Govt Criticized Over Ignoring Hemophilia Patients
Mukhtar Ahmed (Kashmir Images)
Srinagar: Experts on Monday criticized the state government for making the lives of Haemophilia patients miserable. They alleged that instead of working on their specifications and recommendations, government is backing some charlatans and unscrupulous elements.
As a result of this grave injustice with the patient’s lives, the experts further alleged that such a lackadaisical approach on government part has led to the thinning of pure and quality medicines from the market and thriving of “substandard” medications. These accusations came to the fore during a seminar-cum awareness camp and an interactive session for the patients on the occasion of World Hemophilia Day (April 17), organized by Society for Hemophilia Care in a local hotel here.
The experts lamented that how the state government’s pathetic attitude towards the Hemophilia (children) is ruining the chances of their recovery on time. “Substandard drugs facilitated by government into the markets are threatening a huge disaster for the patients,” the experts rued.
Speaking on the occasion, Vijay Kaul, Executive Director, Society for Haemophilia (SHC) , New Delhi stressed that drugs meant to cure Haemophilia (Anti-haemophilia factors) are first approved by the Food and Drug Administration (FDA, an agency of the United States Department of Health and Human Services) world over. “
But, J&K government has prioritized charlatans over professionals. By giving a slip to our specifications and recommendations, it has empowered charlatans to play with the lives of the patients. After following our recommendations for a certain period of time, government not only sidelined our views,” Kaul said. With an aim to safeguard the afflicted children’s lives, Kaul said, “I even filed a PIL in the J&K High Court to provide free and safe treatment to the patients. Subsequently, the court ordered the government in my favour and rupees two crores were provided for the same.”
Criticizing the hospital administration in J&K for failing to address the grievances of the haemphilia patients properly, Kaul accused, “The hospital administration has compromised on the lives of hundreds of children, besides the substandard drugs provided to them is taking a heavy toll on their lives.” Urging the state government to take the preventive measures forthwith, Kaul said, “We urge the J&K government to make available the safe and quality factors as per the specifications accepted by various hospitals in the country.”
Underscoring the need to create maximum awareness among the suffering children, Dr. Ruby Reshi, HOD, Dept of Blood Transfusion and Hematology, SMHS hospital, Srinagar underscored said, “The awareness levels on Hemophilia are remarkably low. We have to create more awareness to enable people to identify the symptoms and come forward for diagnosis. Also, it is very important to provide the existing list of patients in Jammu & Kashmir with highly purified factors so that the threat of blood borne disease like HIV & Hepatitis is eliminated completely.” “We have so far registered close to 138 patients. We know there are more that is why organizing this seminar is a step forward to create awareness about Hemophilia care through continuous supervision of all the medical and psychosocial aspects of bleeding disorders,” added Dr. Ruby, who was the chief guest on the occasion.
Talking to ‘Kashmir Images’ Syed Majid, a patient alleged the government of being insensitive to them.“We need FDA approved drugs to overcome the disease. Government’s support for some unscrupulous elements has thrived the trade of substandard drugs in the market. Besides, we demand that Haemophilia Society of Kashmir should be recongnized by Haemophilia Federation of India,” says Majid, who hails from Ganderbal.
Many pateints who highlighted their grievances accused that the Superintendent of one of the valleys leading hospital disgraces them with invectives. “Describing us lames will only worsen our condition. It is the people’s love which is of utmost importance for us. But, the treatment from top notch doctor only rubs salt to our wounds,” scores of patients complained on the occasion. “We also demand that all the patients suffering from the life-threatening disease should be immediately registered for treatment on time,” they added.
Notably, the event kicked off with discussions on hemophilia management followed by an interactive session with patients with hemophilia (PWH). On the same platform the scholarship program for Hemophilia patients called “I Believe I can fly” was also launched. The program will provide an education scholarship for three years for 20 students across India. This directly ties to this year’s theme for World Hemophilia Day, “Close the Gap,” which focuses on supporting positive change for people with hemophilia.
Hemophiliacs Living Under Persistent Threat
Sana Altaf (Kashmir Times)
Srinagar: The condition of 35 year old Firdous Ahmad, battling for life at SKIMS for the past one week, gives a clear picture of the health care facilities for Hemophilia patients in Kashmir. A week back, Firdous, resident of Hazratbal, underwent Hemphilia attack which resulted in severe headache. He consulted doctors at Srinagar’s leading hospital, who instead of giving him life saving Anti-Hemophilic Factor (AHF), referred him to SKIMS. “At SKIMS he was asked to do a CT scan first. For four days, he was under attack without AHF,” said Syed Majid, member of Hemophilia Society of Kashmir.
By the time the medical reports revealed hematoma in head, Firdous was partially under coma. “For Hemphilia patients AHF is a life savior. He should have been given AHF at first instance, whether he needed it at that time or not. AHF would not have caused any harm even if he was not under hematoma,” Majid, who pays regular visits to Firdous, says he has been put on ventilator. “He is in a very bad condition. Now the hospital authorities have ordered safe AHF for him but it is already late,” adds Majid.
While Firdous battles life, hundreds of other hemophiliacs live in constant fear of facing a fate like Firdous. In absence of required health care and medication, they live under persistent dread.
Manzoor Ahmad, father of 11 year old Hemophiliac, says the corruption in the health sector has adversely affected the health care.“The funds which are allocated for improving the healthcare, land into the pockets of corrupt officers. They are completely insensitive towards public health,” he said.
He criticized the non-availability of safe medication across the Valley. According to the Hemophiliacs, the AHF available here is unpurified and thus unsafe. Most patients are forced to use Fresh Frozen Plasma (FFP).
Syed Majid added that the establishment of a hemophilia care center is imperative from the proper treatment. Hemophilia patients demand reservation of seats at various education levels and employment.