Aheli Moitra
This week, The Morung Express highlighted the plight of a Hemophilia patient in Nagaland. Hemophilia is an inherited bleeding disorder. Due to the absence of a blood clotting factor, patients of Hemophilia bleed longer than others after an injury, injections, operations or tooth extractions. They may bleed internally, and in the joints - knees, ankles, and elbows. This can damage the joints and internal bleeding (head, abdomen) may be life threatening.
According the World Federation of Hemophilia (Annual Global Survey), almost 50 per cent of the world's Hemophilia population lives in India and over 70 per cent of People with Hemophilia do not have adequate knowledge or access to treatment. The risk of death from the lack of basic knowledge and untreated Hemophilia is very high.
With help and support, however, patients suffering from the disorder can lead a fairly decent life. This support comes in the form of survivor networks and medical treatment. Medical attention for Hemophilia patients can range from the transfusion of the required blood component (there are various types of Hemophilia) to rest to having a job that allows them minimal physical activity yet an opportunity to provide for themselves and their families.
Most countries across the world host Hemophilia networks—consisted of patients, physicians, nurses, therapists and other professionals—that assist in delivering care to those in need of it. In Nagaland, Hemophilia patients do not have an established network though the Nagaland State Disability Forum and the Hemophilia Federation (India) reached out to the patient whose story was highlighted by this newspaper.
It is one thing not to have a Hemophilia network—that can help only when patients know their disorder—and another to have a brittle healthcare system. Keeping aside the overall morose condition of state-run healthcare, Nagaland has only three blood banks, one each in Dimapur, Kohima and Mokokchung district headquarters. The badly connected districts of eastern Nagaland have blood storage facilities but not a single blood bank. This exacerbates the trauma of Hemophilia patients (and others) who, when treated, often have to be unsafely transfused with huge amounts of whole blood or have to travel spectacular distances on the state’s lethal roads to access the medical attention they need.
This is outrageous and simply cannot be allowed to go on.
The Rights of Person with Disabilities Act, 2016, was notified in Nagaland State on October 3. The Act, according to a rights activist, aims to strengthen the resilience of people with disabilities by providing full access to justice, healthcare, infrastructure, accessible networks, lifelong learning and sustainable economic growth through employment. This is the state’s promise of a good life for People living with Disabilities, and it must be kept. Moreover, Hemophilia and other bleeding disorders must be classified as a disability with every attempt made by the state to alleviate the suffering of people living with this disability, and others.
Thoughts and comments can be shared at moitramail@yahoo.com
