The colour-coded cards can be matched before marriage to understand the risk of sickle cell disease in the child born from the union, the minister said.
Prevalent among the tribal population in India, sickle cell disease is a genetic condition that affects haemoglobin — responsible for carrying oxygen in the body– in red blood cells. Anaemia, debilitating acute and chronic pain, infection, acute chest syndrome, stroke, and renal failure are among the problems it can lead to.
Manadviya said PM Narendra Modi as the Chief minister of Gujarat was the first to make the fight against the disease a top priority, as it targeted the most deprived sections of the society. “Our programme will be integrated with the National Health Mission and we will work with States and Tribal ministry on this. The focus will be on awareness and screening for prevention.”
There are approximately 200 districts in the country where the disease is prevalent, mostly in Maharashtra. Madhya Pradesh, Chattisgarh, Gujarat, Rajasthan, Jharkhand and Odisha.
An official from Gujarat said in 2006 the state had become the first to incorporate the programme to prevent sickle cell anaemia in the state government’s health agenda, identifying 14 districts that were the most affected.
“It was integrated with the state government’s van bandhu (tribal welfare)programme. Laminated color coded cards were given to all screened persons, which were used for marriage counseling so that two yellow card people could avoid marriage. We adopted a policy of screening adolescents so that we could diagnose the sickle cell gene in pre-marriage age. We had also reached out to priests and religious leaders, and leaders from predominant communities in south Gujarat such as Dhodiya patels and Chaudharys to make this possible. Major blood banks and organisations such as the Red Cross were also roped in. This is why the severity of the disease is less than 1.5 percent and genetic incidence has also significantly come down.”The official said the state government put in place an expansive programme to counter the disease which included primary screening, marriage counselling, counselling of patients and their families, clinical evaluation of suspected patients, management of chronic complications, apart from free distribution of folic acid and analgesics and safe blood transfusion. “We aimed at having at least one counsellor for every two primary health centres. It started with five districts surrounding Surat and later spread to nine ST dominated districts.”
Mandaviya added that the ministry has already started work and the main focus would be on generating adequate population-level awareness. “Prevention is key here,” the minister added. He added that the budget makes significant intervention in seven key areas of health, including boosting research.
Sitharaman as part of the budget also announced that certain select laboratories under the country’s apex biomedical research regulator, Indian Council of Medical Research (ICMR), will be opened for researchers in the private and public sector.
“This will boost collaborative research and innovation and will benefit several researchers who do not have access to high-tech laboratories,” Mandaviya said, adding that the ministry will soon identify ICMR laboratories where researchers from outside will be allowed to work.
