Patients of Rare Diseases have Right to Get Free Treatments, However Costly

IMA Observes Rare Diseases Day (February 27) 

Patients of Rare Diseases have Right to    Get Free Treatments, However Costly

New Delhi, 27th February: Patients of rare diseases need not despair, thinking they are among a few star- crossed ones.  Courts are their custodians. Only that they are not aware of it. Courts have clearly held that however costly treatment of such diseases may be the state governments have to bear the full cost.

Treatment cost of some of about 600 such diseases may be up to the tune of one hundred thousand rupees per month. A disease having fewer than 100 patients per 100,000 populations is described as rare disease and fewer than 2 patients per 100,000 described as ultra rare disease. India is home to 72611605 such patients. Drugs, which are named orphan drugs, are very costly and have to be imported.

Indian Medical Association (IMA) observed rare diseases day on Feb 27, with a view to spreading this message far and wide, so that they can stake claims to their fundamental right for free treatment. Dr. K.K. Aggarwal, IMA Secretary General, in a press conference on Friday ( Feb27) called for special budget for such patients in the light of courts’ orders. He said awareness needs to be raised about such patients and their rights so that they have improved access to treatment.

Dr. Aggarwal produced copies of courts’ orders including that of apex court to underline that rare patients and their families cannot be left to fend for themselves. They have fundamental right to seek free treatment from the state governments. Governments cannot hide behind the argument that treatment is prohibitively costly.

One order reading as ‘just because someone is poor, the State cannot allow him to die. In fact, Government is bound to ensure that poor and vulnerable sections of society have access to treatment for rare and chronic diseases’- very clearly state the right.

A Supreme Court Judgment (appeal 2867 of 2012) quoted “Finally, we hope and believe that the institutions and individuals providing medical services to the public at large educate and update themselves about any new medical discipline and rare diseases so as to avoid tragedies such as the instant case where a valuable life could have been saved with a little more awareness and wisdom from the part of the doctors and the Hospital.’

IMA advised the medical students not to ignore reading about rare disease and the practicing doctors to update their knowledge about rare diseases.

IMA wants separate budget for the same. In two recent high court judgments, the court had said    “….on account of lack of Government planning, there is ‘pricing out’ of orphan drugs for rare and chronic diseases, like Gaucher. The enzyme replacement therapy is so expensive that there is a breach of constitutional obligation of the Government to provide medical aid on fair, reasonable, equitable and affordable basis. By their inaction, the Central and the State Governments have violated Articles 14 and 21 of the Constitution.

Dr. Aggarwal said the court also took serious note of the limited availability of affordable treatment for persons with neglected diseases like Haemophillia and ensured that the State Government provide treatment free of cost, as part of its obligation under Article 21 of the Constitution of India.

Some of the rare diseases: Amyotrophic Lateral Sclerosis; Cystic Fibrosis; Ebstein Anomaly; Factor XII Deficiency; Fanconi Anemia; Friedreich Ataxia; Gaucher Disease; Hirschsprung Disease; Huntington Disease; Multiple Endocrine Neoplasia Type 1; Tourette Syndrome; Wegener Granulomatosis; Weil Disease;  Zollinger-Ellison Syndrome; von Willebrand Diseases etc.

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