Rare Disease patients in Chennai anxiously await treatment support from the Government
Lysosomal Storage Disorders Support Society (LSDSS) along with Voluntary Health Services (VHS) Chennai raised awareness on the subject
6th March 2020, Chennai: LSDSS, along with VHS Chennai, organized the 11th Rare Disease Day in India. The event aimed at raising awareness about rare diseases, specifically Lysosomal Storage Disorders (LSDs) such as Gaucher, Fabry, MPS I etc. Eminent stakeholders including Cause Ambassador Actor Karthi Sivakumar; Hon’ble Chief Guest Mr. Thiru Johny Tom Varghese, I.A.S., Director for the Welfare of Differently Abled, Govt of Tamil Nadu; Dr. S. Suresh, Managing and Medical Director, Mediscan Chennai; Senior Advocate Ramesh. V, Madras High Court and Mr. M. Raja, State Coordinator, LSDSS spoke about the various aspects of LSDs, its impact on families, long-term management and the challenges.
Rare diseases are serious, chronic, debilitating and life-threatening, often requiring long-term, specialized treatments and management. Most of the rare diseases especially treatable LSDs are chronic in nature and require lifelong treatment having positive impact on patient lives. Many patients along with their families came together to observe and raise awareness on rare diseases and contributing to the society at large in which no one is left behind.
The event also highlighted the challenges faced by the families with LSDs and their fight to receive treatment support from the Government. In September 2017, Madras High Court ruled in the favor of rare disease patients and directed the State Government to initiate treatment on an immediate basis in Government hospitals and genetic centers. Article 21 of the Constitution of India guarantees the protection of life for every individual and Right to Health is an inalienable right. Despite the ruling which was issued two years ago, the State Government is yet to initiate the treatment support to the afflicted patients.
At a recent judicial proceeding on March 3rd, 2020 the Chief Justice of the Madras High Court firmly directed the State Government to provide treatment support to rare disease patients and allocate a definitive amount from the State Health budget and inform the Court in the March 11th, 2020 hearing about it’s progress.
There are about 27 rare disease patients in Tamil Nadu who have been identified and 4-5 of them have already died due to lack of timely treatment support from the State Government.
Recently, the Ministry of Health and Family Welfare (MoHFW) released the draft National Policy for Rare Disease 2020. The policy is far from reality and lacks genuine interest in providing the much-needed treatment to the “treatable” LSDs as listed in category III.
Mr. M Raja General Secretary, State Coordinator, LSDSS and father of a Gaucher disease patient said, “Health is a state subject and Tamil Nadu has always been a people-focused progressive, welfare state. Despite several judicial proceedings since 2017, not a single rare disease patient has been provided treatment. The Government of Karnataka has stepped up for rare disease patients and been providing them with treatment for over 3 years now. We urge the government of Tamil Nadu to act upon its responsibility towards addressing the dire needs of rare disease patients.”
Dr. S Suresh, Managing and Medical Director, Mediscan Chennai said, “Diagnosis of rare disorders is delayed due to lack of awareness and limitations in availability of diagnostic facilities. Early diagnosis is the key to proper care and treatment. The objective should be to identify the treatable disorders and manage them accordingly. Enzyme Replacement Therapy (ERT), the treatment available for treatable LSDs like Gaucher, Pompe, Fabry, MPS I etc., has proven to be effective and has had a positive impact on the lives of patients. It is important to ensure that patients receive treatment, so that they can lead a near-normal life.”
Dr. Sujatha Jagadeesh, HOD, Clinical Geneticist, Mediscan Chennai said, “VHS also has a Centre of Excellence (COE) for Rare Diseases to enable diagnosis as well as management of patients with rare diseases.”