Treatment Available! But not in the reach of common man in India

Genetic disorders are rare conditions that are given a low public health priority in India, even though these account for significant suffering of patients and their family members. There is no insurance and no free or affordable treatment! India is the second most populous country with almost 1.2 billion people in the world but the numbers of PWH (people with hemophilia) on paper/registered are very few i.e.16000 approximately. Incidence of hemophilia is 1 in 10,000. So a small calculation would give you the idea of number of PWH undiagnosed yet in India i.e. 1,00,000 approximately. That’s a huge number!

India is among one of the lowest using AHF countries. The extremely low per capita use of treatment product, despite having the second or third largest number of global patients with haemophilia A, illustrates the large treatment gap that exists in the country. Due to lack of awareness many PWH don’t even know what exactly they are suffering from and are treated for something else. Don’t want to imagine only how the undiagnosed Patient’s condition would be!The treatment approach is different here from the developed countries i.e. if possible then treat with minimal dose of factor but most important is basic first aid measure - RICE technique. Most of PWH have joint issues and deformities at the very young age itself. Many don’t even complete their education due regular absenteeism. In hemophilia, prevention is more important than treatment. If there is free or affordable treatment then one could lead almost normal life. But here we cannot have the basic on demand treatment only due to unaffordability. Only BPL (Below Poverty Line) category can avail free AHF (Anti Haemophilia Factor) from Haemophilia Society and some Government Hospitals. People like us are left with no choice other than buying or not having factors.

Cost of On Demand Treatment for a joint bleed with basic minimum dosage of By Passing Agent for my son

Product Name	Recommended Dosage By Manufacturers	Cost	Cost of minimum dose of Bypassing Agent for my son 31kgs at present (Jan 2015)	Cost for the recommended dose by Manufacturers for my son 31 kgs at present (Jan 2015)
Feiba 500 IU/ 8-12 hrs interval	50-100units/kg every 12hrs	14,000 INR or 224 US$ (Hemophilia Society price)   30,000 INR (MRP) or 480 US$	14,000 INR or 224 US$ for 500 IU (1 dose of 500 IU is a usual practice for a child of 30kgs with joint bleed)   60,000 INR (MRP) or 960 US$ for 500 IU	42,000 INR or 672 US$ for 1500 IU (50 IU/kg)     90000 INR (MRP) or 1,440 US$ for 1500 IU (50 IU/kg)
Novoseven rt 1mg/2-4hrs interval	90 mcg/kg every 2-4hrs Until hemostasis is achieved	43,000 INR MRP or 688 US$    not available in Hemophilia Society	129,000 INR or 2,064 US$ (1dose is a usual practice to stop a joint bleed)	258,000 INR or  4,128 US$ for 2 dose (3+3mg)

Note: The cost mentioned here are for 1 joint bleed with minimum dose  for my son which is a usual practice in India. The cost increases with the dosage and frequency of the treatment. In a year, minimum 16 to 20 joint bleeds can happen and can be more too plus muscle bleeds extra. 

As parents, is it wrong to ask the Government for free or affordable treatment so that we can keep our child on prophylaxis and prevent him from bleeds? Every citizen is entitled to the Right to access to proper Health Care/Medical Treatment. Our children are born healthy but no treatment is leading them to have painful and disabled life. It is unacceptable for us to have a treatment and not able to get it just because it too expensive. 


Characteristics of Hemophilia

1.	The cause	Mutation in clotting factor VIII or IX gene, causing hemophilia A and B, respectively. Gene is located on the X chromosome.
2.	Signs and symptoms	Spontaneous bleeding, haematomas, haemarthroses and haematuria, soft tissue bleeds, including life threatening bleeds of the central nervous system. Frequency dependent on residual clotting factor activity, and genotype of patient.
3	Complications	Haemarthrosis, transfusion related infections such as HIV and HCV, development of Inhibitors.
4	Social issues	Poor quality of life due to chronic pain, frequent absenteeism due to bleeding episodes resulting in poor schooling and poor employability, gender related issues due to victimization of mother or maternal guilt, economic consequences due to high cost of treatment product and the need to make out of pocket payments.
5	Estimated incidence	Hemophilia A 1 per 10000 male births. Hemophilia B 1 per 30000 male births.
6	Epidemiology	Hemophilia A is the more common disorder constituting 70 per cent case burden.
7	Genetics	70 per cent patients report family history and 30 per cent are sporadic cases. If mother is a carrier then 50 per cent risk of transmission of the defective gene to son.
8	Treatment	Prophylactic infusions of clotting factor concentrate or infusion on demand to stop bleeding. Indian patients usually manage bleeds through basic first aid measure, which is rest, ice application, compression and elevation of affected limb (RICE).
9	Haemophilia care in India	Clotting factor concentrate is available in Hemophilia Federation of India (HFI), a patient organization which has 76 chapters throughout the country. Treatment product is dispensed through these centres and are free for only BPL (Below Poverty line) category. Some State Govt. hospitals have free treatment but it depends on minimal dosing cum availabilty. These hospitals have very limited stock of factors/medicines and sometimes out of stock also.
11	Prevention	Through carrier detection and prenatal diagnosis.