MUMBAI: This World Hemophilia Day, the city's Hemophilia Society, brought focus on how the government needs to do much more in terms of awareness, diagnosis and management of the disease. A programme to discuss these issues was organized at the Parel's KEM Hospital, where over 400 patients participated.
Out of 11,200 haemophiliacs in the state, only 2,500 feature in the registry of the State Blood Council. And even though, the Rajiv Gandhi Jeevandayi Arogya Yojana that covers over 900 diseases, includes Hemophilia in the list, a clear demand for better infrastructure and day care centers for proper care and rehabilitation, was echoed by patients.
President of Mumbai's Hemophilia Society Indira Nair said, "Not only we want to raise the awareness about the Hemophilia disease among physicians and the public, but also to provide patients who suffer from Hemophilia a total care. We are thankful to the government for making the availability of factor VIII and IX concentrates as the safest treatment option for patients with hemophilia." She said that the government will continue to support with the availability of free treatment to patients with hemophilia at all the government hospitals.
"Improving Infrastructure and establishing hemophilia treatment centre's can be one step to ensure these patients get the best care. The next step would be a creating more awareness about the disease and providing comprehensive psycho-social care mechanism for the PWH in the state," said Nair.
However, one of the major challenges for these chapters is treating poor as most of the patients are from poorest of poor background and more than 80% of patients suffering from hemophilia are undiagnosed. A wellness centre for the hemophiliac patients, the first of its kind in the city, was started at the KEM Hospital.
Speaking on the occasion, Dr Jayashri Kale, professor and head Occupational Therapy, KEM Hospital said "Hemophilia is the oldest known uncommon genetic bleeding disorder that disrupts the blood clotting process. It is caused by the absence of a certain blood clotting factor in the blood. Prolonged bleeding may occur after sustaining injury or can happen spontaneously. A hemophilic has to be injected with the appropriate clotting factor on a prophylactic or demand basis to help control a bleeding episode, and each injection costs Rs 9,000. Replacement therapyof a deficient coagulation of factor VIII and IX are the safest available treatment options. We have been demanding free diagnosis and free treatment for patients with hemophilia at Government hospitals and today we have been successful in launching the first wellness centre for these patients. Thera-band exercises which are safe and effective, especially for home maintenance in the PWH are being incorporated in the rehabilitation regime.
