“Tell me should mothers of hemophilia kids like me run for “rashan” being distributed by philanthropists, non government organizations (NGOs) or beg for treatment to save lives of our kids. Why there is no treatment for our kids in government hospitals like other diseases? Our kids are losing their joints and dying in front of us and we are so unfortunate mothers who cannot save them just because of not having so much money for treatment”.
This was a miserable story shared by Mrs. Qurat-ul-Ain, mother of a five year old only son master Ayan who is suffering from hemophilia-A, a blooding disorder caused by deficiency of clotting factor 8 and 9. He is now also suffering from inhibitor antibody complication leading his body resistant to dry factor injection normally administered to hemophilia patients to stop their internal or external bleeding.
She was sharing her dilemma with journalists during a press briefing organized by the Hemophilia Welfare Society Karachi (HWSK) at its treatment centre located in Nazimabad locality of Karachi. She was accompanied by her ailing son master Ayan and husband Mr. Muhammad Saqib, a salesman.
Mr. Raheel Ahmed, a hemophilia patient himself, founder and President of HWSK, Mr. Shahid Dawood Secretary General, Mr. Fakhar Alam Zaidi, founder and Treasurer and Dr. Mushtaque Memon a senior medical officer at this treatment centre also addressed the press briefing.
Master Ayan’s mother narrated the story that; “one morning he was awoke with severe internal bleeding in his elbow joint one and a half year ago, and blood pressure was so high that it started travelling towards his heart and lungs. With the timely help from HWSK and Indus Hospital, Ayan survived but his treatment could not be continued due to non availability of funds for purchase of dry factor concentrate. Due to which he is still suffering and his elbow has developed stiffness,” she told.
“During this treatment, his body has developed resistance against normal dry factor injection which is used for hemophilia patients to stop their bleed. Now his bleeding can only be stopped with other bypassing agent injection and cost of such one injection is Rs 71,000/mg. While doctors have suggested one mg dose in every eight hours for seven days which will cost Rs 1,491,000 (1.491 million) initially and this therapy can be extended further,” helpless mother told.
Dr. Mushtaq Memon told that hemophilia is a hereditary bleeding disorder, in which patient does not have natural clotting factor in blood by birth. “Hemophilia kids suffer from internal or external repeated bleeding in routine life and this bleeding cannot be stopped until anti hemophilia injection is not administered to them. This bleed can happen due to any minor cut, bruising or without any reason internally. Without adequate treatment many hemophiliacs die or are physically deformed before they reach adulthood”, he told.
Mr. Raheel Ahmed told that; “there were 20,000 patients of hemophilia in Pakistan including more than 6000 from Sindh province alone. We have registered over 700 hemophilia patients so far and helping them in treatment by most needed dry factor injections and plasma as secondary option to save their lives,” he said.
“This injection is not manufactured in Pakistan nor does government import it for patients. Cost of one such normal dry factor injection is over Rs 10,000, while the cost of by-passing agent injection is over Rs 71,000/mg if patient body develops antibody against earlier one. A hemophilia patient requires 10 to 12 normal anti hemophilia injections in a month like three times meal”, he explained.
President HWSK said that; “it was responsibility of government to provide health facilities to patients suffering from hemophilia and other bleeding disorders too but unfortunately it is not spending a single penny for such patients. No government hospital in the country has dedicated treatment facilities for hemophilia patients nor they provide anti hemophilia injections at-least to save lives of such kids,” he lamented.
“It is very welcoming that we now have regional blood banks and we should use them to collect plasma from registered blood banks and get anti hemophilia injections by sending it to manufacturers present abroad like Iran has done. In this way we will get the most needed state of the art treatment by getting anti hemophilia injections in very lower cost. For this, hemophilia welfare society is always ready to share a proposal having such patients data and any other assistance as required,” he offered.
Mr. Raheel Ahmed urged federal and provincial governments, NGOs and philanthropists to help hemophilia patients survive.