AROUND 125 km from Mumbai, a family among the Warli tribals of Valwanda village suffers sickle cell disease through heredity. While they battle constant body ache and fatigue because of the ailment, the Bhaskars do not know the name of the disease or understand much about it. Pramila Bhaskar (22) only knows it is rakht (blood) related. She has been suffering from it since birth, but came to know of it in 2010. Her sister and mother suffer from sickle cell too, and so does her seven-year-old daughter. Bhaskar’s six-month-old son is yet to be tested.
As the local public health centre (PHC) seldom stocks folic acid tablets needed to treat sickle cell, she travels an hour to another PHC for her monthly stock. With poor government intervention, Bhaskar’s story is identical to that of several other tribals who suffer from the disease in isolated pockets and await proper treatment.
Meanwhile, the state’s Rs 960 crore budget for a sickle cell disease programme remains stuck since last year, affecting awareness campaigns, screening and treatment of the disease.
In Palghar for instance, there is no counsellor to guide 458 sufferers and 4,887 carriers. Sickle cell, which is transmitted from parents to child, can be avoided if two patients — called sufferers — do not marry each other. In close-knit tribal communities, where knowledge of this is absent, the disease continues to spread.
Across Maharashtra, from four patients diagnosed with the disease in 2008-09, the count rose to 2,192 in 2014-15, according to state figures. NGO Navoday Gramin Sanstha, which monitors sickle cell in Palghar, claims the figures are much higher. “We need more funds, more electrophoresis centres and more counsellors for this programme,” says Mushtaq Kotwal, from the NGO.
Sickle cell disease is a red blood cell (RBC) disorder. Instead of the normal doughnut shape, suffers’ RBCs turn sickle-shaped, and eventually die. Patients often require blood transfusion and sometimes joint replacement. Bhaskar and her family were diagnosed through a rare health camp in 2010. She complains of constant fatigue and joint pain. “I have already had two blood transfusions with difficulty,” she says. Her visit to the closest centre to screen her son is pending. “We don’t have the money for that.”
According to a state government resolution dated March 10, 2015, free state transport (ST) bus travel is offered to sickle cell patients for treatment under state’s National Health Mission. However, no such provision exists on ground. Swapnil Daswat (15), who lives in Dhundalwadi village near Gujarat border, required a hip replacement surgery due to the disease two years ago. “We needed Rs 2.5 lakh for surgery in JJ. I could not get operated,” he says.
According to Dr Abhay Dixit, state coordinator for sickle cell, the free travel provision has not been implemented owing to delay in sanction of funds by the tribal, health and social justice department. In Dhundalwadi, there are 39 sufferers of sickle cell of which 17 are girls. Says health worker Ramesh Kaute, “There is also social stigma. Some do not marry girls with this disease, thinking they are weak.”
According to experts, the major reason of sickle cell escalation is lack of counselling. “In Palghar, the last counsellor resigned six months ago,” says health worker Nidhi Patil.
Paucity of funds is another factor. Of the Rs 2,400 crore sanctioned in the 2015-16 budget, the Centre released its 60 per cent share, but the state defaulted on its 40 per cent. According to Navoday Gramin Sanstha, health workers’ salaries are pending for the past two months. “With lack of funds, we cannot hold awareness camps or reach out to isolated tribes,” says Kotwal.
Procuring folic acid for treatment ia a major issue. To control symptoms, sufferers must take the tablet every day. But with the state-appointed contractor for the tablets moving the Bombay High Court over irregularities in the process, the supply has stopped and new tenders can’t be called until the case is over. “We have asked all districts for local procurement,” Dixit said.
The only incentive that experts hope will attract more tribals to get themselves screened is a provision of Rs 600 every month to sickle cell patients. “But we need to publicise this enough for them to step forward,” admits Dixit.