Hemophilia is an inherited disease that usually affects men. It is a rare bleeding disorder in which the blood doesn’t clot normally. A person with Hemophilia thus bleeds for a longer time than others after an injury. Further, he may bleed internally too, especially in his knees, ankles, and/or elbows. This bleeding may damage his organs and tissues and even be life threatening. In severe Hemophiliacs, even a minor injury can result in blood loss lasting days or weeks, or even never healing completely. In areas such as the brain or inside joints, this can be fatal or permanently debilitating. People with Hemophilia have little or no clotting factor; which is a protein needed for normal blood clotting. There are several types of clotting factors. These proteins work with platelets to help the blood clot. Platelets are small blood cell fragments that form in the bone marrow—a sponge-like tissue in the bones.
Platelets play a major role in blood clotting. When blood vessels are injured, clotting factors help platelets stick together to plug cuts and breaks on the vessels and stop bleeding. The two main types of Hemophilia are A and B. A person with Hemophilia A has low levels of clotting factor VIII (8). A person with Hemophilia B has low levels of clotting factor IX (9). About 8 out of 10 people who have Hemophilia have type A. Hemophilia has a treatment but no cure. With proper treatment, people can at best lead a normal life – not be cured of the condition. To stop the bleeding once caused by a minor injury, a person with Hemophilia requires a minimum of 500 – 1,000 units of Anti-Hemophilia Factor (AHF), which cost up to Rs. 10,000. The requirement for AHF can be even more in case of severe bleeding and surgeries. Besides, this is not a one-time expenditure as a person may injure themselves 3-4 times in a month. The lifelong nature of treatment coupled with the fact that it is expensive, makes it difficult for families to access the same. Most Hemophiliacs are thus not able to get timely, sufficient and appropriate treatment, which eventually has consequences, such as disability, death, HIV/AIDS, Hepatitis B/C infections, and even stress from financial constraints. It is estimated that 65,000 people in India suffer from Hemophilia – out of which only 12,500 are identified. Statistics further reveal that 90% of them belong to Below Poverty Line (BPL) families; and are factory-workers, daily wage earners, rickshaw pullers, vegetable vendors, or engaged as household help in neighboring apartments.
Set up in 1983, Hemophilia Federation India (HFI) is the only national umbrella organization in India that works for the welfare of the PwH. Through a network of 76 chapters across four regions, they provide total quality care, education, psycho-social support, affordable treatment, and economic rehabilitation. The organisation’s efforts extend to all its chapters across the country. From the development of infrastructure and administration systems, to lobbying skills and fund raising techniques, to training of doctors, physiotherapists and laboratory technicians.
Other activities include providing psycho-social support to PWHs and their family members, developing self-reliance and leadership skills through camps, empowering carrier women through the formation of youth and women groups at chapter level, increasing public awareness on prevention of Hemophilia through carrier detection and pre-natal diagnosis, and economic rehabilitation of needy PWH and their family members. The organization maintains a list of the neediest patients. This is based on the severity of the condition as well as family income. AHF is then allocated to beneficiaries as and when required. A second installment is given only after receiving satisfactory proof that the first installment was properly utilized. In case of death of a current beneficiary or underutilized medicine by another patient, a new beneficiary is identified.
These efforts have helped people like Abhilash. As a child, when Abhilash’s mother used to take him on her lap, his muscles used to hurt and he used to develop blue patches on his butt and thighs as the blood flow was interrupted. A doctor’s visit diagnosed him with Hemophilia. He recalls how a broken tooth, due to a fall, lead to uncontrolled bleeding as a child too. Luckily for him, his parents were educated and they put in efforts to learn more about the disease. They thus got in touch with the Kolkata Hemophilia Society. While they advised his family on the right treatment, it was expensive. Abhilash was bedridden many times when financial conditions did not permit them from buying serums. It was only in 1998, when AHF was introduced in India that he got access to treatment more easily. Injecting AHF regularly helped his condition improve gradually. With energy restored, he was finally able to lead a normal life. He went on to complete his post-graduation in Accountancy as well as get a PGDBA from Symbiosis, Pune.
In 2005, he started working at CMC, Vellore. However it was in 2009, when a truly new phase in his life began as a credit card executive in Bangalore. At that time, HFI’s Kolkata Chapter approached him to conduct camps and spread awareness about the condition. Being a patient himself, his own life’s experiences motivated him to quit his job and work fulltime for the cause. In addition to camps and awareness programs, he advises others like him on various problems. He shared with me in Hindi, “People get scared when they get diagnosed with Hemophilia. When they see a Hemophiliac like me working and leading a normal life, they become more convinced and confident of availing of treatment.” Being able to lead a normal life, despite a disorder, must be so liberating! I could sense that from my conversation with Abhilash as well as the other tales that I heard. I left HFI that day hoping that the organization continues its effort in spreading awareness about this disorder that most people, including myself (till my visit to HFI), know so little about.