04th March 2019, Delhi: In the backdrop of Rare Disease Day (28th February), Maulana Azad Medical College, Delhi with support from Lysosomal Storage Disorders Support Society (LSDSS) organized a rare disease awareness event in Delhi. The aim was to raise awareness about rare diseases, specifically LSDs, and its different aspects and to support the rare diseases community at large. Eminent stakeholders spoke about the various aspects of LSDs, their long-term management, the challenges, the central and state government programme. Patients suffering from LSDs were also present at the event.
The event highlighted the recent discussions at the central government level regarding the National policy for treatment of rare diseases which was finalized by the Ministry of Health & Family Welfare (MoH&FW) on 25th May 2017. The policy implemented in November 2017, had allocated Rs. 100 Crore corpus for treatment of rare disease. The fund allocation was made in the ratio of 60:40 between the central and state government. Besides these, so many other promises were made to make treatment available for patients. However, after 1 and a half year of policy formation, on 30th November 2018, the ministry took a U-turn from the earlier notification in the MoHFW website and said that the budget was never allocated, leaving patients in dismay. While the ministry in the last court hearing at Delhi High Court said that the policy was formed for the best interest of the patients but was decided hurriedly without consulting the states, in the bargain the patients bore the brunt.
Commenting on the necessity of providing treatment, Dr. Seema Kapoor, Professor, Dept of Paediatrics, Maulana Azad Medical College said, “Patients suffering from rare diseases, especially Lysosomal Storage Disorders (LSDs), often lead a very debilitating life. The condition is primarily caused due to dysfunctional enzymes. These disorders are often chronic and severely hamper the quality of life of a patient. Enzyme Replacement Therapy (ERTs) have proven to significantly improve the patients’ condition. Rare disease day is a great occasion to highlight the needs of the people affected with rare disease and also to showcase how treatment and prevention can have a positive impact on their life, especially in the case of LSDs”
“The Government has backtracked on Rare Disease Policy which is very unfortunate as we have already lost lives of more than 20 innocent children in last 24 months. The escape route of another nine months to reframe the policy by the government will increase the toll. Despite judicial intervention, Government is not coming forward to even initiate interim treatment process to handful of 198 patients who have submitted their applications through proper channel to the central technical committee at rare disease cell at ministry of health & family welfare since last 10 months. We request to the Government to reinstate the policy & seek opinions to amend it amenably & balance it. Along with reaffirms its commitment of Rs. 100 crore corpus fund to start the interim process of treating eligible patients as a pilot” LSDSS President Manjit Singh, urged
Throwing light on the recent legal proceedings, Advocate Ashok Aggarwal said, “Our justice system understands the urgency to provide treatment to rare disease patients. It is equally important for our govt too to believe that every life is important, and these patients need their support to survive. The court has asked the government to go through the global policies of leading nations and apply them in the Indian context. Meanwhile, we are hopeful to expect some positive news on the interim support for the patients”
The event was also a platform to bring patients and families together to raise their collective voice to seek hope for treatment from the central government.