The world is grappling with the challenges posed due to the ongoing pandemic. No country has been immune to the crisis, and so has been the case with India. The focus of healthcare professionals, resources, and infrastructure shifted quickly towards managing COVID-19 patients, resulting in less emphasis on non-covid patients such as Hemophilia patients. The low disease awareness amongst patients and lack of accessibility to specialists are critical factors that make the Haemophilia patients furthermore vulnerable.
Patients with Hemophilia are having a tough time accessing treatment as they are also in constant fear of contracting the coronavirus, being part of the vulnerable category. Though the factors required for the treatment are available at hospitals but due to the whole coronavirus situation, the patients fear going to the hospitals for their treatment. The critical need for early diagnosis, access to treatment, and physiotherapy is crucial for people with Hemophilia to lead a near-normal life
According to Dr Shubha Phadke, MD [Paediatrics], DM [Medical Genetics] and Professor & Head of Department of Medical Genetics, Sanjay Gandhi Postgraduate Institute of Medical Sciences, Lucknow, “The quality of care and treatment of Haemophilia in India has seen significant progress over the last few years. Under the present pandemic circumstances, the number of Hemophilia patients visiting hospital has reduced a bit. With the support of social workers and senior doctors we are providing services even during covid 19 times. Some serious bleeds are managed by indoor admissions. Many patients have learned self-infusions. But corona times reiterates the need for prophylaxis or at least on demand home therapy. I advise patients to save joints from bleeding and at the same time save yourself from corona.”
Dr Nita Radhakrishnan, Assistant Professor, Department of Pediatric Hematology Oncology, Super Speciality Pediatric Hospital and PG Teaching Institute, Noida, said “We have been working closely with Hemophilia patients and their families, helping them get proper treatment as due to covid-19 many centres providing treatment to Hemophilia patients in Delhi NCR are shut. I advise Hemophilia patients to be in touch with their treatment center so that all bleeding episodes can be managed judiciously and advice regarding preventing COVID infection also be provided. It is a difficult time which can be overcome with the cooperation of all the stakeholders.
According to Dr Radhika Kanakaratna, Assistant Professor – Pathologist, Nizams Institute of Medical Services, Hyderabad, “The ongoing pandemic has brought some changes in our management of haemophiliacs. The number of Hemophilia patients visiting hospital has significantly reduced and only 5-6 patients visit each month. The diagnosis centre is operational, but the routine prophylaxis is temporarily withheld in view of shortage of factor support. The Haemophiliacs are at same risk of covid-19 as the general population so it is advisable that patients take all the precautions and be more cautious about sustaining injuries as they are at the risk of complications especially bleeding risk.”
With easy access to factor replacement therapy and physiotherapy, Hemophilia patients – especially children – can fight this life-threatening blood disorder. The risk of death from lack of basic knowledge and untreated Hemophilia is very high. They also laid strong emphasis on Government support to ensure availability of diagnosis facility, factor replacement therapy and physiotherapy at Government centres.
What is Hemophilia?
Hemophilia is a hereditary genetic blood disorder that impairs the body’s ability to control blood clotting. People with this diseases do not bleed any faster than normal but can bleed for a longer time. Their blood does not have enough clotting factor. Clotting factor is a protein in blood that controls bleeding. A serious disorder, it puts the patient at risk of death due to excessive bleeding. Awareness about the blood disorder and its management can make accessibility of appropriate treatment a reality for patients and save their lives.
Hemophilia is usually of two types first one is called Hemophilia A and other one is Hemophilia B. The most common type of Hemophilia is called Hemophilia A. This means the person does not have enough clotting factor VIII (factor eight). Hemophilia B is less common. A person with Hemophilia B does not have enough factor IX (factor nine). The result is the same for people with Hemophilia A and B; that is, they bleed for a longer time than normal.
The signs of Hemophilia A and B are the same: big bruises, prolonged bleeding after getting a cut, removing a tooth, or having surgery; spontaneous bleeding (sudden bleeding inside the body for no clear reason), bleeding into muscles and joints. Bleeding into a joint or muscle causes swelling, pain and stiffness in the joints, and difficulty using a joint or muscle.
Treatment for Hemophilia today is very effective. The missing clotting factor is injected into the bloodstream using a needle. Bleeding stops when enough clotting factor reaches the spot that is bleeding. Bleeding should be treated as quickly as possible. Quick treatment will help reduce pain and damage to the joints, muscles, and organs. If bleeding is treated quickly, less blood product is needed to stop the bleeding.
While Hemophilia cannot be cured, patients can lead a near normal life through prophylaxis treatment. Prophylaxis, essentially replacement of clotting factor on a regular basis, helps the blood to clot normally in case of an injury or bleed. The treatment prevents bleeding and joint destruction, helping children with Hemophilia be more active, attend school, go for outdoor games and above all, follow a routine life which every child wants to live.