The Government needs to do more to reach out to hemophilia patients in the country. Quality treatment is not only expensive but also not easily accessible. Those who can afford go abroad, others are left to their fate
What was once a personal pain for Rohtak businessman Ashok B Verma, a hemophilia patient, his empathy transformed it into a community initiative that has changed the lives of many like him for the better.
It was sometime during 1979, Ashok B Verma had severe bleeding in his leg, and it was untreatable in India. He had to fly to Italy where professor PM Mannucci, a prominent hematologist, treated him free of cost and suggested him to reach out to people with hemophilia (PwH), in need in India.
Ashok remembered his saviour’s words. On November 24, 1983, the Hemophilia Federation India (HFI) was set up in Delhi in the presence of Prof Mannucci and Rev Allen Tanner, then chairman of World Federation of Hemophilia, and other PWH and family members from India.
Thanks to Ashok B Verma’s vision, so much has changed for the younger generations of PwH. Still, the insurmountable struggles of living with the disease in a developing country such as India, having no adequate treatment, or expensive care, continue to affect us in many ways.
For those who are not familiar with hemophilia, it is a hereditary bleeding disorder that prevents blood from clotting properly. Being a genetic disorder, it lasts a whole lifetime. People with hemophilia lack a protein in blood that controls bleeding.
There are more than 18,000 registered PwH across the country, but this number is only the tip of the iceberg. Given the incidence rate of one in 10,000 male births, more than one lakh patients are estimated to be suffering from different types of hemophilia across the country, according to the World Federation of Hemophilia. This figure by itself means that more people are suffering because they have not been diagnosed properly and effectively.
Even those of us who have been diagnosed, are still suffering because of inadequate treatment. Only effective access to treatment will ensure pain-free and productive lives to us, especially our younger generation.
Hemophilia patients get treatment on demand from most States, but lately, there has been a scarcity of anti-hemophilic factor (AHF) concentrates across the country. This becomes very difficult for most patients, particularly coming from the poor strata, as they are dependent on Government support.
One of the long-term solutions that has been proposed is for the Government to establish a hemophilia programme under the National Health Mission. There has to be a comprehensive programme to address the needs of hemophilia patients and the hemophilia community in general. The Union Government has to look at it with a more holistic approach and view its advantages in the longer term vis-à-vis a piecemeal approach.
For example, the inclusion of hemophilia in the Disability Bill, which is yet to be tabled in Parliament, is of paramount importance to hemophilia patients. Its endorsement by Parliament can address many issues, such as discrimination at the workplace and lack of benefits for those suffering from disabilities.Other important programmes that we, in the HFI, are pursuing, include sensitisation with the National AIDS Control Organisation (NACO) to come up with a scheme to support hemophilia patients with clotting factor concentrates, following HIV infection of many patients who used blood products.
Local manufacturers need to be engaged to ensure that they develop factor concentrates locally that strictly adhere to international safety standards and protocols, which is again a vision of Make in India.
Alongside with ensuring ample supply and safety of factor concentrates, should be the establishment of Hemophilia Treatment Centres (HTCs) and Coagulation Laboratories in Government-run medical colleges in each district equipped to identify new children/persons with hemophilia. These diagnostic facilities will also help many other medical and surgical patients as well as reduce morbidity and mortality related to bleeding after child-birth in these hospitals. The HTCs must have the capability of carrier detection and pre-natal diagnosis of women who have a history of hemophilia in their families.
Moreover, we would like to see the institutionalisation of prophylaxis treatment, especially among children 15 years old and below. Prophylaxis is the preventive infusion of factor concentrates to reduce the risk of bleeding and prevent joint damage.
Many adult hemophilia patients experience permanent damage in joints because of lack of treatment. Giving prophylaxis treatment to children will prevent the new generation of hemophilia patients from having such permanent damage. But even those with permanent joint damage have hope. Under the Central Government Hospital Scheme, some hemophiliacs who have been bedridden from joint damage for 15-16 years, received corrective surgeries and have now recovered completely. This scheme should be made available all over the country.
(The writer is vice president, development, Hemophilia Federation-India)