these
individuals could reach their full potential as do many
deaf children in countries where newborn screening and
intervention services are widely available.
Yet one more goal PDI is embracing is to establish
a training program for deaf students. India is home
to more than 1,000 technical schools that send graduates
all over the world to meet the growing demand for high-tech
labor. These schools are already equipped with most
of the technology that deaf students would need to be
successful. If each of these schools would provide scholarship
support for 20 deaf students, pairing them with a student
mentor, a generation of what is now lost potential could
be making a significant contribution to India and the
world within a few years.
The Indian government must be urged to adopt as national
policy early detection and intervention for hearing
loss and immunizing against rubella. But the problem
is not India’s alone. What affects one-sixth of
the world’s population will inevitably influence
the rest of the world. Developed countries must invest
resources in the simple solutions that will defuse the
critical problem of deafness in India.
Dr. Rajendra Desai, a retired oncologist,
is the founder of Project Deaf India. His interest in
hearing healthcare began in 1964 when his youngest daughter
Anjali was born deaf due to rubella. Desai joined other
parents to start a school using the Total Communication
System. Anjali Desai Margolin earned a master’s
degree from Gallaudet University in Washington, D.C.,
where she now works as a career counselor.
When the doctor learned of India’s Silent Villages,
he dedicated himself to helping India’s children
reach their full potential just as Anjali has. They
recently teamed up to make presentations at the National
Conference for Early Hearing Detection and Intervention
in D.C. and the International Conference on Newborn
Hearing Screening in Italy. Readers may contact the
author at RGDesai@aol.com.
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Hearing Help Needed—Aids-Related
Hearing Disorders Overwhelm South Africa
Breaking the Silence in Cambodia
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