Every year International Thalassaemia Day is observed on 8th May around the world to create awareness on Thalassemia among general public & to boost the moral of Thalassemics & their parents. This year The Theme for International Thalassaemia Day 2019 is
” Universal access to quality thalassaemia healthcare services:
Building bridges with and for patients”
On this occasion, Health Deptt of Govt of Delhi is observing the day in an innovative manner to further strengthen the Thalassaemia Prevention & Control Programme.
Dr S K Arora, Addl Director Health, Govt of Delhi said that instructions have been issued to celebrate this day as Thalassaemia Awareness Pakhwada wef 01-05-2019 to 15-05-2019 (Fortnight Campaign ). Various Awareness/ Sensitisation programme for Public , patients , Pregnant ladies & school students/teachers and training of medical/paramedics are being held in Health facilities, schools and communities to create awareness on Thalassemia & it’s prevention, adds Arora
Dr Arora said that Thalassaemia major is genetic disorder, passed from parents to children. Thalassemia major birth takes place only when a Thalassemia Minor marries another Thalassemia Minor. Thalassaemia carrier are common in general population. Every year around 10,000 to 12,000 children are born with thalassemia major in India. There are around two to three lakh thalassemia affected people in India currently. According to ICMR study 1 out of every 18 births is a thalassemia carrier in Delhi. In Delhi around 200 Births of Thalassaemia major takes place every year. All these patients require repeated & regular blood transfusion (Every two to four weeks) and iron chelation therapy for survival. The average cost per patient is Rs.50,000 – Rs.2,00,000 per year which is bound to increase further with inflation. A Thalassaemic child on an average requires 30 units of blood every year. All these thalassaemia major births can be completely prevented through awareness/sensitization & timely screening adds Arora
He further said that as per GNCTD policy all Pregnant ladies in 1st 3 to 4 months & all 10th class students of Govt/Pvt sector needs to be mandatorily screened for Thalassemia trait so as to prevent each Thalassemia major birth. Prevention is the only strategy in view of lack of proper treatment except for lifelong blood transfusion & drugs says Dr Arora
In Delhi the diagnosis & management through blood transfusion and drugs is available free of cost in major Govt Hospitals. For 10th class students screening, 1st we are sensitizing the teachers, students and parents & then will go for testing, said Arora.
Dr Arora further adds that ” we are interacting with Deptt of Education & CBSE to see the possibility of recording Thalassemia trait status on 10th class passing certificate with remarks that Thalassemia trait positive is not a disease so that one can remember the Thalassemia trait status till the marriage. 10th class certificate being birth certificate also is frequently used throughout life as for higher studies, employment purpose, ID & many more
Schemes so it will act as a reminder for parents & students to remember till the age of marriage.
” To strengthen the program further in Delhi, we have evolved a reporting format which is a checklist of 11 points which acts as informative / educative & implementing tool at the level of health facilities & Monitoring tool at the level of State cell. It will also create a registry of Thalassemia major cases apart from indicating the prevalence of Thalassemia minors in the state.” adds Dr Arora.
We are promoting the slogan that whether you go for kundli Milan or not but Thalassemia screening is must before marriage , before planning Pregnancy & in 1st 3 to 4 months of pregnancy to prevent each Thalassemia birth, he adds further.