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A father’s fifteen-year fight for a drug for his daughter

A young girl with Silver-Russell syndrome. Image credit: Alaska Jack [CC BY-SA 3.0 (https://creativecommons.org/licenses/by-sa/3.0)]
After fifteen years, a father has won a legal battle over medical expenses he paid to treat his daughter’s genetic condition.

The Gujarat High Court has ruled in favour of Harshadkumar Pandya, an assistant teacher in Rajpipla, whose daughter was born with Silver-Russell syndrome, a form of dwarfism.

Fifteen years back, on the advice of government doctors, Pandya had sought treatment for his daughter with the growth hormone therapy Norditropin. Injections with Norditropin replenish the growth hormone that the body isn’t making, in this case due to Silver-Russell syndrome.

Yet when Pandya tried to get the Rs 153,462 he paid for the treatment reimbursed, he was turned down as the state government argued the therapy was cosmetic in nature. The government also asserted that the imported drug was not lifesaving and treatment undertaken for physical enhancement.

Pandya took the state government to court in 2004; the ruling, fifteen years later, says treatment for a genetic condition like Silver-Russell syndrome is not cosmetic in nature and so should not be exempted from reimbursements. In its ruling, the HC noted that the treatment was recommended by government doctors and was intended to avert potential complications from the girl’s dwarfism, not for cosmetic purposes.

The HC ordered the state government to reimburse Pandya the full cost of the treatment, with nine percent interest, within a six-week timeframe.

The ruling sets an important precedent. Genetic disorders affect significant numbers of Indians, with a 2011 paper estimating that half a million Indians are born with physical malformations and 21,000 with Down’s syndrome each year. Other common genetic disorders in India include thalassemia, responsible for 100,000 deaths before the age of twenty, and a number of rare genetic diseases which – despite the uncommonness the term suggests – cumulatively affect around one in twenty Indians.

With the HC ruling that treatment for genetic conditions does not constitute cosmetic treatment, it may encourage families of those suffering from such conditions to seek adequate compensation and pursue treatments they may not have been able to afford otherwise.

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