Indian Express: New Delhi: Monday, August 28, 2017.
When Rights
of Persons with Disabilities Act 2016 came into being in April this year, it
gave a lot of hope to haemophilia patients, as the disease was included in the
list of disabilities. The law entitled the disabled to benefits in several
government schemes, scholarship, pension, and reservation in jobs. But sadly,
all this remains only on paper. The erstwhile Right of Persons with
Disabilities Act 1995 considered only seven categories, namely blindness, low
vision, locomotive disability, hearing impairment, mental retardation, mental
illness and leprosy, but not haemophilia.According to a study conducted by the
World Federation of Haemophilia in 2016, almost half of the world’s haemophilia
population lives in India.
Haemophilia
patients in the country have not been able to avail any of benefits offered
under the new law as the government has not framed guidelines pertaining to
them. The sufferers have been unsuccessful in procuring disability certificates
from hospitals because there is no clarity on the percentage of disability that
has to be associated with persons suffering from different levels of
haemophilia.
The Ministry
of Social Justice and Empowerment, in its reply dated July 26 to an RTI query
filed by Delhi-based lawyer Sagar Sharma, said, “Guidelines for the assessment
and certification of specified disabilities included in the RPwD Act 2016,
including haemophilia, are being framed by this department. Once these are
finalised, it will be notified by the gazette of India.”Commenting on this,
Sharma said, “The RTI reply shows that the RPwD Act 2016, in its present form,
is of no use to haemophilia patients. The government should frame guidelines at
the earliest, otherwise haemophilia patients cannot avail any benefits meant
for the disabled.
What is
Haemophilia?
Haemophilia
is a genetic and life-threatening bleeding disorder that affects the blood’s
ability to clot due to the absence of clotting proteins called factors. It is
classified into three kinds—mild, moderate and severe. People with mild
haemophilia may not have any symptoms for many years until an event such as a
surgery or a dental procedure occurs. However, in cases of moderate haemophilia,
symptoms will be noticeable early on. Symptoms of severe haemophilia are
similar to those found in moderate haemophilia. However, joint bleeding is more
frequent and severe.
Dereliction
in UP
Uttar
Pradesh, which was recently in news for its poor healthcare system, especially
with regard to treatment of encephalitis, lags behind even in the treatment of
haemophilia. According to an RTI reply, in the country’s most populous state,
there are only 23 government hospitals that provide the facility of free
“clotting factor concentrates”, which helps in stopping the bleeding and is the
first step in treatment of patients with severe haemophilia
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