Hemophilia is a genetic and life-threatening bleeding disorder. Even with a minor injury or cut, in hemophilia patients' blood does not clot normally due to the absence of clotting proteins called Factors. If not taken care, recurrent and prolonged bleeding into joints and muscles can lead to permanent disability and bleeding from the sensitive organs can lead even to death.
The only possible treatment is infusion of life saving drugs called Anti-Hemophilic Factors (AHF), which is costly and neither produced nor readily available in India. (One unit of Factor costs around Rs. 10-12 and at any bleeding episode a person needs 500 to 2,000 IUs in one shot which amounts to an expenditure of Rs. 5,000 to Rs. 20,000 on an average).
‘The Hemophilia Federation India (HFI) has laid a proposal to the Central Government for proper budgeting and provisions to initiate Anti - Hemophilia Factor (HFI) under NACO.’
Hemophilia Federation India (HFI) organized an event to commemorate its Founder's Day on November 24 to spread awareness about the disease and its consequences and also measures that have been taken into consideration to extend a helping hand to the patients suffering from this dreadful disease.
In 2016, on its founder's day, HFI focused on to lay a proposal to the Central Government for proper budgeting and provisions to initiate Anti - Hemophilia Factor (HFI) under NACO. The federation has also forwarded the desired proposal to National Health Mission of India to help people cure this communicable disease across the country by setting up centers in different cities.
Kamlesh Kumar Pandey, Chief Commissioner for Person Disability addressed, "Hemophilia is such a disease that can be managed but cannot be removed from inside. It creates hindrance for the patients to live their lives on their own terms. Hemophilia is such a disease that slowly takes a person towards disability and the ministry is trying to get the bill approved in order set up treatment centers across India in different districts to treat the cause."
"As per the disability Act, there are seven diseases categorized under it but soon there be 18 such categories including Hemophilia, cancer and other such related diseases. Administration is taking steps to get this disability recognized in order to the patients on medical terms. The bill has been forwarded to the PMO and will be soon approved by the Rajya Sabha to declare it as a disability in the Disability Act in India," he added, at Indian Habitat Center here.
Dr. G.N. Singh, Drug Controller General of India (DCGI) threw light saying, "Health Ministry of India is considering this disease a disability and appreciates the vision of HFI society. We under the plight, consequences and after effects or genetic disorders a patient has to undergo while fighting the battle with Hemophilia. I feel so grateful to Late Ashok Verma for lying down this foundation ages ago when the disease was not that known. He started this movement when there were no funds and optimum resources available to facilitate the actions."
"People often complained about the expired and tampered medicines or cosmetics from overseas that have adversely affected their health but with time India has shown great improvement in the field of science and medicine. It proved to be catalyst in getting affiliations from UN -WHO. We are proposing for public sector health care units with proper arrangements and better quality medicine chains. To allocate funds, helping the victims cure out in better means all across India. We will make sure that all the grievances of the patients are being taken into account and Anti Hemophilia Factor facilities are provided," Singh continued.
According to Deputy Commissioner National Urban Health Mission Basab Gupta, "We have laid a proposal to FMR to support the fight against Hemophilia and allocation of funds for such specific purposes. We are looking forward to formulate standard protocol and set proper guidelines at National level disseminating the motive of the cause in states and ask for immediate funds for the same."
This year, the immediate focus was on the custom clearances of donated Anti Hemophilia Factor (AHF) aid from World Federation of Hemophilia (WFH) which always gets held up due to excessive bureaucratic hurdles. HFI requested for Hemophilia budget allocation in NHM, Hemophilia Treatment Center in every state with testing facility in every district and a standard purchase protocol for AHF procurement of international standard.
Prominent doctors, hematologists, physiotherapists and hemophilia caregivers from various medical colleges & hospitals of the country participated in the workshops, who were felicitated for their noble contribution in the respective field. They interacted with the audience comprising mainly of Hemophilia patients about their grievances and myths about the disease.