One of the unfortunate realities of Indian society and governance institutions at large is the fact that there is not enough conversation on the lives of persons with rare disease. With discrimination rife in multiple different ways, people in India living with the rare disease live without support, understanding and worst of all accessible affordable medical care.
While there is no accepted definition internationally for what constitutes a “rare disease” and each country has its own definition, typically, the “Rare-ness” of a disease stems from the fact that the prevalence of this condition is low in comparison to other more common diseases. India, like many developing countries, currently has no standard definition.
Considering the large population of India, the ORDI has suggested a disease to be defined as rare if it affects 1 in 5,000 people or less. The National Policy for Treatment of Rare Diseases 2017, discusses rare diseases as a public health concern both in India and Globally because they challenge public health systems where diagnosis, treatment, therapies and medication are concerned. Currently, in India, about 450 rare diseases have been recorded.
People living with rare diseases are those who live with congenital defects and genetic conditions – in simple terms, they are born with it. They might not necessarily have inherited it directly from a parent and may be a result of a genetic mutation, but they certainly grapple with the calamitous effects every single day of their lives from infancy.
More often not, in addition to the social stigma, discrimination and their challenged existences, often the rare disease in question has no known cure. This means that persons living with the disease have to subsist on palliative treatments and managing treatments that are in reality, a Band-Aid at best.
Keeping aside the social indignities faced by these Rare Disease patients and their families, the difficulties they face to get that bare minimum medical care, or a diagnosis even, is astounding. The treatments that they do gain access to, by whatever miracle, are often expensive and the expense needs to be incurred repeatedly.
Expenses that no insurance company will reimburse. Up until a year or so ago, when the National Policy for Treatment of Rare Diseases was released by the Ministry of Health and Family Welfare, there seemed no hope in sight for Rare Disease patients and their families.
The High Courts of various states have been pitching in and releasing landmark judgments to help people with living rare diseases get the treatment they need.
However, it was not until recently that real hope was created. Based on a Delhi High Court decision from February 2018, the Insurance Regulatory and Development Authority of India (IRDA) released a circular dated March 19. 2018 that directed all insurance companies in India to cease from rejecting reimbursement claims from people with the rare disease and to ensure that their health insurance policies no longer excluded persons with “Genetic Disorders”. The IRDA Circular cites the portion of the Delhi High Court’s judgment that calls such an exclusion discriminatory and violative of Article 14 of the Constitution of India.
Given this change in the policy of the appropriate authorities, the backlash from insurance companies is a definite risk. As a result of this Circular, insurance companies may employ discriminatory pricing of their premium rates, for persons with the rare disease, depending on the severity of their rare disease and the frequency of their claims. This was the case in the United States, till the Affordable Care Act was passed by the Obama Administration in 2010.
Prior to this law, patients were often denied coverage, or where possible, were subjected to annual/lifetime benefit caps that would remove coverage upon the claimant reaching a particular cost ceiling. While it remains to be seen how insurance companies in India will react, it is not inconceivable to think that they may opt similar tactics to their American counterparts, thereby adhering to the letter of the Circular while going against the spirit of it. If India is to truly in letter and spirit protect the rights of rare disease patients, then this Circular is a good step that needs to be backed by laws that prevent any further arbitrariness resulting from its implementation.
The means of calculating medical costs, and the costs themselves need to be regulated appropriately; steps that were envisaged by the National Policy for Treatment of Rare Diseases.
As it stands today, the case before the Delhi High Court where the order directing the IRDA to look into the matter of discrimination against Rare Disease Patients, (United India Assurance Ltd v. Jay Prakash Tayal) has been challenged been challenged before the Supreme Court of India. Consequently, on August 27, 2018, the Supreme Court ordered a stay on the IRDA Circular and the whole matter is pending for decision.
Had this IRDA Circular not been challenged, Rare Disease patients in India, or “Rare Disease Warriors” as they are called internationally, would have won a very Rare Victory in every sense. This IRDA Circular represented a small victory in a life fraught with disappointments and hardships. It means one less thing to worry about and it means that Rare Disease patients and their families can focus on the most important thing – find ways to survive and then create their own “normal”, while living with their rare disease.
For the Organisation of Rare Diseases India, the IRDA Circular was a good first step toward making healthcare accessible for Rare Disease patients. It remains to be seen what the Supreme Court of India will do in this matter and whether or not they will rule in favour of rare disease patients. Whatever may happen, the ORDI is prepared to play its part in fighting for the basic rights of Rare Disease patients in India.
About the author:
Having grown up in India with Rare Disease known as “Alagille Syndrome”, Shambhavi’s commitment to fighting for the rights of persons living with rare diseases led her to study law. Shambhavi is a Felix Scholar and lawyer, qualified with a Masters in Human Rights Law from the University of Reading. She works in public policy research in the areas of human rights, health laws and environmental laws. In addition to her public policy work, She works parttime with the Organization for Rare Diseases India and also serves as Junior Director on the Board of the Alagille Syndrome Alliance, which is an International Not-for-Profit Organisation that is pushing for a cure for Alagille Syndrome while rendering patient support services.