Andhra Pradesh - Eluru   

Despair over high treatment cost of rare disease

Battling for life: Ronald Jesse Abel with his mother Nirmala in Eluru.

ELURU: For four-year-old Ronald Jesse Abel, born with a defect in his white blood cells, the pendulum may swing either way – to life or death - any moment. But, for him, battling for life is literally child’s play. Visits to hospitals, undergoing medical tests and administration of drugs have become part of his routine.

Ronald loves to play with children of his age. Yet, he leads a solitary life, fearing a battery of viral, tubercular and fungal infections, thanks to his fragile immune system. His mother, Nirmala, is his lone companion in his small world.

According to Nirmala, who belongs to Machilipatnam and was here on a visit, the problem surfaced when Ronald was six months old when his body turned blue. He was referred to a corporate hospital in Chennai for a lung biopsy which revealed that the boy was suffering from immune deficiency. “He showed all the symptoms associated with HIV, but was not an HIV patient”, she added.

Dr. Revathi Raj, Consultant, Paediatric Haematology at Apollo Speciality Hospital in Chennai, who is treating the boy, said, “Ronald was born with a defect in the lymphocytes—one of the two white blood cells—which is called Hyper IGM Syndrome. It is observed in children born to the couples married within the blood relations.”

She said the problem could be tackled by administering proteins from blood donors called intravenous immunoglobulins, through intravenous drip every three weeks throughout the patient’s life. Stem cell transplantation is said to be only solution but is very expensive. Ronald does not have siblings to donate stem cells. Even if he had, sibling transplant costs about Rs. 10 lakh while unrelated transplants cost over Rs. 30 lakh - quite beyond the capacity of Ronald’s parents.

“There is a world wide shortage of blood plasma donors of late. And, the price of IVIG has shot up from Rs. 1,000 to Rs. 5,000 a gram. The exorbitant price forces the kin of patients of Hyper IGM syndrome to stop the IVIG bringing to the fore the issue of euthanasia as debated recently in the case of muscular dystrophy patients”, Dr. Revathi said.

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Despair over high treatment cost of rare disease

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