-The Telegraph New Delhi: A patients' advocacy organisation today urged the Union health ministry to provide free prophylaxis transfusions to an estimated 12,000 to 13,000 children with Haemophilia across the country to reduce their long-term risk of developing joint inflammation and damage. The Haemophilia Federation of India, in a petition submitted to the ministry, said many international Haemophilia treatment guidelines recommend prophylaxis in affected children, which can help prevent crippling damage to...
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‘Policy on rare diseases will make treatment affordable, inclusive’ -Cinthya Anand
-The Hindu Patients face discrimination because public health systems and schools are not equipped to deal with the problem Bengaluru: “The cost of my daughter's treatment is around Rs. 1 crore per annum. If it were not for the aid of a United States-based foundation, I would not be able to help her,” said Prasanna B. Shirol, founder-director, Organisation for Rare Diseases India. His teenage daughter suffers from Pompe Disease, a rare...
More »As customs duty exemption goes, 76 life-saving drugs to get costlier -Vidya Krishnan
-The Hindu Haemophilia patients dependent on U.S. drug likely to be worst-hit. In a move that could inflate the cost of essential life-saving imported drugs, the Finance Ministry has withdrawn exemption of 76 medicines from customs duties. The list includes 10 HIV drugs and at least four cancer drugs, but Haemophilia patients are likely to be the most affected by the decision. Haemophilia is a genetic disorder in which the patient tends to...
More »Onus on the state-Sagnik Dutta
-Frontline A Delhi High Court verdict says the State government is bound to ensure that poor and vulnerable sections of society have access to treatment for rare and chronic diseases. SEVEN-YEAR-OLD Mohammed Ahmed Khan looked on helplessly as his father, Sirajuddin, narrated the sordid tale of the loss of four of his children to Gaucher's disease, a rare genetic disease that requires lifelong, exorbitantly expensive enzyme replacement therapy. Sirajuddin, a rickshaw...
More »Disability bill divides rights groups -Ananya Sengupta
-The Telegraph New Delhi: A disability rights bill the government tabled in the Rajya Sabha on Friday has not only angered activists by ignoring many of their recommendations but also split them. Javed Abidi is leading one side that is holding protests across Delhi demanding passage of the Rights of Persons with Disabilities Bill 2014, arguing that something is better than nothing. "If we oppose this bill, it will be delayed for two...
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