In the absence of proper diagnostic facilities in the country, particularly in remote areas, nearly 80 per cent of persons with haemophilia (PwH), a serious blood disorder remain undiagnosed. According to an estimate, there are nearly two lakh PwH in India, the highest in the world.
Haemophilia is a lifelong bleeding disorder that prevents blood from clotting. Delay in diagnosis or treatment can be fatal to the persons with the genetic condition. Also, the repeated bleeding into joints, bones muscles may lead to synovitis, arthritis and permanent joint deformities.
The Health Ministry too admits that a lot is yet to be done in the sector, particularly on diagnostic front which in fact is a first step toward ensuring better treatment and management of the disease.
“There is a need for a network of diagnostic centres across the country that can help first of all in diagnosis and later make people aware about the seriousness of the health disorder. There are disparities in diagnosis also,” admitted Vinita Srivastava, national consultant, Blood cell from the Ministry.
She was speaking at an event “Initiative on Hemophilia Care V- A sensitization program and the way forward, IHC-V” organised here by the Hemophilia Foundation of India (HFI), the umbrella body for registration of the patient with the disorder.
SS Roy choudhury, CEO, HFI, said, “Almost one person in every ten thousand is hemophilic. By this record, there are more than one 1,33,000 persons with Haemophilia in India. Unfortunately, due to lack of adequate infrastructure, we have been able to identify only 22,000 such PwHs so far.
“Also, those who have been identified, are not getting adequate treatment and medicines that are required for proper care, as per the World Federation of Hemophilia. “
Vikash Goel, President (HFI) felt that the identification and diagnosis of the remaining sufferers can only be possible if there are enough trained hemophilia doctors and testing facilities.
According to doctors, cause of haemophilia is the inability of the body to produce the anti-hemophilic factor (AHF) in the required quantity. There is no known cure for this disorder.
Dr Nita Radhakrishnan, assistant professor at Noida-based Super Speciality Pediatric Hospital Doctors said, though the government has done enough under the National Health Mission for haemophilia, proper diagnostic centres have not come up in remote belts of the country.
Also, though, worldwide there has been increasing emphasis on providing Prophylaxis treatment wherein intravenous injection of factor concentrate is given to the persons with haemophilia on regular basis in order to prevent anticipated bleeding, India has just made a beginning. The Ministry has recently started a pilot project at two hospitals in Noida in Uttar Pradesh and Chennai in Tamil Nadu wherein children are being taught how to administer factors at their home itself on regular basis.
Dr Nita Radhakrishnan said that if children get timely factor injections that would prevent them from life threatening bleedings as well as ensure their quality life. The treatment prevents bleeding and joint destruction, helping children with haemophilia be more active, attend school, go for outdoor games and above all, follow a routine life which every child wants to live.
“Though prophylaxis is a costly treatment, its cost-effective in the long-term because it eliminates the high cost associated with subsequent management of damaged joints and improves quality of life,” she said.
