BHUBANESWAR: Odisha government is set to frame a comprehensive policy for the prevention and management of rare diseases that will not only strengthen detection of the conditions in the population and provide proper health care to the suffering persons but also generate awareness among the people. The policy will be in line with the existing national policy on rare diseases.
A high-level technical committee headed by a Special Secretary of the Health and Family Welfare Department has been constituted to prepare the policy “which is the need of the hour as the cost of treatment of rare diseases is prohibitively expensive”, officials said.
The Central policy focuses on early screening and prevention through primary and secondary health care facilities and counselling for high-risk parents. Early diagnosis of such diseases is a major challenge owing to a variety of factors that include lack of awareness among primary care physicians, and lack of adequate screening and diagnostic facilities.
Rare diseases are also difficult to research as the patient pool is very small and often results in inadequate clinical experience. Availability and accessibility to medicines are also important to reduce morbidity and mortality associated with rare diseases.
The State policy will focus on the creation of a hospital-based registry of rare diseases so that adequate data is available for research and development related to rare diseases in the country. The Regional Medical Research Centre (RMRC) has a repository and the policy will support research on the diseases.
The nine-member technical committee comprises the Director of the Institute of Life Sciences (ILS), Director of RMRC, HoD of Paediatrics and Microbiology department of AIIMS-Bhubaneswar and SCB Medical College and Hospital, Superintendent of SVNIRTAR and Drugs Controller. The Director of Public Health (DPH) is the member convenor of the committee.
“The committee will look into the matter regarding the treatment of patients suffering from rare diseases like Duchenne Muscular Dystrophy (DMD) and frame a policy in line with the national policy,” DPH Dr Niranjan Mishra said.
The State is planning to have a crowd funding mechanism in which corporates and individuals will be encouraged to extend financial support. The policy will primarily focus on lowering the cost of treatment and promoting indigenous research. It will also strengthen tertiary health care facilities for prevention and treatment through centres of excellence, which will get financial support for upgradation of diagnostics facilities.
The Centre has made a provision for financial support up to Rs 20 lakh for the treatment of those rare diseases that require one-time treatment. Beneficiaries for such financial assistance would not be limited to BPL families.