Mr. Vijay Kaul who has been in the services of Hemophilia patients. Taking care and providing them maximum facility / treatment from different reputed Hospitals. He, recently spoke to S.S.DOGRA-Managing Editor, DwarkaParichay.com. Excerpts:
Q..What is the mission of your organization? What do you mean by SHC?
“Nobody should die or become disabled when the treatment is available”. SHC stands for Society for Hemophilia Care- an organization working for rights of people with bleeding & associated disorders. Our constitution provides every Indian citizen the “right to life”. But it is denied day in and day out. Under-privileged people die because they cannot afford the cost of treatment and are not aware of their rights. The budgetary resources provided every year by our central govt. and the state govts. should be utilized equitably. No one can be neglected and every citizen should be provided affordable treatment.
SHC India works towards this and advocates for the health needs of the under privileged.
Q..Who is the founder of the society? What was the force (Inspiration) behind him/her?
SHC India is a dream come true for the people affected with hemophilia and is founded by a team full of passion, commitment and concern for the humanity. They represent all parts of our country. The execution of our plans is done by me. To know more about people behind SHC India please visit our website:
Q..What is the strength of the society?
SHC India executes all its programmes and plans in complete transparency and professional manner. It sees the contributions made by its supporters as an investment where for they are entitled for Returns in the form of “satisfaction, feel good factor and their support having gone to the most needy”. SHC India is accountable to all of them.
Q..Whether your society is registered body? What is working area? Name them.
SHC India is registered under Delhi and Govt. of India Acts including Income tax Act and F.C.R. Act.
Q..When you joined this organization?
From day 1.
Q..What is hemophilia? What are the symptoms of the disease?
Hemophilia is a lifelong bleeding disorder that prevents blood from clotting properly. People with hemophilia do not have a certain protein in blood that controls bleeding. Symptoms include internal uncontrolled bleeds mostly into joints, reddishness, Sudden bleeding inside the body for no clear reason; Prolonged bleeding after a cut, tooth removal, surgery, or an accident. The treatment is available and the affected person can live a normal life but it is very expensive.
Q.How many patients are there in India? Name the most affected states?
As per WHO’s prevalence rate there are around 1 lac people affected in India, 1 in every 10,000 has this genetic disorder and double of this number in their mothers, sisters, daughters carry this gene.
Q.What is the treatment procedure & what is the role of the society to overcome it?
Hemophilia is treated by making good the missing clotting factor in the blood. This is done by injecting a product that contains the needed factor into a vein. Bleeding stops when enough clotting factor reaches the affected area. With proper treatment, people with hemophilia live relatively normal lives. But unfortunately in India it is very expensive. and this is one area where SHC India is working so that everybody gets the free treatment. Our organization also works in making people aware about this condition. Advocacy and lobbying with government is the priority area on which we are working.
Q.How many members(patients) are there in the society? How the SHC is helping them?
We have about 2000 member families with us and SHC India is helping members in all the possible ways with whatever the limited resources we have for the treatment, education, psychological support and economic rehabilitation.
Q.Are you doing any awareness campaign?
Yes, on a regular basis. On 13th & 14th March, 2008 we are organizing a National Hemophilia Conference at AIIMS where the medical experts, hospitals,doctors, nurses, patients, their family members as well as the pharmaceutical companies and the media personnel will be participating. It will be a two day seminar cum workshop for updating the medical community about the recent advances in treatment.
Q.What are the regular activities of SHC in Dwarka?
We work on all India basis. In Dwarka we regularly organize awareness programs & health camps in various institutions, facilitate participation in similar events, Mini Marathons and fund raising activities like Charity dinner.
Q.Whether SHC is getting any aid from the Government or any other foreign aid?
Yes, we receive a lot of non-monetary support from our Governments. We are also working on some programmes with international collaborations.
Q.What is your approach towards mass?
Our approach is that the society as a whole should have the awareness and concern about such bleeding disorder and its related issues. People are solicited to share their expertise and skills with SHC India on voluntary basis. We are very thankful to all those have been contributing selflessly.
Q.Pls. few individual/ organizations etc. who are really supporting SHC particularly in Dwarka?
As already said we are happy for the support we have been getting from hundreds of volunteers, institutions, govt. agencies and national & international corporate houses. More and more Dwarkaites are taking keen interest in our cause.