Rare Disease Patients in Andhra Pradesh Face Repeated Hurdles in Disability Certification

In June, when Mallela Venkateswara Rao, a lab technician in Vijayawada, visited the local Sachivalayam, he hoped his 15-year-old son Gunasekhar, diagnosed with Becker Muscular Dystrophy (BMD) in 2018, would finally receive a revised disability certificate. Instead, he found that his now bedridden son had been assessed once again at 75% disability—the same percentage given in 2021.

BMD is a rare genetic disorder that progressively weakens muscles. Over time, patients lose the ability to walk and become bed-bound. Under Andhra Pradesh's NTR Pension Bharosa scheme, individuals with over 40% disability receive monthly pensions ranging from ₹6,000 to ₹15,000, with fully disabled persons eligible for ₹10,000 or more. But despite being bedridden, many with rare diseases do not receive the higher amount.

Mr. Venkateswara, also coordinator of the Amaravati Rare Diseases Organisation, submitted a request in December 2025 to update his son's disability percentage. The June reassessment, however, again gave 75%. “The government should understand that every delay means we lose money rightfully owed to my son,” he said.

E. Varalakshmi, a farm labourer and widow from Kalugotla village in Kurnool district, has faced similar struggles. Her 28-year-old daughter Usenamma was diagnosed with Juvenile Huntington’s disease in 2018. Varalakshmi lost her husband and son to the same hereditary, progressive neurodegenerative disorder. For four years, she tried to obtain a disability certificate, facing “payment failure” errors online. This year, Sachivalayam staff finally booked her daughter for assessment via the Software for Assessment of Disabled for Access, Rehabilitation and Empowerment (SADAREM). The assessment occurred on May 12, but Varalakshmi still awaits the certificate.

Apart from a widow pension of ₹4,000, she has no financial support. The delay is increasing her anxiety, especially after her daughter suffered a fall last week. “My son and husband passed away after head injuries from falls,” Varalakshmi recalled, fearing for her daughter.

Prasanna Shirol, co-founder of the Organisation for Rare Diseases, noted that lack of awareness among disability certifying staff is a key issue. The Rights of Persons with Disabilities (RPWD) Act, 2016 recognises 21 disabilities, but rare diseases like Huntington's are not explicitly listed. “The certifying staff is not aware that it is a progressive disease, so they cannot assess disability properly,” he explained.

Recently, the Andhra Pradesh government began focusing on problems faced by rare disease patients. Director of Medical Education A. Vishnu Vardhan stated that measures are being taken to address these challenges, though specifics were not provided.