Seeking a comprehensive policy and plan of action for diagnosis, treatment of hemophiliacs
Vinay Vijay Nair & Ors. vs. Department of Health, Additional Secretary, State of Maharashtra & Ors. (PIL No. 58 of 2013) Synopsis: This Petition was filed on behalf of Hemophiliacs seeking a comprehensive policy and plan of action plan, particularly in the State of Maharashtra , towards the diagnosis and treatment of Hemophiliacs which has resulted in a large number of deaths of Hemophiliacs. Description: After several orders passed by the Bombay Hon’ble Court in the instant Petition, the State Government of Maharashtra started Hemophilia Care Centers at Civil Hospitals at Satara, Nashik, Amravati, Thane, Sassoon Hospital, Pune and KEM Hospital, Mumbai. The Anti-hemophilic medicines were made available at these centers from 2012. The rate contract for supply of Anti-hemophilic medicines ended in February 2015. As a result the Hemophilia Care Centers began to face a shortage in the month of April 2015. From May 2015 no stock was available at any of these centers. The Petitioners drew the attention of various authorities to the non-availability of these medicines. After the request of the Petitioners to Health Ministry officials, a tender was floated in 2nd week of June 2015. The said tender was to be opened on 26th June, 2015. However the opening of tender was postponed 3 times and extensions came to be granted from time to time further delaying the process of procuring the medicines. Finally it was opened only on 5th September, 2015. At the start of 2016 Anti-hemophilic medicines were supplied to the all the hemophilic care centres. However again from June 2016 onwards, AHF factor IX , FEIBA and NovoSeven have not been available at various centers. Although the State Government has taken several positive steps, the lack of availability of these medicines continues to be a major hurdle. Without adequate treatment the joints of such persons are damaged causing progressive disability and hindering their ability to live a life of dignity. Holdings:
- That even after getting supply of medicines from abroad, if there is no proper mechanism for distribution of the medicines, there is a possibility of those patients that require it suffering .
- Although the intention behind the policy is laudable. But the implementation must also be properly supervised and audited, otherwise the very object and purpose for which the policy is evolved, is defeated.
- In light of the aforementioned observations, the Respondent authorities were directed to place on record a proper mechanism to be evolved by the concerned Directorate of Health Services to deal with the issue of procurement and distribution of Anti-hemophilic factor (AHF)