As per a Down To Earth report, “More than 70 million people across India suffering from rare diseases, who do not have any government policy to fall back on—thanks to the abrupt withdrawal of the national policy for treatment of rare diseases (NPTRD) by the central government, which it announced in the Delhi high court on November 30.”

Rare diseases are complex in nature, often times life-threatening and can lead to disability. There are more than 7,000 documented rare conditions in the world. Lack of awareness about rare medical conditions and their risk factors is just the tip of the iceberg.

Bringing a change in society, Avantika Shrivastava is hosting India’s first podcast on rare diseases. Titled “1 in 20,000”, the podcast series will feature six episodes. Launched by Suno India, the podcast opens a constructive dialogue on what can be done to treat rare medical conditions.

Here are the excerpts:

How do rare diseases affect men and women differently? Is there a stigma around people having rare medical conditions?

Rare medical conditions are not gender specific but the difference in genetics can be a factor. They are genetic in nature. It contains medical, emotional, and genetic aspects etc. Rare medical conditions can occur to any person at any point of his life. Also, not all rare diseases are genetic. Sometimes women aren’t provided the same opportunities in comparison with a man or men are not really appreciated for what they are. There is not just physical pain but also emotional pain.

Stigma comes from intense notions about what is normal, what is not, what is beautiful or what ugliness is. Lack of understanding and willingness towards treating rare medical conditions can be observed in society. The society is not aware of the fact that to what extent rare medical conditions can impact a person’s life and how to handle it. That’s the prime point. It is true to some extent that people with disabilities are discriminated against in jobs, education systems. It is not a stigma but it is the way our society is structured.

What legal support is being provided to people with rare medical conditions? 

The understanding of the bureaucratic system about rare medical conditions is still limited. The engagement of policymakers and government with patients having rare medical conditions is required to a very large extent. Patients of rare medical conditions have the basic right to live with dignity but lack of support from society and policymakers is a problem. Although a change can be observed in comparison with previous policies, it isn’t enough.

The change can’t be done under one pact. To ensure effective implementation of legal rights, psychological and social aspects need to be covered. A restructuring of education, medical, and every other public system are required. The entire system is catered for able bodies. The basic requirement of ramps, escalators, and lifts for a disabled person is not getting fulfilled in public places. The mindset of all the leaders, policymakers needs to be changed. Collectively, it is a wakeup call for everybody to start working in the direction to help patients with rare medical conditions.

In February, the government released the Union Budget 2019. In the Health section, what are the aspects which are not covered?

The funds provided for rare medical conditions are quite low. The government has implemented National Health missions, National Rural Health Missions but the support is still minimal. An improvement in primary healthcare centers can be noticed but they are still understaffed and under-resourced.

Rare medical conditions require advanced treatment and care. Rare medical conditions are genetic in nature and they are chronic. While there is no known cure for some conditions, it can be controlled in two ways: diagnosis and prognosis. The cost of medications required to maintain the quality of life is exponentially high to bear.

Through your podcast, 1 in 20,000, what can be expected?

1 in 20,000 is a series and it’s going to feature six podcasts. The first podcast is already out. The next podcast will feature patients having rare medical conditions. It will feature medical aspects of what are they, how are they different, how its impact differs from person to person and some genetic aspects. The podcast will be talking about a few tools and technologies for the treatment of rare medical conditions. There will be a podcast on the legal rights of people with rare medical conditions and disabilities in general.

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