NEW DELHI: The first-of-its-kind national guidelines for the treatment of Persons with Hemophilia (PwH) were launched on Thursday, which aim to provide cost-effective treatment and reduce mortality and morbidity.
The guidelines were prepared by Hemophilia and Health Collective of North (HHCN), a body of India’s leading healthcare professionals working in this area. It is in collaboration with the National Health Mission under the Union Health Ministry, and representatives from 16 states, including Kerala and Karnataka.
The guidelines suggest innovative products like Emicizumab, now available in India, to be prophylactic to prevent hemophilia, an inherited blood disorder that causes blood to clot less, increasing the risk of bleeding or bruising.
The stress is on the need for comprehensive care, including the significance of timely diagnosis, physiotherapy and multidisciplinary care for persons with hemophilia. Dr Naresh Gupta, chairperson of HHCN, said the new guidelines recommend adopting advanced care like non-factor replacements or prophylaxis care to tackle bleeding.
He said this would reduce bleeding-led disability among hemophilia patients to about one per cent or less and would significantly cut overall health expenditure and improve their quality of life. “Worldwide, countries are moving towards advanced non-replacement therapy or prophylaxis care because breakthrough bleeds remain an issue with the levels of protection offered by current FVIII concentrates,” said Dr Gupta, who is a medical consultant Maulana Azad Medical Colleges (MAMC) and advisor for Haemophilia, Lok Nayak Hospital.
In India, prophylaxis adoption is estimated at around 4 per cent. In contrast, in most other developing countries, it is over 20 per cent, and in developed countries, 80-90 per cent of patients are on prevention, said Gupta, the former Director Professor, MAMC.
India is home to the second largest population of patients living with Haemophilia, with an estimated 1,36,000 individuals grappling with hemophilia A. However, only around 21,000 are registered at present.
Nearly 80 per cent of hemophilia cases are undiagnosed in India as several hospitals and medical institutions lack screening capabilities for blood clotting, affecting the diagnosis of new cases.
“We believe these guidelines are not just a step forward; these may mean a leap towards a brighter future for haemophiliac treatment,” Dr Gupta said.
He said that without treatment, severe Haemophilia patients, primarily boys, may not survive through their teens, and that too with extreme dependency. This burdens the patient, his family, society and the healthcare infrastructure.
With the guidelines, these children would now grow up and lead a near-normal life, said Dr Kuldeep K Koul, former professor and head of department in government medical college and associated hospitals, Jammu, and president of HHCN.
According to Dr Varun Kaul, joint secretary of HHCN and Associate professor with the Department of Pediatrics at Guru Gobind Singh Government Medical College and Hospital, Faridkot, Punjab, correct diagnosis is need of the hour.
“Adopting early diagnosis and following up the new treatment guideline as recommended will help save many lives,” he added.
Dr Sunita Aggarwal, Director of Professor Maulana Azad Medical College, Delhi, and the secretary of HHCN said, comprehensive guidelines for Haemophilia management in the Indian context had been a much-awaited need.
Dr Ruby Khan, deputy director of the Madhya Pradesh Directorate of Health Services, says the new guidelines will help in providing much-needed treatment to more PwH but on the same budget.
“In India, the prevalence of Haemophilia necessitates a comprehensive approach to address the unique needs of those living with this condition. A shift in treatment paradigm is the need of the hour with proactive measures that elevate the standard of living for those impacted. The new guidelines are a crucial step in that direction. These guidelines will also empower policymakers to formulate state protocols and allocate funds judiciously,” says Premroop Alwa, President of the Hemophilia Federation of India.
The recommended guidelines also focus on ideal treatment policy, upgrading diagnostic pathology labs and protocol for selecting safe and appropriate clotting factor concentrates and other agents for optimal utilisation and resources available to achieve the treatment target for all – one country, one treatment.
Haemophilia manifests as bleeding, most frequently (80 per cent) involving the large joints like knees, ankles, elbows, hip and wrist, followed by deep bleeds affecting large body muscles. However, the most dangerous ones are bleeds affecting the head/brain, neck, chest cavity and abdominal and pelvic cavity.
Patients with this lifelong bleeding disorder experience frequent absenteeism from school and work, as physical activity is limited due to the extreme pain and discomfort associated with the Haemorrhagic episode, experts said.