NEW DELHI: Kerala and Jammu and Kashmir are the two states in the country that are leading in providing a better quality of life for persons with hemophilia (PwH), an inherited blood disorder, with comprehensive care and treatment.
The implementation of prophylactic treatment, which prevents the disease from occurring for persons with hemophilia (PwH) in the two states, has been a game-changer, so much so that some other states like Karnataka, Telangana, Assam, Jharkhand, and Goa are now trying to replicate the success story.
The new treatment not only promises a better quality of life without the fear of disability and subsequent mortality but is hugely cost-effective, too.
Veena George, Minister for Health and Woman and Child Development, Kerala, said, “We are committed to providing comprehensive care for hemophilia patients, ensuring they receive international-standard treatment and support.”
“We aim to enhance their quality of life and make innovative treatments accessible. Aligning with this mission, Kerala has taken pioneering steps,” she told this paper.
Hemophilia is a rare bleeding disorder that primarily affects men, and the blood does not clot properly. This leads to problems with bleeding too much after an injury or surgery. The bleeding can even start inside one’s body, such as joints, muscles, and organs, like the brain, which can be life-threatening. Children are the worst affected.
In India, 28,000 people are registered with the National Hemophilia Registry, including those with Hemophilia A, Hemophilia B, and other inherited bleeding disorders. Before prophylactic treatment was introduced, people with hemophilia would receive government treatment only when they bleed, leading to inefficient care and compromised quality of life.
“We were the first state in India to provide prophylaxis care for patients under 18 years of age, reducing the treatment burden on patients and caregivers such as frequent hospital visits, caregiver job loss, etc., typically associated with on-demand therapy,” she said.
She said the state decentralised treatment from medical colleges to district and taluka-level hospitals, which made it more accessible for PwH.
“Furthermore, we provide select patients with innovative therapies like Emicizumab.” Emicizumab is a medication used to treat hemophilia A.
Kerala has 2,094 hemophilia patients registered in their program.
Similarly, J&K faced high bleeding rates and school absenteeism due to insufficient diagnostic facilities and overwhelming daycare visits.
Dr Sheikh Bilal Ahmad, Professor and HOD of Pathology, Transfusion Medicine and Hemophilia Daycare, Government Medical College (GMC) and Shri Maharaja Hari Singh Hospital (SMHS), Srinagar, said after the initiation of emicizumab prophylactic treatment since 2021, they saw a significant improvement in healthcare system costs, and in the quality of life of Hemophilia A patients.
He said the support of the central and state governments and the National Health Mission (NHM) had ensured zero loss of hemophiliac life in Kashmir in the past three years.
Dr Anupama Pattiyeri, Executive Committee Member, Hemophilia Federation (India), said a significant portion of the Indian population is yet to be diagnosed and identified.
“Only 15% of PWH is currently identified in India. The incidence rate is 1 in 5,000 for hemophilia,” said Pattiyeri, whose husband is a person with severe hemophilia A with inhibitors and was under clinical trial for the medicine and is now under Kerala’s state program.
Suffering from severe hemophilia A with inhibitors positive, Pulijala Hemanth Kumar, Communication Chairman, Hemophilia Federation (India), said before the treatment, he used to experience frequent bleeds, leaving him bedridden for almost three weeks each month.
He was among the first to participate when emicizumab trials began in India in 2018. “My life has changed drastically. Now, I can travel anywhere in the world,” said Hyderabad-based Kumar.
He strongly recommended that the central government make the drug available to frequent bleeders nationwide.
“This would not only improve patient outcomes but also reduce the financial burden on the government,” he said, adding that a patient who needs hospitalisation at least 6-10 times a year may cost the government Rs.1 crore to 1.2 crores towards his treatment, but now with the new treatment, which some states have initiated on their own, the cost has decreased by 80%.
Dr Rahul UR, State Nodal Officer of Child Health and Rare Diseases in the Kerala government, said children, especially young ones, are more prone to trauma and bleeding, sometimes severe enough to cause mortality.
“Previously, improper management and lack of prompt treatment led to joint bleeds and joint damage, causing disabilities. This has significantly come down. Additionally, school absenteeism has decreased since joint bleeds often led to pain and difficulty attending school,” he said.
Over 300 children are receiving prophylaxis at daycare centers in Kerala, which involves administering the factors twice weekly.
Syed Majid Qadiri, President of the Haemophilia Society of Kashmir, said, “Dealing with Hemophilia A is not easy. Frequent bleeds, accompanied by frequent visits to the treatment center, loss of productivity, and the fear of permanent disability shroud the life of a patient living with hemophilia A.”
But now, he said, they can live life to the fullest without the impending fear of bleeds. “Many hemophilia A children in Kashmir are now attending school without any interruption and actively participating in sports tournaments, and their parents are allowing them to do so without any worry,” he added.
