National meet underlines issues faced by haemophilia patients in accessing rights under RPWD Act 2016
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.