The thalassemia community was relieved when the blood disorder was recognised as a disability in 2016, but the recent gazette notification that has given guidelines for certification has left them very worried.
The guidelines say disability certificate can be given only on the basis of associated conditions in the patients, such as the number of blood transfusions, signs of bone marrow hyperplasia, and osteoporosis. They say it’s incorrect to use percentage benchmark for blood disorders like thalassemia. A thalassemia major person who is dependent on blood transfusions for life is 100% disabled as it is a progressing, genetic disorder. This is unlike a visually disabled person, who can be certified as 50% visual disabled if one eye has an issue. The Rights of People with Disabilities (RPD) Bill was passed by Parliament on December 14, 2016. The Bill, that views disability as a dynamic and evolving concept, increased the number of disabilities from 7 to 21, including thalassemia.
After a year, the Ministry of Social Justice and Empowerment issued guidelines for certification through a gazette notification on January 5. Now, the community is upset as thalassemia has been considered along the same lines as motor disability or visual or hearing impairment, where percentage comes in. Seeking a modification, they are planning to challenge the government.
Shobha Tuli, president of the Federation of Indian Thalassemics, said it will soon write to the Ministries of Social Justice and Disabilities asking for modification of the guidelines. “It is unfortunate that none on behalf of the thalassemia societies in India was consulted before the guidelines were framed,” she said.
Unpredictable
Stating that the rules are unacceptable, Namitha A. Kumar, who is living with thalassemia, asked how could the course of a progressive blood disorder be predicted? “I may need one transfusion per month so I am 40% disabled as per guidelines. But next month, if I get an infection, then I need four units of blood. Should I change my disability status every month?” she asked. “Every thalassemia major should be considered 100% disabled because this is a progressive condition with no cure for adults.” Anubha Taneja Mukherjee, Attorney and Member Secretary of Thalassemia Patients Advocacy Group said while it is good that the government has for the first time taken up such an initiative, the level of disability based on associated conditions should have a re-look. “Conditions vary from patient to patient and one thalassemic may find him/herself falling in more than one level,” she said.
Legal expert Jayna Kothari said the guidelines are highly problematic. “The guidelines show that they have not consulted groups of persons with thalassemia. The manner in which the guidelines are given, to get any benefits under the RPD Act, one would have to possibly have organ failures, bone marrow transplants and many other complications,” she said.
“There should be a better manner for assessment which would enable persons with thalassemia to get benefits early on,” she added.
