The theme of World Haemophilia Day 2017 is ‘Hear Their Voice’, but ironically, the voice of over 4,000 Haemophiliacs in Karnataka is yet to be heard.

One in every 10,000 people suffers from Haemophilia (an inherited bleeding disorder in which a person lacks or has low levels of certain proteins called clotting factors and the blood doesn’t clot properly resulting in excessive bleeding).

It is estimated that India accounts for over one lakh Haemophiliacs, while there are over 6,000 Haemophiliacs in Karnataka. However, only 1,600 Haemophiliacs have been identified across the state, while the fate of over 4,000 Haemophiliacs is not known, according to Karnataka Haemophilia Society president (Davangere) Dr Suresh Hanagawadi.

There are 550 registered Haemophiliacs in 13 districts of North Karnataka, including 156 from Davangere district, while 10 districts of South Karnataka account for 772 Haemophiliacs, including 491 from Bengaluru Urban district. Malnad and coast region contribute for 175 patients.

“Hurdles in identifying Haemophiliacs and registering them for treatment are many,” says Dr P Kallanagouda, himself a Haemophiliac, serving in Kudligi taluk of Ballari district.

There is lack of awareness about Haemophilia among doctors, public and officials. The government has not taken up consistent campaigns as in the case of HIV-Aids, malaria or tuberculosis. Centres to diagnose Haemophilia are located in Bengaluru, Davangere and Manipal.

People from across the state are forced to visit these places for the diagnosis of the disease. Hence, prevalence of Haemophilia in many areas has gone unreported, Dr Kallanagouda says.

The Karnataka Haemophiliacs Society has been demanding setting up of more centres across the State to register the unregistered patients.

When contacted by DH, Shalini Rajneesh, principal secretary, Health & Family Welfare Department, said: “The government has invited tenders to set up diagnostic centres at every district headquarter and the work would begin in June. The department has finalised a lot of campaigns to create awareness among the  public about Haemophilia.”

The major problem Haemophiliacs are facing is irregular supply of factors (deficient clotting protein injected to a Haemophiliac to prevent bleeding) at district hospitals and medical colleges due to technical procedures. Moreover, there are fewer bidders as the cost involved in procuring the drugs from Western countries is too high.

Currently, Karnataka is reportedly facing shortage of factor-VIII due to lack of supply. However, Dr Sachidananda, director, Medical Education, said: “We have sufficient stocks to supply various factors to medical colleges and district hospitals. 

We are inviting tender for the supply of additional factors.”

Treatment expensive
Haemophilia is low volume and high cost disorder as a patient needs between Rs 1.5 and Rs 2 lakh per year for treatment. Western countries follow prophylaxis methods (injecting deficient clotting protein thrice a week to prevent bleeding), while India follows episodic method (injecting deficient clotting protein after bleeding starts).

The prophylaxis method involves huge cost. Pharmaceutical companies in the West follow DNA recombinant technology to prepare deficient clotting proteins. Since the cost of such a procedure is too high, the Indian pharmaceutical companies are not involved in manufacture of such drugs.

May be listed as Bench Mark Disease
Haemophilia is included in disability draft bill, but hasn’t been covered under Bench Mark Diseases (B­M­D­) in the bill. The Central government extends facilities to patients suffering from BMDs for their social empowerment. The Haemo­philia Federation of India’s request to include Haemophilia in the BMD chapter has been referred to the Medical Advisory Board for a review and a positive review is expected. The bill has been tabled in Parliament.