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Maharashtra: Thalassemia patients now in state disability list

On September 14, the Maharashtra state government passed a general resolution to include sickle cell disease, thalassemia, hemophilia in the disability category.

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Activists feel that creating awareness about the issue is the need for the hour
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After a wait of two long years, the Maharashtra government has finally passed a general resolution (GR) bringing blood deficient patients under disability category. As such patients of thalassemia, hemophilia and sickle cells disease who are included in this category will now be able to get reservations for jobs and education. The patients association, however, say that rather than wasting time by rejoicing, they should fight for what has been promised to them.

On September 14, the Maharashtra state government passed a general resolution to include sickle cell disease, thalassemia, hemophilia in the disability category. They are included in the list of 21 disabilities covered under the Rights of Persons with Disabilities Act, 2016. Though the central government had passed the Act in 2016, various state governments had failed to include thalassemia and hemophilia in the disability category.

The issue was raised by Kalyan MP Shrikant Shinde in Lok Sabha during Zero Hour in monsoon session this year. "Even after two years of the Rights of Persons with Disabilities Act coming into existence, the government did not give disability certificate to the patients of blood disorder," said Shinde.

The news has put a smile on the face of the activists who had been fighting for the cause. "We have been fighting for this for the past 10-12 years. Though the bill was passed in 2016, it is now that the state government has passed the GR," says Vinay Shetty, vice-president of Think Foundation, an NGO which works for patients with blood deficiency. He points out that this is just the beginning and there will be lots of problems in the application of the aforesaid GR.

"For instance, though the UPSC form mentions that the Rights of Persons with Disabilities Act, 2016 is in place, the application form does not mention thalassemia, sickle cells disease and hemophilia in the disability category," he says. "There is always a gap between policy-making and execution. It is now time for us to fight and ensure that what they have promised through the GR is delivered," he adds.

Shetty feels that creating awareness about this issue is the need for the hour since many people are not aware of this inclusion. "Today I was at a government hospital; even they are not aware of the inclusion of patients with blood deficiency in the disabled category. This news should reach out to maximum people so that they can benefit from it, and in case they are denied, they can always come to us so that we can fight for their rights," he adds. "Other states should also follow the suit and implement this policy decision," he concludes.

NOBLE Cause

  • On September 14, the Maharashtra government passed a GR to include sickle cell disease, thalassaemia, haemophilia in the disability category
  • In the RPWD Act, 2016, the list of conditions of disabilities was expanded, and included blood disorders such as haemophilia
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