A few days ago, the Sickle Cell Anaemia Patients Association in Wayanad started a campaign against Kerala government. The Association is alleging apathy from the government towards hundreds of people, most of them from tribal communities, who are afflicted with sickle cell anaemia. This type of anaemia affects a person’s red blood cells and results in several things like excessive fatigue and joint pain.
The Association is alleging that those affected by the disease have no support from the state government including healthcare, pensions and jobs, despite being promised the same. They had planned an indefinite protest against the government, which was set to begin on March 11. However, after Kerala Health Minister KK Shylaja reached out to the Association heads, it has been put on hold.
“The health minister contacted us and we will be meeting with her on March 14 to discuss the issues we have all been facing. So we have decided to postpone the protest,” said CD Saraswathi, secretary of the Association which had planned to protest in front of the collectorate office in Wayanad.
This particular form of anaemia affects a large number of the tribal population in south India, yet little attention is paid to the problem. Sickle cell anaemia, sometimes called sickle cell disease, is a genetic disorder caused by a mutation in the hemoglobin of red blood cells rendering them incapable of retaining oxygen molecules and distributing them properly. In Wayanad, the mutation causing sickle cell anemia is present in extremely high levels, particularly among some tribal communities.
Red blood cells as seen under the microscope in sickle cell anaemia (Courtesy: flickr/scooterdmu CCBY2.0)
The resulting red blood cells take on the form of a sickle in appearance, hence the name of the disease. Sickle Cell Anaemia Patients Association in Wayanad has been working to draw awareness and attention to the plight of the many diagnosed in the district. “There are at least 800 people in the district who must have been affected by some form of it. Previously the government had stated that it would provide financial support to those who are affected, it’s not been done,” laments CD Saraswathi, one of the heads of the Association.
“The government had earlier promised pensions to those affected - Rs 2000 per month for general category patients and Rs 2500 a month ST category patients,” she adds. However, for almost seven months, despite repeated pleas of the affected community, the government has yet to take any significant action to help those who are living with the disease.
Living with sickle cell anaemia
Those with sickle cell anaemia may struggle to perform daily tasks or hold down a job due to their health. “I am lucky to be working, but not everyone is able to,” says Saraswathi. Breathlessness, excessive fatigue, joint pains are all seen commonly among those presenting with the disease.
Dr Santhosh Kumar, a paediatrician from Bishop Hospital in Mananthavady, explains to TNM that the symptoms of the illness often manifest from childhood.
“Often children are brought in with hemolytic anaemia; parents might complain that the child falls ill often. Diagnosis is made by adolescence. In our hospital, we automatically screen certain children for the anaemia. Among certain tribal groups, it is seen very frequently, so if they present with certain off these symptoms, we immediately check for it,” he says.
Treatment for those diagnosed with it is extremely supportive-based. Nutritional supplements and environmental support to ensure that the child is well nourished is the primary concern for doctors. In some cases, if the family can afford it, blood transfusions may be done.
One of the major issues, Saraswathi tells us, is inability of the affected people access healthcare. “Primary thing that we need is a special unit in the district itself,” she says. The District Hospital in Mananthavady was supposed to have had a unit for sickle cell alone, but it has not been opened. As a result, people are struggling to receive prompt healthcare.