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Journalism of Courage
Union Finance Minister Nirmala Sitharaman may have announced a national mission to eliminate Sickle Cell anaemia by 2047 but the apathetic health infrastructure and lack of implementation of existing schemes for the life-threatening blood disorder make the target questionable.
This is a genetic or hereditary disorder, in which red blood cells become oval-shaped due to the deficiency of oxygen in blood. It occurs when a person inherits two abnormal copies of the haemoglobin gene from each parent. The disease can be tackled with lifetime medication by taking folic acid and Hydroxyurea along with pain medication. It is most common among the tribal population with a nine per cent positivity rate.
LACK OF HEALTH INFRASTRUCTURE
Let’s take the example of Maharashtra which shares 29.8 per cent of the national disease burden, the second highest after Gujarat.
Last February, Minister of State for Tribal Affairs Renuka Singh Saruta had revealed that in Maharashtra, a total of 1,69,191 people were detected with the trait—carriers who don’t show symptoms but can pass on the trait on to their children— after Gujarat, where 7,29,561 were identified. As many as 14,141 patients with Sickle Cell anaemia were diagnosed in Maharashtra after Gujarat (29,266). However, the state’s figure from the public health department shows a higher number with 18,000 registered patients.
But the lack of health infrastructure, medicines and specialists not only left them crippled but also pushed up mortality rates. Let’s reflect on Nandurbar— a district with 70 per cent tribal population, which shares 30 per cent of Maharashtra’s disease burden. The Indian Express last December had reported about 37-year-old Burshalal Vasane, who had been left differently-disabled due to improper treatment — his right leg had slightly bent inward and he had to walk with the help of a stick. “Due to the disease, the blood flow in my right leg has been obstructed, leading to the deformity,” he had said. Still, he would hop from one primary health centre to another, which would turn him away only with folic acid supplements and pain killers in the absence of Hydroxyurea tablets. “If only I got the proper treatment earlier, I wouldn’t have turned into a cripple,” lamented Vasane. This forces the tribals to rely on alternative healers.
In some cases, the patients are even forced to travel to neighbouring Gujarat for treatment. Indrasingh Gavit, a farmer from Navapur, has two sons living with Sickle Cell anaemia. His 22-year-old younger son, Yosef Gavit, developed deformity in both his knees. Last month, they went to a private hospital in Surat, Gujarat, for surgery.
Latika Rajput, a member of the government-appointed committee, last week told the district officer that without regular blood camps, the district was missing out on diagnosis. “As the district doesn’t have the infrastructure to do blood tests, they outsource it to a private laboratory. But in their contract, the list of approved testing doesn’t mention Sickle Cell anaemia. So, the testing has come to standstill,” she said.
When it comes to paediatric patients, the Hydroxyurea capsule has to be broken and administered, risking its effectiveness, to provide measured doses. Only 5 mg of Hydroxyurea dosage is allowed per kg of body weight. Which means a 10 kg child needs 50 mg of the drug, difficult to administer in the absence of a liquid syrup.
NO BONE MARROW CENTRE
In close-knit tribal communities, where healthcare accessibility is limited, the disease continues to spread. It can be cured with bone marrow transplantation but most tribal districts don’t even have a bone marrow centre. “Severely ill patients, where bone marrow transplant is the only hope of survival, are being sent to Nashik or Mumbai government hospitals. In private hospitals, it costs over Rs 25 lakh which these poor people can’t afford,” said Gautam Dongre, Secretary of the National Sickle Cell (NASCO). “In some cases, the families, who are farmers or daily wage earners and who have other children to feed, can’t even afford to stay in these cities for days. Ultimately, the sick child dies,” he added.
NO BLOOD BANKS
Some patients often need immediate blood transfusions but finding a blood bank is another uphill task. Said Sai Tulsigari, who runs an ambulance service in the forests of Gadchiroli, “Talukas like Sironcha, Bhamragad, Mulchera and Etapalli have high incidence but no blood banks. We have to carry patients to district hospitals. In fact, the existing blood banks don’t even have blood. Then we ferry donors to the centres.”
According to a Maharashtra Government resolution dated March 10, 2015, Sickle Cell patients are entitled to free state transport (ST) under the state’s health mission but no such provision exists on ground.
These kinds of infrastructure loopholes increase fatality rates. But the state lacks the data of the total number of fatalities related to Sickle Cell anaemia. When asked, Dr Mahendra Kendre, ADHS blood cell of the State’s Directorate of Health Service, said that there is no mechanism to check back if the patient has died and update the data. “When a patient dies, the kin don’t inform the health department. So, we don’t have the fatality data of Sickle Cell Anaemia,” he added.
NO MEDICAL ALLOWANCE
Under Sanjay Gandhi Niradhar Anudan Yojana, patients with disability and whose family annual income is up to Rs 21,000, are liable to get Rs 600 allowance per month. But due to lack of awareness and bureaucratic apathy, many like Vasane haven’t received the benefits. “As the cells become oval-shaped, it affects the blood flow, which leads to avascular necrosis (death of bone tissue due to a lack of blood supply), stroke and other deformations. So, SCA has been added in the list of differently abled welfare schemes but most of the patients across the state are unaware of it due to lack of sensitisation,” said Dongre.
NO MARRIAGE COUNSELLING
Marriages among kin are driving Sickle Cell disease in tribals. Dr Parth Ganatra, Pediatric Hematology-Oncology at BJ Wadia Hospital for Children at Nanavati Hospital, explained that the restrained marriage culture among the tribal population contributes to high incidence of Sickle Cell anaemia. “The Adivasis generally don’t marry out of their enclosed communities. This increases the chances of two carriers getting married with the same traits. Their offspring inherit the blood disorder.”
Genetic counsellors should focus on pre-marital screening and positive patients should be informed about their implications and family planning. However, no such initiative has been taken in the state. It is suggested that prenatal diagnosis of be one by the technique of PCR. But it has not been done in any of the districts.
