Rare Diseases, High Medical Expenses Cause Families Distress

Patients and care-givers are asking the government to step in and provide financial and medical help.

Published: 02nd March 2016 04:22 AM  |   Last Updated: 02nd March 2016 11:23 AM   |  A+A-


BENGALURU: Patients with rare health disorders and their families are seeking the government’s help to meet their high medical expenses.

The disorders include haemophilia, thalassemia, sickle cell disease, Duchenne muscular dystrophy (DMD), pompe, Asperger syndrome and primary immunodeficiency disease (PID).

Shanthi Ganesh has a 24-year-old son, Neelesh Ganesh, with Asperger’s syndrome. This is a pervasive developmental disorder (PDD), which causes delays in the development of many basic skills, most notably the ability to socialise, communicate, and use the imagination.

“Even an upper middle class family cannot afford the treatment expenses,” she said, urging the government to step in and help. Talented in painting, Neelesh has studied up to the 12th standard.

Dr Namitha Kumar, Research Director, Centre for Health Ecologies and Technology, says the exact cause of Asperger’s syndrome is not known. It may be inherited, and if diagnosed, can be managed well, she told City Express.

Similarly, haemophilia patients face difficult odds. It is a blood disorder that results in constant pain in the body and joints.

Premroop Alva, secretary of the Haemophilia Society, said, “It is treated with clotting factors, which are costly. If the government comes up with a care centre, poor patients will not be so badly burdened.”

Patients with such a disorder are vulnerable to internal injury, which calls for quick medication to save them from becoming disabled, he said. A patient spends Rs 2.5 to 3 lakh a year to treat the condition.

The human body has 13 clotting factors, and the absence of Factor 8 and 9 results in haemophilia. If a patient suffers a cut or internal injury, he bleeds without control. The condition is treated by infusing a clotting factor (drug), which remains active for a short time.

Doctors say it has no cure but can be controlled. About 70 per cent cases of haemophilia are genetic and 30 are caused by mutation. And one in every 5,000 men is detected with this condition.

Social Stigma

Gagandeep, a patient with thalassemia, has faced rejection from many employers. “Due to low awareness, people with the condition don’t also get brides and grooms,” he said.

Ayesha (24), who also suffers from thalassemia, needs about `8,000 for medicines every month. “When she was six months old, we noticed patches on her body. She was later diagnosed as a thalassemia patient,” Mohammed Aslam, her father, said.

In India about 30 million are affected by thalassemia, according to a 2010 report. This is the largest rare disease population to be recorded.

Doctors say patients who require blood transfusion regularly are also at risk of contracting hepatitis and AIDS.

Art and Film Festival

Globally, 7,000 rare diseases are listed, and nearly 70 million people in India suffer from such diseases. That comes to one in every 20 people. In Karnataka, the estimate as of February 2014 was 3.7 million. The Centre for Health Ecologies and Technology at the International Institute of Art, Culture and Democracy, Bengaluru, had recently organised the Blue Ribbon Art Exhibition and Film Festival under its Autism and Rare Diseases Awareness outreach programme.


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