Proposal
in 2012 to include haemophilia in Rights of Persons with Disabilities Bill
yet to see light of day, while patients still suffer
Hitesh
(name changed),velopment a 32-year-old businessman, in his urge to attain a
doctorate in Sociology had applied for a scholarship at National Handicapped
Finance and DeCorporation (NHFDC). But his application was rejected for not
meeting the eligibility criteria of 40 per cent disability.
“I
have 30 per cent disability, but in haemophilia, there is no static level of
disability. If I don't get proper treatment my disability may increase. But
sadly, due to my growing age, I might not be eligible for it at that time,“
said Hitesh.
Haemophilia
is a genetic bleeding disorder that mostly happens among men. It impairs the
ability to control blood clotting. In comparison to normal people, they bleed
extensively both internally and externally.With irregular medication and late
diagnosis, it can lead to permanent disability.
According
to Ahmedabad Chapter of Haemophilia Society of India, there are around 5,000
men who suffer from the disorder in the state. And to provide some relief to
their suffering, in 2012 Ministry of Social Justice and Empowerment proposed
to include haemophilia in the category of benchmark disabilities in the
Rights of Persons with Disabilities Bill. The bill is yet to get nod while
patients continue to suffer.
Samina
Khan's 5-year-old boy was discriminated during his school admission because
of his disorder.
Many
private schools refused to admit him claiming they don't have facilities for
students with such disorder. After repeated pleading, they asked Khan to
admit him to a less crowded school. Denied and disheartened, Khan finally
admitted her son to Bright School.
“I
was really harassed during his admission. Don't they have the right to live a
normal life like other children?,“ asks Khan.
Other
than discrimination on the educational front, many with haemophilia are
refused jobs in private companies which forces them to hide their disorder.
“My brother works in a private firm and hasn't revealed his identity in his
company because he is scared of being thrown out. Had there been some quota
or facilities for disabled persons, he wouldn't have feared the
repercussions,“ said Mansuri Shahenaz.
Moreover,
due to the high price for the treatment, most patients can't afford regular
treatment. The monthly expenditure can go up to Rs 32,000 depending on its
severity. And if the patient fails to administer anti haemophilic factor,
which aids in clotting, he becomes more vulnerable to lifetime disability.
Currently,
the government provides more than Rs 7 crore for treatment of these
people.But, the amount is insufficient.“We need at least Rs 50 crore for
everyone's regular treatment.Due to lack of medical facilities, the chances
of permanent disability among patients increases by 100 per cent,“ said Dr
Aswin Patel, a haematologist.
“If
they are included in the disability category, they can procure better
educational and career facilities which will improve their economic
strength.And more number of patients will be able to afford this expensive
treatment,“ he added.
Due
to the disorder, many times their writing speed decreases and they face
problems in examination. “During my class 12 examination, my parents couldn't
get a writer for me as I didn't have the disability certificate. But, in
several cases we also face the same restrictions like a physically disabled person,“
said Niketu Shah.
Moreover,
the bill has set a benchmark disability of 40 per cent or more for
reservation but sadly, disability related to haemophilia occurs in stages, it
can't be measured in percentage.
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