Merely seven months after blood disorders like hemophilia, sickle cell anaemia and thalassemia were brought under the ambit of the Persons with Disability (PwD) Act 2016, the Union Health Ministry has finalised yardsticks to grade their disability to help them receive certificate that will make them eligible for employment and other benefits under the legislation.
Bleeding disorders are a group of conditions that result when the blood cannot clot properly.
As per the guidelines approved by the Health Ministry recently, if a person with genetic inherited diseases is unable to work or continue study due to his/her medical condition and it is having negative impact on his quality of life then he/she will be eligible for social security disability benefits.
Also, those with the most severe cases such as functional impairments of organs like liver, heart, skeletal system can also avail benefits.
“They can receive disability benefits if they can show that their bleeding disorder is preventing them from performing gainful work or are debarred from appearing in examination thereby jeopardising their career and livelihood,” as per the guidelines.
To check misuse of the benefits, the guidelines have mandated that all the diagnosis are to be supported by tests and investigations and medical certificate from a competent physician such as hematologist recognised by the Government.
The Health Ministry has now forwarded the guidelines to the Social Justice and Empowerment Ministry to take a final call in the matter.
Patients of thalassemia, requires blood transfusion throughout their life because of which excess iron results in their body leading to damage of organs while people with hemophilia bleed and bruise easily, and their blood takes a long time to form clots.
In sickle cell disease, blood cells become crescent in shape instead of the regular oval shape and get stuck to blood vessels causing blockage and reducing oxygen supply to tissues. The disease can cause pain, harm vital organs and lead to anaemia.
Activists in the sector have welcomed the move. They said it will go a long way in lessening burden on the patients as well as their families.
Vikash Goel, president, Hemophilia Federation (India) said that after bringing the sector under the umbrella of the PwD Bill, the Government has been fast enough to set parameters for their inclusion for availing benefits. It is a much-needed relief to the patients as well as their families given the severity of the problems.
“Of around one lakh suspected hemophilic patients, just 20 thousand are registered. Hence, there is a serious need to identify the hidden cases for which a national policy is needed.”
He also noted that cases where the bleeding episodes would be spontaneous and at least six times a year, will also be eligible for benefits.
Shobha Tuli, founder member of Thalassaemics India echoed similar view. “There are over one lakh thalessmia patients in India. Apart from transfusion there are other therapies also for their treatment which are quite costly, resulting in a burden on the family and the patients themselves.
“We had been eagerly looking towards the PwD 2016 Bill so that sector gets extra benefits given huge financial and other constraints that it faces.
“Eighty per cent battle has won now. It is a positive step. We are studying the guidelines for clarity and how it can be implemented,” she said.
The PwD Act which was passed last December has expanded number of disabilities from seven to 21.