Mahalingam, a wonder-boy who’s conquered academics and proved his mettle by getting through GATE and into MTech (Computer Science) is fighting a life-long battle, with a condition called Haemophilia (Here’s more about the disease). Being severely haemophilic with less than 1% of factor VIII, he has been living a tough life being susceptible to internal bleeding into joints and other internal organs. He has to be very careful so as to not hurt himself physically in anyway to avoid bleeding. He needs factor VIII or Anti haemophilic infusions on a regular basis. Each infusion costs in the range of Rs 3000-Rs 5000.
Mahalingam is only one among the one lakh people affected with Hemophilia with an estimated prevalence rate of 1:100,00. Around 14000 such people are registered with the Haemophilia Federation India, an organization working for hemophiliacs through a network of 72 chapters spread across the country.
The biggest hurdle for haemophiliacs is the cost of the treatment. In mild and moderate hemophilia, patients require infusion of factor VIII concentrate or Anti Haemophilic factor (to replace the clotting factor VIII which is missing in Type A haemophilia). In the case of severe haemophilia, the patients require infusions almost on a daily basis. In recent times, recombinates are being used more frequently. This treatment is extremely expensive as each unit of recombinates cost around ten rupees. A 10 kg child with intracranial bleed requires a dose after every eight hours. Each dose costs around Rs 5000. According to a study, almost 75% of Indians suffering from the disease cannot afford the treatment costs leading them into a life of total disability. To add to the tragedy, people rendered disabled due to hemophilia are not included under the Persons with Disability Act 1995 and the National Health Mission thus have no benefits available to them.
As if the challenge of living with Hemophilia wasn’t enough, most patients are unable to earn a proper livelihood. Schools usually shy away from admitting hemophiliac children thus keeping them away from good education and right to livelihood. As adults, employers are reluctant to give them jobs.
For all such patients, the Hemophilia Federation India is a fairy godmother. They provide the expensive Anti hemophiliac factor free of cost to the poor, arrange for surgeries when needed. They organize open clinics where along with medical help they provide psycho-social support, genetic counseling, prenatal testing, physiotherapy and lots more. They have been true to their vision – ‘Hemophilia without disability, children without pain’.
In fact, India’s come a long way in dealing with the disease with the Hemophilia day care centre at Maulana Azad Medical College and Lok Nayak Jai Prakash hospital being declared the best facility for treatment of the disease across the world by the World Federation of Hemophilia. They treat around 35 patients with Hemophilia on a daily basis.
Do your good deed of the day – If you know someone who’s struggling with hemophilia, make them aware of the existence of the Hemophilia Federation India. If you’re among the lucky lot not afflicted with the disease – do spread the awareness, make a contribution, volunteer at their events. People with Hemophilia face huge challenges everyday and it’s only right that you help them live a life of dignity. Support them, support their cause, spread the word – it’s worth it!
First Published: Apr 17, 2012 at 10:55 AM