In Pakistan there are 18,000 patients with hemophilia by statistical projection. Registration of patients to various treatment facilities of hemophilia care is less then 10%. The reason being lack of awareness, illiteracy and poverty Poor acceptability of disability and social taboos are additional influences which creates this “Gap” of access to diagnosis and treatment of Hemophilia. An estimated I in 1000 women and men has a bleeding disorder, in in the world 75% still receive very inadequate treatment or no treatment at all. What will it take to close the Gap?
“On World Hemophilia Day we want to inspire” people to help close the Gap and to improve access ability and quality of care so that treatment for all becomes realty. This is by holding of events and addressing the media for spreading the word. It is important to note that good treatment is already established, at the Hemophilia Treatment Center of Lahore, Lahore, it needs to be supported and protected. Ironically, the Govt, of Pakistan does not have hemophilia care, in its list of priorities. The Pakistan Hemophilia Patients Welfare Society [PHPWS] struggling with its own resources to maintain the hemophilia care for its 500 registered patients. The Chughtais Lahore Lab [CLL] offers immense financial and technical support as a part of its social responsibility for the hemophilia center. This includes donated space for the treatment center, diagnostic and therapeutic modalities and expertise of the voluntary Medical Advisor Advisory Board of Hematology.
This close collaboration between a non for profit organization i.e PHPWS and CLL, has created a venture, where access to diagnoses and treatment has become available to people with bleeding disorders and the “Gap has been narrowed”. On World Hemophilia Day 17th April 2012,April 2012, a family day out was organized at an “Oasis Golf & Aqua Resort”. It was a fun day and helped the families and patients with hemophilia; have an enjoyable day and get together¸ to share their quality of life issues amongst themselves & with the advisory in pleasant surroundings. The media covered us with point of view of creating awareness and an advocacy opportunity.