India has third largest population of Hemophiliacs in the world, but lack of awareness, high cost of treatment leaves a large number untreated
- India lacks a national policy on prevention and control of genetic disorders, with no structured national program and negligible institutional support to hemophiliacs
Gurgaon, 17th April, 2015: A genetic bleeding disorder that hinders blood clotting, hemophilia is a dangerous condition that can cause disability or early mortality. Yet, a large number of children fail to be diagnosed early and are left without treatment for a long time.
Every year on April 17, World Hemophilia Day is observed around the world to increase awareness of hemophilia and other inherited bleeding disorders. This is a critical effort with an ultimate goal of ensuring better diagnosis and access to care for the millions who have a rare bleeding disorder yet remain without treatment. World Hemophilia Day provides an opportunity to talk to your extended family and friends, colleagues, and caregivers to raise awareness and increase support for those living with an inherited bleeding disorder.
Paras Healthcare is invested in spreading awareness about Hemophilia and alerting people to the early signs and symptoms of this disease. This manifests in childhood and parents should be aware that the first symptoms of hemophilia are frequent and large bruises and hematomas from bumps and falls. Swelling and bruising may also result from bleeding in joints, soft tissue and muscles.
“Hemophilia is a genetic disease which usually affects males. With absence or paucity of clotting factors in the blood, the blood fails to clot itself after an injury. This can be extremely dangerous in case of a major external injury or any internal injury. Sometimes bleeding occurs inside the joints, leaving the person with damaged and arthritic joints. A lack of care and treatment can leave a person disabled and cause early mortality. However, life with Hemophilia may be difficult but it is not impossible. Timely management, care and prophylaxis are the key to manage the issues,”says Dr V P Choudhary, HOD, Hematology, Paras Hospital, Gurgaon.
In a country like India where 70% of the population accesses the private hospitals for their treatment, there are no set mandates for genetic disorders such as Hemophilia. Although the genetic basis of this disorder has been well studied in India, data on the number of patients, trends of the disorder in India, social costs of the condition and opportunities and competencies for offering genetic counseling through a public health program have not been reported.
The condition manifests in early childhood. Though the figure for hemophiliacs in the country is around 1.5 lakhs, only about 16,000 are registered with the Hemophiliac Foundation of India (HFI). This gap reflects the lack of awareness among the general public about this disorder.
“Living with the disease is challenging. In most cases, the disease is identified in early childhood when an injury or bruise fails to clot. It is hence important for parents to be aware and alert. Today, it is possible to check if you are a hemophilia carrier even before pregnancy. Effective management is crucial to survival. Hemophilia A is the most common form, referred to as classical hemophilia, and results from a deficiency in clotting factor 8. Injections of this factor known as Factor 8-AHF are required to control bleeding episodes. Hemophilia B results from deficiency in clotting factor 9. Today, medical approach to the disorder is highly advanced and a large number of people live long, normal and productive lives by effectively managing the disease,” says Dr V P Choudhary, HOD, Hematology, Paras Hospital, Gurgaon.
At present, the only national programs on hemophilia that provide treatment are barely publicized. The bureaucratic process required to avail of the benefits of national programmes is a deterrent. BPL status, disability status, destitute status is some of the requirements.
India lacks a national policy on the prevention and control of genetic disorders. Though some hemophiliacs do seek NGO and public hospital support for their treatment, the majority are unaware about the disease. Hence the number of registered hemophiliacs in India cannot be taken as the basis for the estimation of the prevalence.
All patients have to take Factor 8- AHF injections which aren’t made in India since indigenous manufacture stopped in the 1990s. Each injection costs between whopping Rs 5000-10,000 for just 250 mcg, an amount that is generally required twice a week by a hemophiliac.
No Indian company is producing all the ranges of factors required to manage different challenges that arise in hemophiliacs. None produce high purity factor or recombinant factor concentrates and the quantity of the material produced is not enough to fulfil the needs of the country. Government initiative for plasma fractionation have not been marketed.
About hemophilia and other bleeding disorders
Hemophilia, von Willebrand disease, inherited platelet disorders, and other factor deficiencies are lifelong bleeding disorders that prevent blood from clotting properly. People with bleeding disorders do not have enough of a particular clotting factor, a protein in blood that controls bleeding, or else it does not work properly. The severity of a person’s bleeding disorder usually depends on the amount of clotting factor that is missing or not functioning. People with hemophilia can experience uncontrolled bleeding that can result from a seemingly minor injury. Bleeding into joints and muscles causes severe pain and disability while bleeding into major organs, such as the brain, can cause death.