With nearly half of the world’s haemophilia population found in India,
there was much hope that the Rights of Persons with Disabilities Act
2016 would look into their needs. While the Act includes haemophilia
in the list of disabilities, and entitles patients to many government
schemes, scholarships, pension, and reservation in jobs, but some of these
especially jobs remains on paper.
These were some of the issues highlighted at a Founder’s
Day program of the Haemophilia Federation of
India(HFI) that was held over the weekend in New Delhi. The meeting
saw policymakers as well senior government representatives present on the
occasion.
The Act has enabled haemophilia patients to get better facilities for
treatment, has helped with school/college admissions as well as the
workplace to understand the seriousness of the issue. It has definitely
increased awareness of the seriousness of the issue. Knowledge among
doctors has also increased tremendously and most states are providing free
treatment to patients thanks to the pro-active role of the National Health
Mission in providing funds to all the states asking for it. –
Vikash C Goyal, President, Haemophilia Federation of India
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. It is this nature of
haemophilia that experts say calls for it be placed in the list of benchmark
disorders.
“There is no reservation in the Act for job quotas or education like the
benchmark disabilities,” points out Mukesh Garodia,
Vice President, HFI, a hemophilia patient.
“This is a disorder where the condition of patient can vary drastically. So
you can be perfectly healthy one day and wake up with a serious issue. Given
this nature, people often face issues getting hired or with job security.
Often hemophilia is accompanied with orthopedic problems, which makes it even
harder to get hired. The Act has no clarity about where we stand. “
With many states yet to even notify the Act, there are problems accessing
even the benefits specified. Many patients have complained of being unable to
get disability certificates because there is no clarity on the percentage of
disability that has to be associated with persons suffering from different
levels of haemophilia.
Source: https://newzhook.com/story/20636
