Patient Awareness Camp organized by Hemophilia Society, Mumbai Chapter to mark the occasion of World Hemophilia Day

Patient Awareness Camp organized by Hemophilia Society, Mumbai Chapter

to mark the occasion of World Hemophilia Day

“Haemophilia Patients demand free treatment and better infrastructure”

Mumbai, April 22, 2013:  To mark the occasion of World Hemophilia Day (April 17, 2013), Hemophilia Society, Mumbai Chapter organized a patient awareness camp and discussion session for the patients on Hemophilia and its management. The hemophilic patients were given training for theraband exercises under the esteemed guidance and supervision of Dr. Jayashri Kale, Professor and Head Occupational Therapy. Over 400 people attended the awareness camp held at KEM Hospital, Mumbai.

This patient awareness activity organized by the Hemophilia Society, Mumbai Chapter aimed to raise awareness about the Hemophilia disease, its diagnosis and available treatments providing them total care through continuous education, training and rehabilitation. This was followed by the inauguration of the first wellness centre for the hemophiliac patients at KEM Hospital by Dr. Ankita Kar & Dr. Supriya Mahabaleshwar from the Interdisciplinary school of Health Science, Pune University.

Of the existing 11,200 haemophiliacs in Maharashtra, only 2,500 exist on the registry of the State Blood Council. Discussions and deliberation held at the awareness camp enumerated there is a need for more awareness about the hemophilia disease. Lack of awareness about this genetic disorder leads to several complications among patients, not just in rural areas but in cities as well. Despite the efforts have been made by the state government in making the availability of replacement therapy of deficient coagulation factor (VIII or IX or Inhibitors) to the patients most patients do not have the money to buy factors. The major challenge 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. This awareness camp made a fervent appeal to the government to take notice of the hemophilia patients who are in dire need and require support. It urged to set up more day care centres with proper infrastructure and facilities to mitigate the sufferings of this lot.

Furthermore under the Rajiv Gandhi Jeevadayi Arogya Yojana, the scheme brought into effect by the state government since July last year  covers over 900 diseases, with Hemophilia being one the key diseases demanded the availability of free diagnosis, free treatment and free medicines to hemophilia patients. The current data in the region shows that there is need setting up better infrastructure and day care centers that will offer proper care and rehabilitation to these patients.

Says Ms. Indira Nair, President, Hemophilia Society, Mumbai Chapter “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. We are hopeful 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.

We are hopeful that keeping in mind the need of Hemophilia patients in the state, government will soon take some action to address the gaps she further added.

Members of the group and society, Hemophilia patients, their families and friends attended the patient awareness camp held at KEM Hospital, Mumbai today. This was followed by counseling sessions and exercise sessions with Therabands under the supervision of Dr. Jayashri Kale, Professor and Head Occupational Therapy, KEM Hospital, Mumbai

Dr.Jayashri as a part of the medical team has been educating the parents of PWH on the psycho-social aspects as well creating awareness and training workshops in most of the parts of India to the treating doctors, key persons and parent-patient groups. This awareness camp too was focused on Hemophilia care through continuous supervision of all the medical and psychosocial aspects of bleeding disorders so that a Hemophilia patient can live as normally as any one of us.

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 therapy of 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.

On the same platform, success of the scholarship program for Hemophilia patients called “ I Believe I can Fly” was enumerated. The program provides education scholarship for three years for 20 students across India. This initiative is supporting positive change for people with hemophilia and assisting people living with bleeding disorders to achieve and maintain access to care

A step – by – step approach is essential to manage Hemophilia focusing mainly on spreading awareness, establishing basic laboratories, training technical personnel and most importantly making the Factor VIII and Factor IX concentrates available. This has been passionately advocated by needy patients and advocacy groups across India.

About World Hemophilia Day 2013

Every year on April 17, World Hemophilia Day is celebrated around the world in order to increase awareness of hemophilia. World Hemophilia Day was started in 1989 and the World Federation of Hemophilia (WFH) chose April 17 in honor of WFH founder Frank Schnabel, who was born on that day. On April 17, help us spread the message “Together we can Close the Gap” around the world. Together, we can work towards a day when treatment will be available for all globally. Join the international bleeding disorders community on April 17 to mark World Hemophilia Day.