Indian Tribal News Service
New Delhi
The Government has planned a comprehensive national programme for dealing with Sickle Cell Disease (SCD). The programme envisages ante-natal screening, setting up of care centres, and management and rehabilitation of the afflicted patients.
Finally “So far disease being tackled in a piecemeal manner with just a few states like Maharashtra and Gujarat having a full-fledged comprehensive programme to prevent the SCD,” sources said.
In fact, the new approach spearheaded by the Ministry of Tribal Affairs (MoTA) involves care right from birth; as long as reaching out to carrier parents; once set up a registry: adequate medicines and right nutrition; and management and rehabilitation of patients across States.
Hence the Government will rope in ASHA workers to implement the programme on a mass scale.
- Sickle Cell Disease is a genetic blood order. Red Blood Cells become sickle shaped and block blood vessels leading to a painful crisis
- More prevalent among tribes and in villages, but now also being detected in urban areas of India
- At the present time highest frequency of SCD in tribal belts of Central, Western and Southern India covering Maharashtra, Madhya Pradesh, Chhattisgarh, Jharkhand, Gujarat, Andhra Pradesh and Odisha
- After all as per ICMR surveys, prevalence of Sickle Cell gene is 5-34% in Scheduled Tribes, who are majorly at a socio-economic disadvantage and are frequently medically underserved
- At least 10% of SCD patients die by the age of 1 year and in many sub-Saharan countries mortality is much higher than that, as per the WHO
- According to ICMR survey, out of 1,13,83,664 persons screened in various States in India, around 9,49,057 carried sickle cell traits, meaning they were carriers while 47,311 had disease
- More than 3 lakh babies worldwide are born with SCD
SCD does not have any cure at present, therefore, any strategy to deal with the disease should focus on prevention and early diagnosis to ensure effective management of the disease and put off a crisis situation, Health experts suggest.
However, the Indian Tribal News talk with the doctor as they suggest focus should be on early diagnosis of the disease, treatment and counselling of patients, they point out.
“SCD is not only prevalent among tribal population and in rural areas but is also being reported from non-endemic States like Uttarakhand besides urban families. In fact, both parents have the Sickle Cell gene, there’s a 1 in 4 chance of each child they have being born with sickle cell disease. Hence, it is important that the carrier parents are counseled properly so that they have a healthy baby,” said Dr. Tulika Seth, Founding Trustee, and Professor of Hematology at All India Institute of Medical Sciences, Delhi
However, there no database maintained centrally on the State-wise prevalence rate of SCD among the tribal population. Hence, its prevalence not known in a definite manner.
“The public health implications of SCD are significant: poor quality of life, lower life expectancy and higher rates of infant mortality. SCD can be cured for some people with bone marrow transplants (BMT). Usually, this process involves replacing bone marrow, which makes red blood cells in an SCD patient, with healthy bone marrow from a donor,” said Dr. Rahul Bhargava, country’s leading hematologist at Fortis Hospital, Gurugram, Haryana
Obviously, Under the new proposed program, the Government also plans to push for setting up BMT centers in each district hospital in the States having high SCD population, sources added.
Outcome of Screening of Sickle Cell Cases in Some Major Endemic States
- State
- Total Screened
- Traits
- Disease
- Chhattisgarh
- 172893
- 21267
- 590
- Gujarat
- 8644928
- 729561
- 29266
- Jharkhand
- 300
- 09
- 03
- Kerala
- 148180
- 2042
- —
- MP
- 386288
- 611
- 312
- Odisha
- 130561
- 25461
- 2999
- Telangana
- 23392
- 617
- —
- West Bengal
- 288
- 62
- —
After all, those with the disease usually struggle with it throughout their life. As long as they usually rely on painkillers, blood transfusions, vaccinations and antibiotics, among other drugs, to prevent or manage complications related to the disease.
eventually, People living with SCD have to make frequent visits to hospitals, and inaccessibility or absence of medical facilities can lead to their early death. Check out more blogs on our website The Indian Tribal News.
What Experts Advise
- Get regular checkups with the doctor
- Take routine medications like folic acid, hydroxyurea and prevent infections by simple steps like washing hands to get some relief from excruciating pain
