WORLDWIDE Prevalence of Hb-pathies:
WHO estimates that each year: Over 3 to 5 lakh babies with severe forms of these diseases are born worldwide, the majority in low and middle-income countries. 5-7% of the world’s population are carriers of a trait gene for hemoglobin disorders mainly sickle-cell disease or thalassemia. They need regular transfusions to survive. Many die perinatally due to α thalassemia major. Over 9 million carriers become pregnant. 10 lakh new carrier couples with over 1.7 million pregnancies. Around 75% are at risk. In principle, all need expert risk assessment and genetic counselling.
BURDEN OF HEMOGLOBINOPATHIES IN INDIA
10,000-15,000 babies with Thalassemia Major (TM) are born every year.
- Sickle Cell Disease – highly prevalent in the tribal populations of Southern, Central and Western states.
- As high as 48% in some communities.
- HbE is common in the North Eastern states, carrier frequency as high as 50%, in some areas.
- Lower frequencies in the Eastern states of West Bengal, Bihar and Uttar Pradesh.
- HbD is present in about 2% of people in Punjab.
- β-Thalassemia higher frequency communities:
- Lohanas and Gaurs.
*It is a myth that only TRIBALS suffer from Haemoglobinopathies.
Sickle cell anemia in INDIA:
•50% of total AS and SS neonates are born in only 3 countries: Nigeria, India and DR Congo
•Estimate for number of neonates with SS born in India per year is 42,016 which is 88% of the total homozygous cases in Asia
•However the prevalence is varies significantly in different populations (0-35%)
•Largely restricted to tribal populations and scheduled casts and other backward communities
Sickle Cell Anemia: A Tribal curse
- Sickle Cell Anemia is a genetic disorder
- A major public health problem, mainly seen among tribals
- Affected are medically underserved & from low socioeconomic class>50% of the world Sickle gene carriers are in India
- Not a priority program at National level
Sickle Cell Anemia is a disease worse than that of cancer – Indian PM Mr.Modi in his 2014 speech in the parliament.
If left untreated –
- 20% of Sickle disease children die by the age of two year.
- 30% of sickle disease children among the tribal community die before they reach adulthood. (ICMR survey-1989)
- As is genetic in nature, the numbers of diseased people are bound to rise, in absence of suitable interventions.
The REAL Problem:
- Irony: Sickle Cell anaemia / Thalassemia are 100% preventable.
- Cause of an unnecessary health and economic burden on the affected family and on health care infrastructure of the country.
- There are nearly 2,00,000 babies born yearly with Sickle Cell anaemia / Thalassemia.
- Each child needs treatment of Rs.2,00,000/- per year. Which means we will spend Rs.10,000 Crore in the coming years.
- Parents missing work and/or losing their job for care leads to loss to economy of about Rs.3,500 Crores annually.
- Loss to future GDP through childhood deaths, in 2017 was calculated to be about Rs.1,000 Crores.
- As of now Prospective couple produce their simple identity cards before the marriage or genetic counselor, counselor predicts the probabilities of their offspring.
- In such a situation the challenge is to find an interpreter to understand the ID card.
- As this prediction requires special skill it is difficult for a health care worker with minimum education or for the prospective couple to predict the Probability on their own.
- Non-availability of centers with genetic counseling discourages the prospective couple from taking advice from person skilled in genetic counselling.
Most cost effective DIY (very easy to implement) innovative solution. For details please click here.
- Awareness drive.
- Identification of patients through Sweeping screening of the population.
- Prevention: Mass distribution of GIPCI (Genetic Inheritance Prediction Counselling and Identification) cards.
- Doorstep services.
Who provides End to End solution?
Neshlin Medtech Pvt. Ltd brings together Indian scientists to Make-in-India a unique turn key End to End patented solution for making Atma Nirbhar Bharat.
- Identification of patients through indigenously developed AI based screening device at IISc Bangalore.
- Our proprietary product a novel system for visual prediction of Mendelian inheritance of single gene autosomal recessive disease, through the use of specially designed cards GIPCI (Genetic Inheritance Pattern identification & Counselling) card, for DIY (Do-It-Yourself) slide-in match making for marriage, therefore, need of genetic counsellor shall minimize. GIPCI Card can be used by marrying couple themselves, all they have to do is to keep one card on the other GIPCI card and the card will instantly reveal the probability of transmission of disease in their children.
- Doorstep services though Rakt Dost – A fully equipped mobile van for Blood testing, card distribution, counsellors, digital awareness material display and distribution, with sate of the art lifesaving blood transfusion/donation facility.