On the occasion of the ‘World Sickle Cell Day’ on Saturday, health experts have noted that while early testing of the genetic disease can help cut down complications, marginalised groups like those in the tribals areas often face limited access to quality care for the inherited blood disorder that affects hemoglobin. Consider this: Nearly 20 per cent of tribal children with Sickle Cell disease (SCD) die before reaching the age of two, and 30 per cent children die after suffering excruciatingly painful episodes.
“More awareness and implementation of cutting edge technologies like genetic therapy and Bone Marrow Transplant (BMT) is needed to reduce their sufferings,” they said. Though, given that even basic much-needed facilities like diagnostic machines and drugs like hydoxyurea are yet to reach them, talking about providing advances technologies seems to be a far-fetched dream so far. In fact, given that in many parts of their habitats, d patients do not even manage to get a daily pill of hydroxyurea that can reduce their pain, prevent hospitalizations, improve function and save lives speaks volumes of the apathy of the authorities towards the sector.
“The SCD which is the most prevalent inherited blood disorder, is widespread amongst many tribal population groups in India. There are around 13 lakh people affected by the disease every year in India. More-over the sector is mired with myths. For instance, still many are under the impression that it is infectious disease.
“While there are several cost-effective interventions which have successfully cut down morbidity and mortality from SCD in developed nations, the access to care for SCD in the tribal regions in India is limited,” said Dr Rahul Bhargava, principal director, Hematology, Fortis Memorial Research Institute in Gurugram.
For instance, authorities in Chhattisgarh, which has a sizable patients having sickle cell condition, during a random sample survey found that they do not even have sufficient diagnostic machines to screen the school kids to detect if they were suffering with the blood disorder.
This was revealed by Chhattisgarh Health Minister TS Singhdev at a webinar conducted at the initiative of Surajpur district collector Dr Gaurav Kumar on Saturday. Singhdev said that the State Government is planning to set up a research institute to ensure providing all the facilities related to the disease under one roof.
Geographically, there is a Sickle cell belt in India comprising some tribal communities in Madhya Pradesh, Maharashtra, Gujarat, Kerala, Tamil Nadu, Odisha besides Chhattisgarh, with an estimated three per cent of the tribal population suffering with the blood disorder. Another 23 per cent carries and transmits the sickle cell gene to their children who are the worst sufferer, wreathing in pain in the absence of adequate and timely medicine and medical facilities. Average life span of the affected person is just 40 years.
Nearly all tribal communities living in forested terrains across the country, have cases of sickle cell anemia.
K Vijayakumar, director, education, Nilgiris Adivasi Welfare Association, who has been working with tribals in Tamil Nadu, said that, “For better outreach and impact, the need of the hour is to establish a specialty hospital with modern equipment to screen and treat sickle cell patients in the State.
“This hospital should also be equipped to provide community outreach, genetic counseling and appropriate intervention measures, he said to a news agency.
“The only cure for SCD is getting a bone marrow transplant (BMT), which is a procedure to replace damaged or destroyed bone marrow with healthy bone marrow stem cells. Stem cells are easily taken from the donor and planted in the recipient.
“After the BMT procedure, the patient can lead a healthy and normal life,” explained Dr Nita Radhakrishnan, Associate Professor and HOD, Department of Pediatric Hematology-Oncology at SSPHPGTI, Noida.
Dr Bhargava echoed similar views and stressed upon setting up more BMT centres, creating awareness among people, ensuring medicines and strengthening of patients groups who can demand more facilities for the welfare of the sector.
On the occasion, at a separate event online, Union Minister of Tribal Affairs, Arjun Munda, and Minister of State of Tribal Affairs, Renuka Singh Sauta, flagged off mobile vans under ‘Unmukt project’ for strengthening screening and timely management of SCD in Khunti district of Jharkhand and Kanker in Chhattisgarh, 2 tribal districts with high prevalence of SCD among tribals.
Munda stressed on need of real time data which provides relevant information related to Sickle Cell patients and their needs in respect of testing, drugs and other infrastructural requirements while Renuka Singh pointed out that SCD is affecting more women and children and nearly 20 per cent of tribal children with SCD die before reaching the age of two and stressed on increasing the access to care for such patients in tribal region in the country.
Anil Kumar Jha, Tribal Affair Secretary said that steps would be taken in collaboration with the Union Health Ministry to ensure facilities for diagnosis and treatment of SCD are available even at the PHC level.
“These ideas need to be implemented at the ground level at the earliest. Many youths' and kids' life fading fast,” said an activist in the sector.
Tackling Sickle Cell Disease
*Sickle cell anemia cannot be cured but can be treated.
*Marriage counseling will help in arresting the spread of the disease.
*Screening all age groups is essential from newborn to the old
*When screening antenatal women for sickle cell diseases, husbands may also be screened to ensure the child will not be at risk. If a foetus is found to have sickle cell disease legal medical termination of pregnancy may be advised.
*Rehabilitation of sickle cell patients needs attention with compensation and suitable employment opportunities provided.