Haemophiliacs in city seek free treatment

The Mumbai chapter of the Haemophilia Society has filed a public interest litigation (PIL) in the Bombay high court, seeking free treatment from the state government. Menaka Rao reports.

The Mumbai chapter of the Haemophilia Society has filed a public interest litigation (PIL) in the Bombay high court, seeking free treatment from the state government.

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The group has also sought price control of the medicines used for treatment of haemophilia under the Drug Price Control Order.

A division bench comprising chief justice Mohit Shah and justice Nitin Jamdar issued a notice to the state health department last week. The case has been kept for hearing on August 23.

We decided to file the PIL only after lobbying with the state government for about six years. The state has been dragging their feet on the issue," said Paresh Parmar, secretary, Haemophilia Society, Mumbai Chapter.

The PIL relies on a 2006 Delhi high court order in a PIL filed by Haemophilia Federation of India directing the Delhi government to provide free treatment to haemophiliacs. When poorer states such as Bihar, Uttar Pradesh and Jammu and Kashmir can provide free treatment for haemophilia patients, why not Maharashtra?" asked Parmar.

Most haemophilia patients suffer bleeding episodes at least once or twice a month and need blood component therapy immediately. Even a middle-class person cannot afford the prohibitive costs. Many suffer from internal bleeding of their joints that leads to disabilities," said Anil Lalwani, former president of Hemophilia Federation of India.

The petition cites the case of Devang Bhanushali, 15, who died of brain haemorrhage in the 1990s, owing to lack of adequate treatment.

As per the state policy, hemophiliacs are entitled to free blood transfusions. We do not need blood transfusions. Our body only lacks the anti-hemophiliac factors. We have had many cases of HIV and hepatitis C infection among our members due to transfusion of infected blood," said Parmar.

The Maharashtra government has submitted several proposals to set aside money for the prevention and treatment of haemophilia and other blood disorders such as thalassaemia and sickle cell anemia. The National Rural Health Mission (NRHM) proposed to allocate about Rs150 crore for the treatment and prevention of blood disorders. However, the proposals are still pending approval.