Barriers remain for people with rare diseases who apply for a disability certificate

When Mallela Venkateswara Rao, a laboratory technician from Vijayawada, headed to Sachivalayam in his area in June, he hoped that his son Mallela Gunasekhar, 15, who was diagnosed with Becker Muscular Dystrophy (BMD) in 2018, would finally be entitled to the pension he is due.

But his hopes were dashed again when he discovered that his now bedridden son had a disability percentage of 75%. BMD is a rare genetic disorder and a progressive disease that causes muscle weakness. Over time, people living with this disease lose the ability to walk and become bedridden.

Under NTR Pension Bharosa, the AP government pays a pension of ₹ 6,000 to ₹ 15,000 to people with more than 40% disability. Fully disabled are eligible for ₹10,000 or more in AP. However, people with many rare diseases have pointed out that despite being bedridden, many will not receive this amount.

In 2021, when Gunasekhar’s family applied for a “Disability Certificate”, he was assessed and given a disability percentage of 75%. Based on percentage, Gunasekhar gets ₹6,000 every month.

Now, five years after Gunasekhar became bedridden, he continues to get the same amount decided based on his condition in 2021. Mr. Venkateswara filed a return form in December 2025 to update the percentage allotted to his son. In June, when he received his certificate, he found out that his son had a disability percentage of 75% again.

“The government should understand that every time there is a delay, we are losing the money we rightfully owe my son,” says Mr. Venkateswara, who is also the coordinator of the Amaravati Rare Diseases Organisation.

Similar is the story of E. Varalakshmi of Kalugotla village in Yemmiganur mandal of Kurnool district, an agricultural laborer and illiterate, who has been running from pillar to post for the past four years to get a disability certificate for her 28-year-old daughter Ediga Usenamma, who was diagnosed with Juvenile Huntington’s Disease in 2018.

Varalakshmi, lost her husband and son to the same rare disease which is hereditary, progressive and neurodegenerative causing severe involuntary movements, motor dysfunction, cognitive and behavioral symptoms.

Varalakshmi, was told that her applications for her daughter could not go through due to “payment failure”. Finally, this year the staff of Sachivalaym in Yemmiganur successfully booked a slot for her daughter’s assessment through the Access, Rehabilitation and Empowerment (SADAREM) Disability Assessment Software.

Her daughter was assessed on May 12, but Varalakshmi continues to wait for word on the certificate. Apart from the ₹4,000 widow’s pension she receives, Varalakshmi has no financial support. The delay only increases her anxiety by the day, especially after her daughter fell last week.

“My son and husband died after sustaining head injuries in a fall,” recalls Varalakshmi, who now fears the worst for her daughter.

Lack of awareness among disability certifiers about rare diseases is one of the reasons for these difficulties, explains Prasanna Shirol, co-founder of the Rare Disease Organization. The Rights of Persons with Disabilities (RPWD) Act, 2016 recognizes 21 disabilities in the country, including blindness, mobility impairment, hearing impairment and others.

“When a patient with a rare disease, such as Huntington’s disease, goes for a medical assessment, the certifying staff are not aware that it is a progressive disease. Because the name is not on the list of 21 disabilities, they cannot properly assess the patient’s disability,” he explains.

Recently, the AP government has started focusing on the problems faced by people with rare diseases. When asked about the measures being taken, Director of Medical Education A. Vishnu Vardhan said the government would launch the Sanjeevani initiative across the state to address the problems faced by people living with rare diseases. The government is also looking at the Kerala model to address the issues. He said he would look into Varalakshmi’s case.

Published – 02 Jul 2026 18:48 IST