Hindustan Times (Lucknow)

HT remains undisputed leader in Delhi and NCR

- HT Correspond­ent letters@hindustant­imes.com ■

NEWDELHI: Hindustan Times continues to be the undisputed No. 1 English-language newspaper for the 18th time in a row in Delhi and the National Capital Region (NCR) with 1.7 million readers, the latest Indian Readership Survey shows, reaffirmin­g the formidable trust of readers in the brand.

Published by HT Media Ltd, HT has also retained its spot as the second most read English newspaper in the country, with 3.2 million readers. The closest competitor in Delhi-NCR is The Times of India, trailing at 1.4 million readers.

HT continues to strengthen its presence in Punjab and has emerged the No. 1 newspaper of the region again, with a readership of 352,000. In Mumbai, HT is a strong No. 2 with a readership of 859,000.

The numbers are from the Q3 edition of IRS 2019, and are based on the Average Issue Readership (AIR), a metric that represents the number of people who say they have read a publicatio­n within a time period equal to its periodicit­y (for newspapers, this is daily).

The survey findings bear testimony to the continued faith and trust in print journalism and all HT Media publicatio­ns — HT, Mint and Hindustan, which have done exceedingl­y well in all their key markets.

NEW DELHI: The 20-year-old daughter of Prasanna Shirol, founder of the Organizati­on for Rare Disease India (ORDI), has been in a coma for nearly twoand-a-half years, needing ₹1.2 crore annually to stay alive.

She is the first diagnosed case in India of Pompe disease- a rare inherited disorder caused by the buildup of a complex sugar called glycogen in the body’s cells that damages muscles and nerves and causes other complicati­ons.

“It took nearly seven years for doctors to diagnose my daughter as suffering from the rare Pompe disease,” said Shirol. Since cost of treatment for such patients can be exorbitant­ly high, these patients mostly rely on humanitari­an grants.

“My daughter’s medicine cost is borne by a pharmaceut­ical company on humanitari­an grounds. If I had to pay from my pocket, it would have been impossible. It’s not just the case with me, as the treatment cost for rare diseases is usually exorbitant­ly high and we look at the government to offer some relief,” he added. In order to provide relief to millions of patients that are estimated to be suffering from rare disorders in India, the health ministry has been working on a draft National Policy for Treatment of Rare Diseases that will soon be made public for feedback from stakeholde­rs such as state government­s, advocacy groups, patients etc. “Yes, the ministry is finalising the draft policy and it should soon be out for public consultati­on,” confirmed Preeti Sudan, secretary (health), government of India.

There is no universall­y accepted definition of rare disease; however, the World Health Organisati­on defines rare disease as an often debilitati­ng lifelong disease or disorder with a prevalence of 1 or less per 1,000 population.

Different countries have their own definition­s to suit their specific requiremen­ts, and according to the Indian Council of Medical Research (ICMR), it is one in 2,500 people or less.

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