Though prophylaxis treatment is yet to become a reality for majority of people with haemophilia in India because of its exorbitant cost, data from new studies have shown that patients with the genetic bleeding disorder who switched from on-demand treatment to extended half-life (EHL) prophylaxis reported a beneficial results, including quality of life improvements and annual bleeding rates.
The data was from joint studies conducted by Sobi and Sanofi. It was presented recently at the 27th Congress of the International Society on Thrombosis and Hemostasis in Australia.
Armin Reininger, head of medical and scientific affairs at Sweden-based Sobi, said the clinical data supports the observation that "the introduction of EHLs has allowed for people with haemophilia to live a life beyond hemophilia, with increased quality of life and a greater ability to engage in sports and activities."
The study showed that people who switched from on-demand treatment to Sobi's Elocta (prophylactic rFVIIIFc) or Sanofi's Alprolix (rFIXFc) saw the improvements, including improved joint health and quality of life, as per the report.
Elocta is a recombinant clotting factor therapy developed for haemophilia A and Alprolix is a recombinant clotting factor therapy developed for haemophilia B. Both drugs use Fc fusion technology to prolong circulation in the body.
According to the data from the A-LONG and ASPIRE studies, 96 per cent of patients who switched from on-demand to prophylaxis continued prophylaxis for more than six months with a median duration of prophylactic treatment with rFVIIIFc of 4.8 years, the companies said. Joints with pain decreased in 29 per cent of subjects and joint health measured using modified Haemophilia Joint Health Score was improved, as was quality of life in relation to areas such as sports, leisure and physical health.
In the haemophilia B studies, results were similar, with 96 per cent continuing prophylaxis for more than six months with a median duration of prophylactic treatment with rFIXFc of 3.6 years. Quality of life improved, in relation to areas such as sports, leisure and physical health.
It is estimated that in India there are about 1 lakh population suffering with hemophilia but as per the data provided by the Haemophilia Federation of India (HFI), just 20,000 patients are registered.
Dr Nita Radhakrishnan, assistant professor at Noida-based Super Speciality Pediatric Hospital said "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."