In Andhra Pradesh,families dealing with rare diseases hit major roadblocks getting disability certifications. These are key for financial aid. Mallela Venkateswara Rao from Vijayawada knows this struggle all too well. His son,Mallela Gunasekhar, diagnosed with Becker Muscular Dystrophy (BMD),faces a tough situation . Despite his worsening condition,he still gets ₹6,000 monthly pension, based on a 75% disability rating from 2021 .
A.P. government offers pensions from ₹6,000 to ₹15,000 for disabilities over 40%. Yet many families say even bedridden members can't secure enough support . Venkateswara,who leads Amaravati Rare Diseases Organisation,voices his frustration: “The government should understand that every time there is a delay, we are losing out on money that is rightfully owed to my son.”
In Kalugotla village,E. Varalakshmi has fought four years for a disability certificate for her daughter,Ediga Usenamma, with Juvenile Huntington’s disease . This hereditary illness causes severe motor and cognitive issues. Varalakshmi, a farm worker,lost husband and son to same disease,intensifying her fears for her daughter’s future.
After many hurdles, Varalakshmi finally got an assessment appointment on and Empowerment (SADAREM) in May. But she's still waiting for the certification. With only a widow pension of ₹4,000, her finances are shaky. Her daughter’s recent fall only worsens her worries.
Prasanna Shirol,co-founder of Organisation for Rare Diseases,highlights a key problem: certifying staff often lack awareness about rare diseases . Rights of Persons with Disabilities (RPWD) Act,2016, recognizes just 21 disabilities,leaving many rare conditions in the dark. This oversight means patients like Ediga Usenamma face poor evaluations.
“When a patient of a rare disease,for example,Huntington’s Disease,goes for medical assessment, the certifying staff is not aware that it is a progressive disease,” Shirol explains . “Since the name does not feature in the list of 21 disabilities, they cannot assess the patient’s disability properly.”
A.P. government now starting to address needs of those with rare diseases . Director of Medical Education A . Vishnu Vardhan announced Sanjeevani initiative statewide,inspired by Kerala models. He acknowledged families' struggles, like Varalakshmi's, and promised to look into her case.
Ongoing battles of families like Venkateswara's and Varalakshmi's underscore urgent need for systemic changes in disability certification. As they navigate this complex,often unresponsive system, timely support remains a distant hope…
