Govt has only assurances for haemophilia patients of city

Payal Gwalani / Apr 17, 2016, 04:41 IST

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Govt has only assurances for haemophilia patients of city

Nagpur: The state government officially believes there is a need for a centre to treat haemophilia in the city, as well as to make available anti-haemophilia factor (AHF) free of cost to patients. However, every time activists ask about the progress of the project, all they get is rehearsed assurances. The city branch of Haemophilia Society of India (HSI) has been trying since 2011 to make AHF available in government hospitals across the state, like it is in Gujarat, Uttar Pradesh, Delhi, Tamil Nadu, Karnataka, Kerala and Rajasthan.The scheme was started on an experimental basis in five centres the next year with the aim of extending it to other centres soon.
“We received a letter from the public health department of the state in April 2014 in which they acknowledged the need for a treatment centre and free AHF,” said Dr Anju Kadu, one of the few trained doctors in the city who treats the genetic blood disorder.
Dr Kadu informed that there were 450 patients currently registered with HSI, 90% of whom are from economically poor background. “The actual number would be ten times more, meaning the disease remains undetected or undiagnosed in so many patients. Donations from private donors and NGOs are keeping some of the patients alive,” she said.
“Over the last two years, we have met several political leaders from the region including Nitin Gadkari and Chandrashekhar Bawankule. Every time we have a follow-up meeting, we are told that our demands will be forwarded to the state government officials,” said president of the society Sarang Nimje. He added all of them added the assurance that they would have an answer within the next couple of months.

Members of the society have also been in touch with government officials. “Some officials from the Central government first told us that there were some financial constraints. By September 2015, the state government seemed ready with the approved plans of the treatment centre that was to be started at Daga Hospital under the National Rural Health Mission (NRHM),” said president of HSI, Nagpur Anuradha Sambre.
She said that state government officials had even assured that the centre would come up by January 2016. “All the haemophilia societies from across the country will be holding a meeting soon where we will decide the further course of action,” said Sambre.
WHAT IS HAEMOPHILIA

A chronic, genetic disorder in which the body of the person affected does not have the chemical that helps blood clott
Only men have this genetic disease, females can be carriers
There is no treatment; to stop any episode of bleeding or after an injury, patients are required to take shots of expensive Anti-Haemophilic Factor (AHF)
Global estimates say around 75% of those affected cannot afford the treatment for haemophilia, activists say for Indians the number is around 90%

Demands of Haemophilia Society of India, Nagpur -

Make anti-haemophilic factor (AHF) available free at all public or district hospitals
Make prenatal screening for haemophilia compulsory
Establish a dedicated care and support centre for patients in all cities with facilities like pathological laboratory, physiotherapy, etc

STRUGGLE TO GET THESE DEMANDS THROUGH -

2011: First started approaching administration trying to make AHF available at all government hospitals of the state
April 2013: Free factors made available on an experimental basis at five centres — government hospitals of Amravati, Nashik, Dhule and Thane and Mumbai’s KEM Hospital. Govt promised the scheme will be extended to all government hospitals in six months
Dec 2013: Two more centres come up, one each in Mumbai and Pune
April 2014: Letter from state public health department acknowledged need for treatment centres and free AHF
August 2014: Just before elections, HSI members met several BJP leaders to enlist their support
March 2015: AHF is made available free of cost at two new centres in Satara and Ratnagiri

About the Author

Payal Gwalani

Payal Gwalani, a reporter for Times of India's Nagpur edition, covers health and weather. Almost every weekend, one can find her attending CMEs with the city doctors. She loves reading fiction novels, surfing through blogs and watching television. Besides writing news reports, she also writes poetry.

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