Have you ever met patient of Hemophilia? Have you ever met a young boy in the arms of his father, holding his swollen knee in pain, as he waits for an injection of a factor concentrate that will stop the bleeding? You should see the despair in the father’s eyes, who knows his son is destined for a lifelong battle with a bleeding disorder for which there is no cure. But you should also see the glow in the young boy’s eyes, who knows he will be fine once he gets the Factor. He can’t wait to get back to playing cricket!
Disease does not discriminate between the rich and poor, but in a country like ours, it is not hard to imagine that most patients of Hemophilia cannot afford long term care. According to some estimates, more than 75% of Hemophilia patients in our country do not receive the appropriate care for their illness.
There are, however, a few bright spots in this otherwise gloomy picture. While many patients remain unable to access adequate care, there are also a number of patients who are now getting reasonable Hemophilia care at no cost. Hemophilia Patients Welfare Society of Pakistan is a charitable organization which is responsible for this change for the better. The Society was founded almost 20 years ago by a group of doctors who were caring for Hemophilia patients. Over the years the HPWS has worked to raise awareness about Hemophilia, and directly assist in the care and management of Hemophilia patients.
Today the HPWS has more than 400 Hemophilia patients enrolled in its care program. These patients visit the Society office for free medical consultation, diagnostic and monitoring work up and management through injection of Factor concentrates.
Hemophilia care in Pakistan does not begin and end with my lab or with the HPWS. There are many, many doctors and charitable organizations working to serve Hemophilia patients. For instance the fine people at the National Institute of Blood Disorders in Karachi are doing some excellent research on Hemophilia and Thalassemia, and serve a large number of Hemophilia patients.
World Hemophilia Day is upon us. It is a reason to note the long way we have to go to serve all Hemophilia patients in Pakistan. It is also a day to celebrate the many thousands of patients of hemophilia in Pakistan and across the world, who refuse to let their illness define their lives.